barb's recovery

more about my knee

2012-02-07T06:48:00.000-08:00

Yesterday at the Y, which has a wall off mirrors in the gym, I saw that I was bending my knee and lifting it as I walked. Not like marching, of course, but on its way.Despite my adoration of my L300, the gait sensor in my shoe doesn't work,so the whole unit functions only intermittently. That means that I am waiting for a replacement sensor, wearing the unit in the hope that its intermittent-ness means that it can help periodically. Not yet today, though.

crocheting

2012-02-06T10:01:00.000-08:00

I certainly didn't "learn" to crochet yesterday, but I DID crochet. A neighbor who does a lot of textile art has an annual crocheting party on Super Bowl Sunday. It ends at 5 so that we can get home in time for kickoff. When I accepted her invitation this year, I mentioned that doing it one-handed would be a challenge, but I would try to figure it out when I was there. By the day of the gathering, though, she told me that she had devised a way that would perhaps work - it involved strong clamps and a plastic-covered board, which would have worked fine except that I kept taking it off to admire - or was it to understand? - my work. Instead I used my mouth and knees more than Nancy expected. Plus, I tended to push the loops over the end of the needle instead of using the hook to pull them through.I thought I was doing just fine, but every time I took it off the board to look, I lost the stitch off my hook and couldn't identify it to continue on. I would whine to Nancy or another friend sitting next to me, and they would look at my work, take a few stitches out and get me started again.We were crocheting roses, and mine was okay, but clearly the worst one made there. Maybe knitting is easier one-handed.But, to be honest, before I had the stroke, I had tried to learn to crochet twice and just could not do it then either. Before, it was a cognitive issue; this time it was more physical agility.

Serendipity

2012-02-03T08:05:00.000-08:00

My husband sees the timing of the stroke as being serendipitous for reasons different than mine: he looks at the fact that he just finished the renovation of our master bathroom with a walk-in - or nearly so (it has a 4-inch threshold) - shower, with an overhead - rainwater - and a handheld fixture. There was no built-in seat, but the stall was big enough to accommodate a handicap shower chair, but not so big that I had to take more than one step to get to the chair. I, on the other hand, was glad that the rowing season had just one week left, so I missed only two rows - one the day of the stroke and one the day after.I suppose Tom's view is the longer one. One neurologist told him that I would need to live on just the first floor and that would have been out of the question - there are two half-baths on the first floor, but no tub or shower and neither is big enough to add a shower. Renovating the laundry room into a bathroom was the best solution I could come up with. There is a breakfast room off the kitchen that could have served as my bedroom, but we've always imagined that as being incorporated into the kitchen when we get to that step in the renovation. (And, yes, our house is ridiculous in size, especially as it was originally a summer house. It always makes me wonder what the couple's off-season house was like.)And those priorities remain the same today - Tom is singlemindedly devoted to the house (and to me, but that makes it NOT singleminded, doesn't it?), while I am working to get back to rowing. Of course, I have always participated in the renovations - I used to be the designated sander and painter, along with being the gardener - except for anything involving a chainsaw. Someday I would like to help with all of that again. Perhaps I will be able physically to use a paint roller and climb a stepladder at the same time Tom finishes renovating the next room - kitchen, maybe? And perhaps my recovering the use of my hand and arm will coincide with the start of the rowing season - 2013, most likely.How's that for serendipity?

Interval rowing

2012-02-02T06:55:00.000-08:00

I tried intervals on my rowing machine this morning: two minutes moderate (28 strokes/minute, one minute fast (=>31 strokes/minute), repeat, for 1.5 miles. The difference in strokes/minute doesn't seem like much, but the former is a rate I can sustain - I've done it for an hour - while the latter is as hard as I can row. It took me 20 minutes.Seriously, the biggest challenge in the exercise was watching the clock and keeping track of which interval I was in. "Fast or slow starting at 17:00?" The rowing machine has a timer right on the same display as the rate, so I didn't have to look far and then lose track; losing track was all just within the space in my head. It all ended up being numbers, nothing significantly different from the next. I think I can compensate by making a table on my whiteboard that includes the time of the switches from one rate to another - no memory needed.I was pleased that I could do it without being exhausted at the end. BTW, pronating my arm is working much better the past couple of days. Sometimes I try just because I can; other times are so that I can check my watch - it has a stretchy strap that fits over my scrunched hand.

foot/knee control on the bike

2012-02-01T12:50:00.000-08:00

Patricia and I just got home after a workout at the Y. It was the first time that, riding a stationary bike, I've kept my foot on the pedal without strapping it on - I didn't strap it on because I couldn't find the strap that's usually there; Patricia got a rope from the stretching room, but I was already on and pedaling when she got back to the bike. I kept my foot on and my knee out - not flopping toward my right side, as it insisted on doing. It was only three-quarters of a mile before my foot slid off, but I kept it on for that entire distance.

It happened again!

2012-02-01T08:51:00.000-08:00

Today was my first solo trip to the grocery store. We didn't need much, but Millie wanted something for lunches and snacks at work so that she doesn't have to spend money on food every day.Although I have pushed around a shopping cart around the store, I have not ever pushed it in the parking lot. That turned out to be the hardest part, and the highlight of my trip, too. As I was wrestling the cart along to keep it away from parked cars, a stranger coming out of the store approached and asked if I needed help; after I said yes, he rolled it into the store, then returned to tell me where he had left it. Obviously, I thanked him over and over. His response was,"It's nothing. Have a good day." Once again, a stranger was kinder than some acquaintances.While shopping, I found that walking along beside the cart gave me more control over it and gave me more stability than pushing it from behind.On the way out, after filling 4 reusable bags, the struggle started again. The problem was that the parking lot had cracks and patches and strewn gravel, unlike the linoleum floor inside. Plus the wind, which blew against the bags and my coat, gave me yet another thing to fight against - as though I didn't have enough already.Back at the car, I loaded the bags into the trunk and then returned the shopping cart to the cart stand, despite the struggle. I felt pleased with myself for putting it where it should go rather than abandoning it in the parking lot.

mementos and memory

2012-01-24T10:15:00.000-08:00

I know I've blogged before about how the experience of my memories has changed since the stroke: Instead of watching analytically from a distance, I am back in the situation - up close and feeling everything as a blast from the past rising like water around me. The result is that I try not to think back about several batches of experiences - those I associate with bad memories.Some I can't avoid, though: whenever I walk into the gray marble bathroom next to the kitchen, I flash back to the morning I had the stroke. There I am, confused about why my ankle kept giving out, why Tom was acting so concerned - and then there's the damn toilet paper roll empty on its holder. Confusion, denial and a rising anger - I feel it all - instead of just an urgency to pee, which is why I just ventured into the bathroom in the first place. You ask why I don't just use the other first-floor bathroom. Answer: well, it's on the other side of the house, down 4 steps and just is nowhere near as pretty as the "Ansel Adams" bathroom.The memory dunking happened again this morning as I was sitting in bed drinking coffee. Hanging from a window latch on the bay window with window seat is a thole pin from a gig boat (correction: a thole pin for a gig boat - it has never been used in a gig boat). It hangs on a long black cord with a small card attached.This morning, the sight of it took me back to my bed in Spaulding one afternoon when a group - about 4 or 5 - of rowers visited me. I was pleased to see them, as I was to see every visitor. That day, though, one of the rowers - with white hair and chocolate-colored eyes - stood awkwardly (which I thought was odd and troubled me) between me and my window. He held a crimson gift bag. As I remember it this morning, I again see his awkwardness and feel my own discomfort about it.)To elicit a smile, I joked,"I hope that's a beer, Chip."He shook his head and held it out. "No beer. This is from the rowers."In the bag was the thole pin that now hangs in my window - sanded and stained, with a small red card attached, a card that has faded to white in its south-facing home.It read: "This is a magic thole pin. If you are ever feeling down, you tap it three times and you will envision your rowing mates cheering you on toward the shore. We are all on board with you and your family. We love you, Gloucester Gig Rowers."It made me tear up then and now.Anyone wonder why I'm so focused on rowing again?

"my sense of security"

2012-01-16T13:02:00.000-08:00

I enjoy discovering new stroke survivor blogs ... In some cases I encounter someone in far better shape than I'm in recovery-wise, but sometimes worse. Both situations enlighten me: the ones who are bad-off, but have a sunny perspective and the ones who are thrilled about taking small steps to get back to their lives and act as encouragers to the rest of us - both enrich my life.Today, I found one written by "Andrea." In it, she said something that was just for me:"I know the stroke played havoc with my sense of security."Bingo! Pre-stroke, I was confident, and I trusted my body and mind completely. Once my body and brain failed me, I lost that confidence and now live my life timidly, not boldly. I work hard, and I try my best to do my best, but sometimes I'm horrified by how short I fall.If my body and brain could do this to me, how can I trust them to get me through anything challenging in the future? And yet, here I am, depending on them to recover enough that my future will be better than today. Not that today is terrible, just uncertain. I drove my son to the train station without incident this morning, and was surprisingly relieved to make it home safe and sound.I have never been much of a risk-taker. Before the stroke, my husband used to tease me about how I should have worked in the insurance industry because I can - and will - imagine everything possible going wrong and work to make the best of it - BEFORE IT EVER HAPPENS.Now, I try to wing it and hope for the best, something foreign to me - the "winging it," I mean. Taking the train to Boston, I am usually nervous about having the right bills for my cab rides, etc. Tom always gets exasperated and tells me I can use a credit card for everything/anything I want. But the thought of using it in a cab worried me; so, one day when I had the correct bills for the cab, I paid with my credit card - as practice. In fact, I bought my train ticket home that way too. I needed two bucks, though, to buy the bottle of water I always get in North Station.Of course, the credit card machine in the cab didn't work right - or I'll bet I didn't use it correctly, which is more likely. Before I tried to use it, I told the driver I had never used one before and asked him to be patient. When I had trouble, he climbed into the back seat with me and tapped the buttons for me.Is it just me or does everyone tip a lot more when having the service worker enter the tip amount?

hamstrung

2012-01-12T09:13:00.000-08:00

My PT is known for being tough and demanding. She's very good at what she does with me, but is the kind who cajoles you into doing "just 10 more," and when you finish, she tells you to do 10 more. TWICE.She loves what my L300 is doing for me. She asked me last week to bring my EMPI eStim unit with me this week, and this morning,I remembered, which made her happy - and that's not easy. She attached the eStim to my hamstring and cranked the power way up; she uses the technique of turning it up way past, "I feel it," to "OUCH," then a louder "What's wrong with you?" That also made her happy. She had me sit on the edge of the matt table and, when the buzz (physical, not audio) was on, extend my leg in front of me, then pull it back and under the table as far as I could. Repeat 10 times, rest, 10 times, rest. Then eStim off and L300 on, and I walked the tape line on the floor. Even I could tell how much better I could control my knee, even lifting it in front of me almost the way my right leg works. It felt easy and peculiar together. The carryover effect lasted while I walked about 30 feet back to the table, another 30 to get my coat, and I think even out to the parking lot. She had told me that as I used it,the carry-over effect would last longer and longer until I eventually can do it all myself.And THAT makes ME happy.

attachments

2012-01-11T14:19:00.000-08:00

My L300 has a little blinking and beeping controller with a short strap, long enough to slip around a wrist; the controller must remain near the gizmo lashed below my knee or its beeping intensifies to the point of panic and the strap beneath my knee shuts off. I tend to wear pants and sweaters with pockets, so I slide the controller in one of those.The L300 also came with a small holster to attach the controller to my belt (but I don't ever wear one) or the waistband of my pants. While the whole L300 gadget can be donned one-handed, the holster was a mistake because the clip that the fabric slides into is far too tight to attach it one-handed. When I don't have a pocket, carrying the controller becomes a little more creative - the training rep from Bioness suggested carrying it in my purse.Well, guess what? I have not been able to carry a purse: my left shoulder slumps too much to keep the strap over my shoulder; my right shoulder can handle it, but the purse gets in the way of my cane; shoulder straps that go over my left shoulder, then diagonally across my chest so that the purse rests on my right hip are problematic when they decide to slip down the length of my body and lasso my feet. It happened once in a grocery store and once at the top of a flight of stairs. Messenger bags are much better because they stay around behind or can be cradled in front. Getting money or a credit card out of them is challenging, though, so I've opted for a fanny pack, which looks ridiculous, but lets me keep my wallet upright inside while I unzip it to retrieve money. I rarely wear my fanny pack - for reasons of ridiculousness - so it is not a reliable option for carrying my controller.Instead, I tend to slip the wrist strap through a belt loop on my jeans and pull the controller through the looped strap so that the controller dangles; I was very pleased when I discovered I could do that one-handed. Today, though, I was going to the gym and had no pockets and no belt loops. What I had was a cord hanging from the waistband of my sweatpants. I don't know how I did it - or even if it's a real knot - but I managed to tie the cord to the strap well enough that it has held on all day. Maybe my next accomplishment will be tying shoelaces! I don't mind elastic coily shoelaces, though, because I've always tended to slip shoes on and off without untying them, so they just make that easier.I'll bet the title of this entry made you think it would be about some other kind of attachment, right? Something more bittersweet and emotional - am I right?

by the book

2012-01-04T06:37:00.000-08:00

Like many bloggers, I am a writer, and writing blog entries is the best way for me to respond to what has happened to me. If I were an artist, my coping would probably involve creating artwork; a football player, I'd be bulking back up; if a bus driver, getting my license back.

In my 30 years as a writer - both studying and practicing - I have written 4 novels that were never published. Part of that is because they suck. I gave up fiction-writing when I realized I was getting to the point of being pathetic. Giving up is not one of my deep-inside characteristics; in fact, I am the opposite - I tend to stay the course through every storm, promising myself that I will hold out through whatever the trouble is. I compromised, though, by considering John Updike's point of view. As both a writer and an editor, Updike saw writing as sailing on the open ocean, while editing is "hugging the shore." So, I became an editor. It wasn't that clear-cut at the time: the newspaper that employed me as a reporter needed an editor and selected me: I was reliable, a solid writer, met every deadline, and, after a bit of feedback, could successfully edit my own articles, which I have found to be the most challenging editing task because I am attached to each phrase I write and I know exactly what I mean by it.

"Giving up" was something everyone advised me to not do. Friends and family members encouraged me to be persistent and not give up writing fiction; they told me the story of Theodor Seuss Geisel having a book rejected hundreds of times - as the legend goes, while Wikipedia claims it to have been 27 times - before one publisher took a chance and published "To Think I saw it on Mulberry Street," one of the Seuss books I did not memorize as a child. I memorized others to prove that I could read, on which there was pressure to do early in our family. As proof, I would sit on the floor of the bedroom I shared with my sister with a book in my lap and recite the story, keeping my eyes focussed on each page. And I thought it was even more convincing to turn the page at the correct spot in the text, so I figured that out too. Agreed, I was a self-confident show-off at a young age.

Back to giving up my fiction-writing career. If it wasn't pathetic to have 4 rejected books, how many would I have to write to hit "pathetic?" 10? 27? 100? The thought of going through rejection letters for 100 books was unbearable. As it was, my agent stopped sending me rejection letters that contained no constructive criticism because all I ever wanted to know was "Why?" She couldn't answer herself - she had told me that she could sell the 2 mysteries.

How does this relate to my recovery?

I am currently writing a book about my recovery; it will comprise many of my blog entries. (Yes, that is the correct use of "comprise;" it means "include," and should not be used as "something is comprised of." Look it up.) Its title is "Stroke After Stroke." It begins the day the stroke occurred and will end with the first day I row - for real, not with help -again. And I WILL finish it; this time I will not give up. Forget about convincing someone else to publish it; I will publish it myself - digitally and in soft-cover. It's something my dear son, Brian, knows how to do. For Christmas, he gave me a hard-cover volume containing the first mystery novel I wrote. Of course, the gesture made me cry, but the author blurb he wrote for the inside of the jacket was even more touching.

Rebirth?

2012-01-03T12:17:00.000-08:00

I know that some survivors consider the day of having a stroke as a "rebirth" into the world - becoming a new person infused with gratitude for a second chance, having a fresh way of looking at everything previously taken for granted. They celebrate "rebirthdays." I, for one, do not look that way at having had a stroke. To me, having had a stroke meant the death of my old life, not the birth of a new one. Sure, there are things that are better now: my focus professionally now is on being a writer, not being an editor because I couldn't sell enough of my writing; I have concrete proof that I am well-loved by my family and friends; I know that the hard work, determination and strength of character that my recovery has required can all be diverted to some other worthy task once my rehab is complete; I can accept that "what happened is what happened and [for me anyway] is not likely to happen again," to paraphrase Bartholomew Cubbins, of "500 hats" fame. That does make the stroke I had the beginning of a new phase of my life? Does that mean I was "reborn" after all?

Often, when I wander through semantics and my personal experiences like this, I end up with many questions and few answers - just like being in adolescence over again. And learning to walk makes me 1 again, while redeveloping my reasoning skills puts me at 7 or 8. And, because of the spasticity in my hand, I still can't crawl; although I can get on my hands and knees, keeping my fingers curled. Not being able to tie my shoes, use a knife to cut my food, or zip my coat puts me pre-kindergarten, right?

And yet, I am still the same person inside as I as before the stroke - I'm just missing some handy skills I used to have. One day, perhaps 6 months after the stroke, my younger brother was visiting; I was in the dining room on the phone with my boss, using speakerphone - giving my boss shit about something or other; we were tossing smart-aleck phrases back and forth, always laughing. As soon as we hung up, my brother said," Now THAT's the Barb I know." or "Barb's back," or some equivalent. That epiphany happened with several people - friends and family who would turn their heads to look at me with a bit of relief as they register, "I remember HER."

Just as I was not perfect before the stroke, I am not perfect now. Like everyone else, I have a long list of attributes and another of flaws. Let's not get into details. As much as I don't want/like to blame the stroke when something goes wrong - communication, calculations ( I tend to way overtip now - is that because I figure it out wrong or because Millie's been a waitress so long? If I figure it out wrong, it should sometimes be over- and sometimes under-tipping, right? There's that 8-year-old again), I do like Dean Reinke's phrase "stroke-addled" to cover for a mistake. Sometimes perfect words or phrases already exist and we neglect to apply words in a fresh way, falling back on the trite instead. There it is: those damn semantics calling my name again.

Where does that leave me? Reborn into a more grateful version of my former self? Or my former self interrupted by a nightmare? I have a hard time getting a handle on this. Part of it, I think, has to do with the fact that throughout the stroke, I never lost consciousness - I stayed awake throughout the CAT scans, MRIs, repetitive questioning about the date, the president's name, where I was and whether I could squeeze this or that doctor's fingers. There was never a point at which I woke up and had to be told what had happened; I experienced it all in real time. Wouldn't a rebirth start with an awakening, the dawning of knowledge about my injury? Am I trying to make this experience too formulaic, when really, "every patient is different, every stroke different, every recovery different"? Yes, that's ironic.

I'm not saying that those who consider the date of their strokes as a rebirth are wrong; they are perfectly right about themselves. It just does not fit ("ring true for" would have been the perfect trite phrase for here) me - either one of me: pre- or post-stroke Barb.

Size matters ...

2011-12-27T13:38:00.000-08:00

When I was in Spaulding Rehab, it made me envious that other stroke survivors could do more than I could: my roommate could use a walker with wheels, holding on with both hands, PLUS she got to get out of bed and go into the bathroom by herself; the 22-year-old across the hall had an "I" written on her whiteboard, indicating that she was independent, while my whiteboard was filled with a list of everything I needed help with - exactly everything, except eating, which I have always been exceptional at; I played a game with a woman who had a stroke the week after I did - I could bat the ballon toward her using just my right hand, while she could use either, depending on where the balloon was. My solution was to whack the balloon at her just as hard as I could. Not a very good sport, was I?

I kept asking my physiatrist why my deficits were so much worse than others' and I repeatedly got the infuriating answer, "Every patient is different; every stroke is different; every recovery is different." Finally one day, his answer changed and he beckoned my husband and me to follow him. He took us to a computer at a nurses' station and called up my MRI. According to him, the white areas showed damage - my entire right hemisphere was shaded white, with scattered regions that were intensely white; the penumbra (the slightly whacked area) was the lighter and the dead areas were white-white. None of it looked like my left hemisphere, which was also displayed in the MRI. Later, the doctor told me that that my encounter with the MRI was the only time he ever saw me cry while I was at Spaulding. He was right that the visual impact hit me hard, but I know I cried other times because I had the same red-rimmed shell-shocked eyes that every other stroke survivor there had. We all wondered how we got singled out for this particular nightmare.

Whenever I let the slow speed of my recovery - and it's ironic that "speed" and "my recovery" are ever in the same sentence - get me down, my husband reminds me of the severity of the stroke I had.

progress today

2011-12-15T11:57:00.000-08:00

After a very crappy, "this is too hard for me" day yesterday, the Universe made up for it today when I passed the driving competency test and came home with a driver's license!! I surrendered my license in April 2010 after the RMV issued me a handicap plackard and then kept telling me I had to take a competency test to retain my license. It took another 6 months before I felt capable of driving, even using a permit, then almost a year before I was brave enough to take the test. I failed the first time - last June - because I did not have adaptive equipment installed in my car.

Once the equipment was in place, I practiced everything I needed to do correctly, signed up for another test and then waited 2 months to take it. The test schedule this time of year is packed because everyone is trying t take it before the bad weather starts. So, December 15 has been looming for a while. It really was a high-stakes test because failure meant prolonging my dependence and reinforcing my what-is-called "learned helplessness," which develops when someone doesn't do tasks for so long that the ability goes away or never develops. For example, if someone else had been dressing me for the past 2 years, I would not know how to dress myself. Ditto for walking, showering, etc.

I am feeling now the same - or similar - sense of freedom and possibility I felt when I first got my license at 17!

my hand as a tool

2011-12-10T11:14:00.000-08:00

Since I had the stroke, I - along with many others, including the OTs who have helped me - have bought into the concept that a hand is a tool and the arm is just a "delivery system" for the hand - putting the hand where it needs to be to work as desired.

Yesterday, though, I read the book " My Last Degree: A Therapist Goes Home After A Stroke," by Rebecca Dutton, an occupational therapist who had two strokes, wrote a book and has become an active, contributing member of the online stroke survivor community. (Rebecca: I hope you don't mind these and the following references to you and your work ).

Rebecca's book changed my view - and my opinion - of my arm:

Since the stroke, I have single-mindedly - along with single-handedly - pursued the awakening of my hand, seeing it as potentially far more functional than my arm. Rebecca's attitude is more along the lines of seeing the functionality of an arm - even a severely limited one.

Her book suggests tasks that an impaired, but somewhat controllable, arm can do. Since reading it, I have carried the following: a pair of flannel pajama pants, my wallet (cloth, so it has some friction), my cane (it has a rubber cushion that gives it LOTS of friction) and a book (Rebecca's) IN MY ARMPIT. It was only the book that caused me trouble; the cover is so slick that it slid out within seconds. Instead of retrying and having the same thing happen (yes, I can be taught, even now), I used my tried-and-true method: holding the book and my cane in the same hand, the book squashed against the cane handle. I save the in-the-shoulder-bag/messenger bag technique only for more fragile items (e.g., my iPad, coffee mugs, lunch dishes, wine glasses, etc.) and the toss-and-retrieve method only for really sturdy items (small garden implements, etc.) To try her approach for the book again, I would put it in something with friction on the outside (maybe a cloth or paper sack - or maybe I'd wrap it in my flannel pajama pants) and tuck it in my armpit again. Obviously, the carrying technique requires the ability to pull my upper arm in against my side, but, despite all that my arm cannot do, it can do that!

Many thanks to Rebecca.

2-pound weights

2011-12-09T05:29:00.000-08:00

In PT sessions, my PT concentrates on me strengthening my hamstring and glutes to improve my walking. Yesterday, I was sitting on the edge of the table mat doing exercises that involved me lifting my lower leg. I could do them well enough that my PT got a weight from the collection and wrapped it around my ankle. I repeated the exercises and they were NOT impossible! After I finished, I asked her their weight.

"Nothing - these are lightweights - maybe a pound or a pound and a half."

Then she read the tag and said," I'm wrong. They are two pounds," and she sounded impressed.

So I guess I'm impressed. I'll try to repeat the exercises today with my 5-pounders.

winter gardening

2011-12-03T04:32:00.000-08:00

Yesterday I successfully went on a two-mile hike. It took me three hours to complete - but I'm even impressed that I could walk my fastest for three whole hours; that's as much of a feat as the distance itself, I think. It is the longest I've walked since starting to use the L300 a month or so ago.

I'm resting today.

Along the walk, I got to observe my neighbors' garden and how they've grown since I last walked the Eastern Point loop. One had black-eyed Susans still in bloom - I'll definitely plant them in the spring. Another had bright yellow-green golden cypress - also impressive on Dec. 2; their color was there all year, yet they are overpowered in spring and summer by all the other lovelies in bloom. Now, though, they are striking. Another nice addition for my garden.

One of the positive things about winter - in contrast to slippery ice, snow and not being able to shovel or make snow sculptures yet - is that I get to plot next year's garden. I'm a planner, living lots of time in the future and struggling to enjoy the present. Since the stroke, that part of me has been like beating my head against a granite wall. At least in my garden, I can be successful and enjoy the product - that's the equivalent of walking two miles yesterday, although of course, I'm already planning to walk it in less than 3 hours. So much for reveling in my success!

Proposal for female stroke survivors ... please comment

2011-11-30T07:00:00.000-08:00

I have spent the past two years trying to accept that I am not and may never again be fashionable or eye-catching in an attractive way. It all started when my husband went online just after the stroke to try to find clothing specifically for brain-injured women - man, they were God-awful - baggy and drab colors! Since then, I have perused my favorite pre-stroke online vendors: J. Jill, Coldwater Creek, Nordstrom, and Victoria's Secret. Obviously, not all of those sell stylish clothing, although a couple do.

Plus there used to be a women's clothing shop on Main Street in GLO, where I bought most of my clothing (I sometimes think she went out of business after I had the stroke BECAUSE I had the stroke and no longer went to her shop once a week to see what was new.)

Of course, there are sweats and sweatshirts, but that just won't do for me except in the gym and at therapy.

As someone who enjoys new clothes and looking good and has a rule that she will NEVER buy something unless it looks great on her, I have had little success finding clothes that work for me post-stroke. And not many of my pre-stroke clothes look great on me AND are easy enough to put on myself: too many skirts, zippers and tiny buttons. Jeans are okay EXCEPT for my Levi 501s, with a button fly. Short zippers on pants and fleece tops are okay, but pull-ons are much easier. It's hard to look dressy, though.

And bras! Despite advice, the only way I can handle a hook closure is to fasten it and then step in, pulling it up over my hips, which inevitably stretches it enough to render it useless as support and it becomes a wrecked $35 object. Most compressing sports bras are just too small around to even make it over my hips. I have found some great pieces of clothing here and there online.

And this is my idea: how about I start a blog about specific clothing I've found that might be acceptable to other stroke survivors? I can include a link for each item I've found helpful in different categories, with descriptions of pluses and minuses.

For example, I found a cape that I fell in love with at Coldwater Creek, with big buttons and arm holes. Unfortunately, when it showed up, the buttons were decorative and covered huge snaps, which I could snap only when the cape was off of me, but then popped open as it went over my head and put my arms through. That taught me to read descriptions more carefully BEFORE purchasing. Eventually I found a great cape at Nordstrom - Calvin Klein and available in navy only, so I look like a nurse from my mother's era. But it took a lot of time cape-searching; I wanted a cape because winter coats are difficult for me to put on - both the sleeves and the zippers, although many have snaps. I do have a long wool one from L.L. Bean that is easy, but not something I would throw on to go get the mail.

I also purchased hobo gloves, which I thought was a stroke of genius, but still have not been able to stuff my fingers through the finger holes by myself. Mittens are definitely the way to go, even though my hand is balled and useless - which is how it is anyway.

Plus, having the Bioness means I need a pocket for the controller - another complication in requirements.

Please let me know if you think it would be a helpful resource for other new stroke survivors. Thanks for any/all comments. And input, if you have solved some of these problems yourself.

And if male survivors have advice, maybe I can add that information, too.

Idealizing the past

2011-11-29T09:55:00.000-08:00

I ran into this by MK Miller on Facebook:

If you’re also starting over, remember: 1. RESIST THE URGE TO IDEALIZE WHERE YOU WERE.

She is not talking about idealizing a pre-stroke life, but I would like to ...

I have the tendency to relive the wonderful parts of my pre-stroke life - the productive workdays, laughing, my boss at his best, driving my Jetta on a beautiful day, coming in third in the Northeast Rowing Championship, running three miles to Good Harbor Beach, walking into the frigid water and then returning home to soak in our hot tub, moving things (dirt, mulch, water, plants, rocks and gravel) around in our gardens - without pasting in the negative parts. It's definitely an edited reality, revisionist history at its worst - because I truly believe THAT was my former life and the pain of losing it is searing.

Having an airbrushed memory of the past prompts the unsolicited advice from others to not live in the past or in the future, but to focus on now - which I really don't want to hear because I am still very attached to the life I lost, working very hard now to return to it and having little clue what the future will deliver. To me, ignoring the past and the future to live "in the present moment" is a mistake: we learn from the past and plan for the future so that we are prepared for today's curve balls. I don't mean it's good to obsess about the past, worry about the future or waste the present. I would rather appreciate small pieces of the past and present and follow their trajectory into the future for me; that is the basis of hope.

a relaxed hand

2011-11-28T14:43:00.000-08:00

I have a magical sister-in-law Sylvia who massaged my hand on Thanksgiving and it's still relaxed today. Last night while in bed, I kept putting my palms together and entwining my fingers - something I have not been able to do since my hand was flaccid way back at the beginning. I still don't understand how she did it, even though she explained everything to me as she kneaded my hand and arm and feathered her fingers across the back of my fingers. I wish I had asked her how I could do it myself.

long sleeves

2011-11-22T10:10:00.000-08:00

Now that winter is nearly upon us, I have started wearing more long-sleeved shirts and bundling into sweaters to compensate for my very cold house. Until recently, I've gotten away with T-shirts, handy because of using my Saebo, with a sweater or sweatshirt over. It helps that doing the Saebo exercises warms me up significantly - I think it's the standing for an hour, which is tiring.

As a general rule, I have not put a long-sleeved sweater over a long-sleeved shirt unless someone else is around to help me fish the left shirt sleeve out from under the sweater sleeve; having the sleeve bunched around my elbow is crazy-making for me, so leaving it as-is is just not possible for me.

Yesterday, though, I used my right hand to help my left hand grasp the end of my shirt sleeve before pulling on a sweater and it WORKED. My left sleeve stayed flat under the sweater, just as my right sleeve always does.

It should work, too, with sweater sleeves under coats. Bring on winter!

to the yellow spring!

2011-11-18T11:50:00.000-08:00

I was delighted at my OT session yesterday ... For a couple of weeks, I had been having a problem letting go of the balls when doing my Saebo exercises. Hand-in-hand, so to speak, was a problem opening my fingers straight enough to pick up the following ball. Because I couldn't pick up the next ball, I let my hand relax and open for longer than in the past in order to fit the ball into my open hand. Corresponding to that, it took me far longer to pick up each ball and my "total balls moved" in each 45-minute session dropped drastically. At my OT session, my OT moved me up to the next tighter spring - which in theory makes it harder to grasp, but easier to straighten. She tested me using the new spring (yellow) and it worked fine for 2 or 3 balls. Then it was time to leave. At home this morning, I tried a session but I was not strong enough to grasp the first 5 balls - straightening worked great, though. I went back to the weaker spring and my former problem returned, but was not as bad. I WILL work hard, though, and get to that yellow spring sometime soon.

Defined by stroke?

2011-11-15T05:03:00.000-08:00

My daughter, Millie, developed type 1 diabetes when she was 10 years old, and was diagnosed in June just after fourth grade ended.

The following school year, she was assigned a new – both to the school and to the profession – fifth-grade teacher. In an attempt to get to know her students and for the students to get to know each other better, she gave them homework the first day: to make a poster about themselves that listed three of the most important things about themselves.

Millie, being Millie and loving art projects, went overboard on the poster. It was gorgeous, with horses everywhere. Her three important things about herself were: I love music, I have diabetes and I go horseback riding every week. In that order. When I talked to her about her selections, she was very clear about why she chose them and where she placed them … certainly her classmates knew the first – she had, after all, gotten the coveted lead role in the fourth-grade musical – but the teacher didn’t know that. She said she had to include the second because very few classmates knew and the teacher did not know, and it was important for them to know, in case she ever needed their help. And horses were another passion she just couldn’t leave out, especially with them all over the poster. And she said that she put them in that order because, although having diabetes was important in her life, she didn’t want it to be the first impression everyone got. Sandwiching it, she thought, reduced the emphasis. In effect, she did not want to let diabetes define her. Since her diagnosis, medical personnel had emphasized that she should not let herself be labeled, or label herself, a “diabetic.” She was to say that she HAS diabetes, not that she IS diabetic. At 23, she still does that now. In fact, she got a tattoo (her third) to replace a Medic-Alert bracelet and had “diabetes” tattooed on the inside of her left wrist.

In the same way, although the stroke I had will always be evident in my life, I think, I do not believe it defines me. Yes, for the past two years, I have been consumed by rehab and have spent most of my time either exercising, thinking or learning about stroke. The three most important things about me, though, are: (1) I am a writer, (2) I had a stroke and (3) I have the two best children – albeit grown up – in the world. As for the order, perhaps (1) and (3) should be swapped, but calling myself a writer resonates better in my soul than identifying myself as a mother – perhaps because my kids are 23 and 27, which means much of my most intense mothering was done a long time ago - and there has been a brain injury since then.

Yesterday was my two-year anniversary

2011-11-13T07:03:00.000-08:00

The sand at Crane Beach is far finer than that at the beaches near our house. That meant that walking on it, even with my Bioness L300, more of a challenge – my left food sank into the sand, so I was pulling it out every step and shaking off the sand, which I would not be able to sustain that all the way across the boardwalk, which was covered with surprisingly deep sand. Plus the hard wind drove sand into my eyes, depending on the direction we were walking. After one aborted attempt across a likely-looking boardwalk path over the most inland dunes, we tried the next one south. It had many more stairs up, which I had been trying to avoid in an attempt to prevent my unaffected leg from fatiguing too soon. A beach worker drove a pickup truck by us on the flatter boardwalk and offered us a ride out to the firmer sand. I, of course, said, “No, thanks,” because, after all, wasn’t walking out there one of the points of setting a walk on Crane Beach as my goal?

The boardwalk we chose second ended before the soft deep sand did, so I had 30 yards of sinking into it to get to the wetter, firmer area. Whining much of the time, I made it out there and reveled in the length of the beach and the magnitude of the sky and view. The sun had called two dozens walkers there. We headed south until I was tired enough to deem it wise to head back. Halfway back, we aimed for a tree trunk that could serve as a stool and resting spot. After a minute, we went to the boardwalk we had taken over the dunes; I sat on a bench one-third of the way across while Tom went for the car, which he parked at the beginning of the walk. We made it back to the car and looked at the clock – We had walked for an hour, which pleased us.

Dinner was next, at the same place we had gone on my one-year anniversary, which Tom remembered as the place where his post-surgery painkillers wore off following his finger surgery, not a good association. Millie had been with us that time, as our driver, and she had taken us, the walking wounded, home.

My capabilities here, at the two-year mark, (so that I can compare my three-year abilities to my two-year):

Leg: I am walking reasonably well on the L300, which I’ve had for two weeks; at the end of next week, I will be wearing it full-time. I need to work on not circumventing below my knee to get my foot around. I need to strengthen my hamstring and a couple of muscles in my outer thigh. My quads are good. I walk twice as fast with the L300 as without. I go to PT once a week.

My next walking goal is to walk to and do the 2-mile loop on Eastern Point. That’s with a cane. My without-a-cane walking is lurching and unsteady, either with or without the L300.

Arm/hand: I cannot yet open my hand or even reliably point my index finger, although I have straightened it (a tad bent) twice. The Saebo has been a disappointment although my elbow control has improved somewhat; I can lift my elbow out sideways to 90 degrees. I have been using the Saebo since June, which adds up to a LOT of picked-up balls. I go to OT at MGH once a month.

I have not yet been able to row solo, although I can walk down the gangway to and board the Siren Song, along with using a splint on my left and my good right hand on the oar, with Tom on the seat in front of me. I will work this winter on grasping a PVC pipe of the same diameter as the oars; this includes both extending my fingers to open my hand and gripping.

Although I can get down on my hands and knees, Someone else – usually Patricia - must straighten my fingers to do so.

I am still using a permit to drive, so I am dependent on someone - again, usually Patricia – to get around, although when she is busy, I take a cab or ask someone else for a ride. My road test is scheduled for a month from now. Life will be very different - improved - then.

I cannot yet walk Turbo by myself yet – he pulls on the leash too hard AND does not cooperate when I try to put his harness and leash on one-handed. He sits, but does not like me to put his front legs through the openings; instead he pulls out the first one while I attempt the other. That needs practice and additional training, by which I mean bribery. He is still a joyful, bouncy companion.

I fix dinner, but have rarely folded any laundry other than napkins. The laundry I do fold gets wrinkled. I vacuum on occasion and keep the bathrooms clean.

General attitude: I am happy most of the time and very dependent on the online stoke survivor community for encouragement and other support. I enjoy writing my blog. I am sometimes aggravated by the attitude of some people I deal with, but find most people - especially strangers - helpful and considerate. I see my psychotherapist once a week and she helps me determine ways to protect myself from insensitive people in my life, the ones I have not been able to jettison.

Work: I have been reduced to being stuffed into a copy editing and writing box at the paper, although I recently was assigned to cover a small bit of sports, which I don't mind, but is certainly not my passion. The writing part is, though, so that makes up for the rest. Feeling like a part of the editorial team is difficult, given my remote location, which was never a problem before, even when I was GM.

As the 2-year anniversary approaches ...

2011-11-10T13:18:00.001-08:00

When I look back to my blog entries from about a year ago - as my first anniversary was approaching - I realize that, although I have entries like "what I learned in a year" and "what I'm grateful for," I can't really tell what I was capable of at that time, so it's hard to have a handle on how much I've progressed in a year.

Because of that, I am thinking about an entry along the lines of a status report at the year 2 milestone to look back at on my third anniversary. Just thinking. I used to keep a long list of potential blog topics, but I can't find the file. Big surprise?

I'm going out now to practice 3-point turns in my driveway. I can even venture illegally - I have only a permit - down my street because it's a dead-end and none of my neighbors would care. In fact, Jerry, our neighbor who died a year ago, used to volunteer to take me out illegally - without even a permit and on city streets - any time I wanted; he was the sweetest man alive. Is it possible he volunteered BECAUSE he was dying? Just joshing you, Jerry - I love you still - you could empathize with me for real and not just claim to understand what I was going through.

vacation

2011-11-07T08:03:00.000-08:00

A few days ago, I had a laughter-and-tear-filled lunch with three friends. Each of us has her own physical and/or emotional burden. I, of course, am I; CP is in constant pain after being a guinea pig for experimental back surgery; D lives with uncontrollable, debilitating depression; and EMF lives with a syndrome not well-recognized by the current medical establishment nor society. At lunch, CP referred to D’s recent month-long stay in a clinic (which was wildly successful!) as her “vacation.” I then started thinking of all of our burdens as vacations – that is, a hiatus from our former (real?) lives - caused by an unplanned event that derailed our intended trajectories. By “vacation,” I certainly don’t mean a time relaxing and enjoying new sites, but rather, a stepping away from our lives. During my vacation, I have worked harder – professionally, mentally and physically - than ever before. Even just walking around my house expends more energy than I expect. Every last thing is harder, but I enjoy rising to the challenge. I am proud of all four of us for being happy with each other and with our lives despite our disabilities, for being able to laugh until we cry and cry until we laugh. And hug - man, are we good huggers!
As you know, my unplanned derailment smacked me away from the best life I could have engineered for myself and I fight every day to pry away the effects of the stroke from that life in the hope of uncovering something better. As Marilyn Monroe allegedly said: “Sometimes a good thing falls apart so that a better thing can fall into place.”
Vacation-wise, I do get out of most housework - except for meal-prep, which I love - dusting, which I have no excuse not to do - and putting away dishes from the dishwasher. Although glasses are sometimes imperiled in the process, I have yet to break one.
And, like a conventional vacation, I do see places and experience and learn things I otherwise would not - the inside of MRI machines, PT gyms, Theraband, a view of bubbles being injected into my heart during a “bubble test” to check for a hole in my heart, and so on. And I have had the opportunity to learn more about stroke than I ever wanted to know – information I hope to never need again.

2011-11-06T07:16:00.000-08:00

Tom, Turbo and I spent yesterday out in our yard. Using the L300, I scrambled - and by "scramble I mean "walked very carefully " - over the rocks and down the hill to our sitting area down below. "Down below" is a flat area with a wrought iron table and chairs that is just past a large granite outcropping that, from above, creates a sheer cliff and, from below, a wall. Sitting in the sun at the table next to a mound of Montauk daisies, with gaura blooms flying like a swarm of small pink butterflies against the granite wall, was heaven. I eventually moseyed my way through a weed path - what? weeds in our yard? - and sat on a rock near Tom, who was chainsawing, splitting wood with an axe, and piling brush from the small locust we lost to Irene. That's heaven for him - getting the large-scale yardwork done and not having to worry about me getting into trouble in the house or the yard somewhere; he's right: I am a little too adventurous at times.

All of it was made possible by my L300. It was definitely something I could not do previously without my brace, and now I can. Going uphill was harder than going down, but it was all doable. Have I said lately how much I love that gadget?

Once again, I can imagine next summer as entirely different from this past one. It's an annual hope I have every fall.

the bad with the good...

2011-11-04T08:07:00.000-07:00

My L300 is continuing to do its work: in the ramp-up conditioning phase, I'm up to wearing it 1.5 hours per day. My leg muscles in my shin are still fatigued, but they'll get used to it soon.

Still no significant progress using my fingers/arm, which makes me disappointed with the Saebo.

I had some calendar issues this morning - not quite back to where I was 18 months ago, but significant. It was keeping track of Millie, which is tough at best anyway. I had yesterday and today confused regarding a job interview and picking up her cousin and her boyfriend in Boston. I HATE losing track of two 20-year-olds visiting from CA and Sweden; it made me feel as though I had brain damage or something.

Bad news: Our dear friend and housemate Patricia will be moving out because her EMF-sensitivity is making her so sick. She's looking for a place not too far away that has no cell towers or Wi-Fi. While I am supportive of her leaving to regain her health, I am bereft at losing her in my daily life. All of us will mourn, especially Turbo.

This is the story of my life ... everyone goes their separate ways." - Millie Manning in "Mecanique" on her CD Kaleidoscope.

My 2-year anniversary is approaching ... Nov. 12 is the date. I had to check a calendar just now to make sure it's a week from tomorrow, which is when I thought it was. How to commemorate that day, other than a walk with Tomand Turbo on Crane's Beach? What should I blog about? Any suggestions?

the beach

2011-11-02T05:27:00.001-07:00

Since receiving the Bioness L300 last Thursday, I've been testing it on a variety of surfaces that I was not capable of navigating without any brace: lawn, loose gravel and sand. Yesterday was the sand day - I walked to the beach at the end of my road (approximately a third of a mile); walked for 5 minutes on both loose, dry and wet, firm sand; then walked back home. The entire outing took about an hour and finally being on the beach braceless reminded me of when we first moved to GLO and I used to walk down the street every day to see the Boston skyline in the sunset.

Next summer will be very different from this past one - without the massive, hot, sticky brace. I can't wait! Of course, before then I'll be testing it on snow and ice, something I can easily wait for.

dreams

2011-10-26T08:18:00.000-07:00

For about 6 months post-stroke, I did not dream - or I didn't remember my dreams - isn't that the same thing? It was yet another loss in my life because I have always enjoyed my dreams. Of course, I had bad ones at times: anxiety dreams - you know the kind ... ones in which everything goes wrong and you make all the wrong decisions, like having to go take a test in a subject you've never gone to class for, then you can't find the room, then you don't have a #2 pencil ... and so it goes. The other is the one in which you have to find a restroom, but they are all full, have long waiting lines, are in maze-like locker room or are filthy; you wake up having to urgently take a leak.

And then there are recurring dreams: I have a "dream house," one that appears only in dreams and I immediately recognize it as home, as mine. In my dream, I tour the house: parts of it are lovely, while others are bizarre or are in desperate need of renovation. I have not had that one since the stroke.

My dreams have always been in full color and, in them, I am absorbed in the present moment, which makes me wake up refreshed.

6 months or so post-stroke, my dreams (or my ability to remember them) returned and - here's the kicker - I was NOT disabled. My first had me at the back door letting Turbo out. A coyote ran out over the rocks and grabbed him; I flew off the porch and successfully pulled them apart - man, I could have used my cane then!

After that, I have been disabled sporadically - sometimes obviously and others not until I could use it. If I had a coyote-attacking-Turbo dream now, I bet I'd be disabled, have a brace that lets me run and a cane with which I would whack the coyote- or maybe I'd be able to throw away my cane as I ran. I'd still be successful because my dreams tend to resolve without trauma. Even if they awaken me, I wake up reasonably happy.

I am grateful that I am once again able to enjoy my dreams.

victim of Velcro

2011-10-25T10:47:00.000-07:00

Pre-stroke, I thought Velcro was invented by a genius, a guy who could come up with a practical application for a burr stuck in dog fur. What would he do if he thought about slugs and ticks? I admired Velcro's handiness, and even liked its sound ripping apart - why on Earth would that character in "Garden State" invent "silent Velcro"? And it was helpful in SO many ways: easier than sewing a zipper into a Halloween costume, better at attaching gismos to poster board displays and dance outfits.

Post-stroke, though, I have a new relationship with Velcro: an antagonistic one...I HATE it and apparently it HATES me. It gets hopelessly tangled so that my shoes are stuck together - when they are off of me. Ever try to one-handedly shake things apart when they are Velcroed together? 4 straps, that is. It's slightly easier than tying shoes one-handed, but only if I use my foot, legs, elbow and teeth, too. And there are Velcro straps on every splint; of course, there would be no splint-wearing without Velcro, which would be a blessing. Yes, splints are right there on the list with Velcro, except for the one that stretches my hand muscles.

And I've got slippers that close using huge pieces of Velcro - the tongue comes up, then the outside flap, and the inside flap. If they are not flat across each other AND tight enough, I have to rip them open and start again. Ripping them apart involves my teeth - I bite a flap and use my right hand to do the rest of the yanking. Does anyone out there fancy biting slippers? Even their own?

My beloved Saebo, which now has hero status for teaching my index finger to point, has approximately one billion strips of Velcro. Is it any wonder that I cannot yet put it on by myself? It's this delicate piece of mechanics - I'm not supposed to pull on the springs too hard and I've already yanked off two of the straps and the thumb's rod and fingertip, so I'm clearly not gentle enough with it. How do I unVelcro Velcro when I'm supposed to be gentle with what's attached to it? The words "Gentle" and "Velcro" do not belong in the same sentence. Not. Ever.

when others forget

2011-10-24T10:25:00.000-07:00

Yesterday when I was cleaning the dining room, I was excited to find a missing earring, one of a pair that I can put on by myself, but haven't been able to wear in about 4 months because one was missing. Shows you how long it's been since I cleaned the dining room. My point was is that I was very happy to have it and put it in the zippered pocket of the fleece I was wearing. Later in the day, reaching into the pocket, I couldn't find it and complained to my husband about it - I KNEW I'd put it in there and now it was gone. He got the look that says he's not buying my memory of it going into that pocket. "Check the other pocket," he said in a real attempt to be helpful. With a big smile, I reached my right arm across to the left pocket and started unzipping its zipper. "Never mind," he said, "it was a stupid suggestion." I kept trying, of course, and finally got it unzipped about a minute later. I reached inside, and he said, "You're right - it wasn't a good idea - you can stop anytime now."

"Not there," I announced.

After everything the stroke has done to our lives, how can he forget that I would never in a million years put an object in any of my left pockets?

index finger

2011-10-23T06:39:00.000-07:00

This morning, I took off the forearm/had splint that I have been told to wear every night - I'm specifically not saying that I wear it every night. It is designed to keep my hand stretched out for 8 hours/day.

This morning, I took it off and started some simple hand exercises, which I do every morning. But there was a difference this morning: my index finger straightened. I tried to get my middle finger to go along for the ride - they do work together using the Saebo - but she is a stubborn one and stayed bent. My index finger though, performed repeatedly and I'm planning to have her practice all day long. Pretty soon, I'll be pointing at things.

Off to Saebo now!

A new four-letter word: "just"

2011-10-21T13:07:00.000-07:00

I love words; I love semantics. And, if you can believe this - or even if you can't - I love punctuation.

Post-stroke, I have decided that, in addition to Velcro (TM), I hate the word "just." I'm leaving my Velcro rant for some other day.

I hate "just" as meant as "only," "as in "just do this." As a technical writer of operator's manuals for many years, I learned to avoid the use of "simply" when providing directions because it is condescending. "just" falls into the same category when it is used to minimize the whatever-it-is that follows. When I was first home and did virtually no weight-bearing on my weak leg, someone said "just kick the ball for him [the dog, I think]." My response was,"with which leg would I do that?"

And I always love it when a PT or OT says, "Can you just do this?" referring to something I can't do. My response inevitably is,"If I could do that, I wouldn't need you."

Some uses are okay: "just" as in "recently," like "I just fell down," is fine."just" as in "fair" is spectacular, as words go. As adding emphasis, as in "This just isn't fair," works just fine for me.

I hear "just" and I just snap.

Just beware, that's all I'm saying.

walking on knees

2011-10-19T05:46:00.000-07:00

Yesterday at the gym, after staying on my hands and knees - actually, just my affected hand and both knees - After getting in the two-hands-and-two-knees position, I lift my right hand over my head for a count of 60. To continue - after that exercise, I walked on my knees across the stretching room and back. I did it without circumventing (swinging my leg around from my hip as I move my foot forward), which I always do when walking regularly;circumventing aggravates bursitis in my left hip, which prevents me from walking as much as I used to and makes it very uncomfortable to lie down; before we go to bed at night - or at 7 (which is the time we go to bed, but I don't think qualifies as evening) Tom keeps asking me if it's going to be "another rolling-around" night." I shift position frequently when I just cannot get comfortable and it wakes him up most of the time.

Tomorrow I'm seeing a few leg brace reps in my PT's attempt to find me an AFO I will wear. I am leery because I don't want to once again have my muscles atrophy and depend on my brace to walk; it was too much work to get where I am to give it up again.

One of the reps will be having me try out a Walk-Aid, which my OT says will have me continue to use those muscles. I'm thinking I'll continue to go without most of the time and use the device only when going to a dicey situation - beach, lawn, rocks, etc. It's what I do now, but it worries my PT, who thinks I'll never be able to walk well without always using the correct AFO for me.

my arm at work

2011-10-16T04:01:00.000-07:00

My arms act as cooling fins in bed at night. I tend to pile on blankets because my affected side chills so easily. Once in bed for a while, though, the heat builds and I need a way to cool a little, so I pull one or both arms out and keep them outside the blankets. Unencumbered by the blankets, my arms are now able to get back to my 24/7 job of stroke recovery.

Last night, I used my strong arm to stretch my affected arm over my head and settled it into its “sweet spot,” where it rested unaided. I then slowly moved my affected arm in a 180-degree arch, bringing it to lie on the bed by my side. As always, my lack of proprioception made me believe that I made a perfect arc with a straight arm. I tried again – watching this time. We leave a nightlight on in the master bathroom during the night so that I can make it there safely, so there was enough light for me to see my arm. I was able to repeat the motion, but my elbow and my wrist were bent, which I could now feel – because I could see they were, I think. I repeated the exercise a few more times – just because I could. Because it’s rare, I think, it’s very rewarding now whenever I can successfully do something.

Hurrah for me!

on my stomach

2011-10-06T10:10:00.000-07:00

My back that started hurting a few days ago has prevented me from walking as much as I normally do AND Saeboing as much as I am directed to (because standing that long hurts too much).

Although my back pain is a pain, one step forward came out of it: I found a cream (Tiger Balm) that makes my back feel better and, for Tom to apply it to my lower back yesterday, I laid down on our bed and GOT ON MY STOMACH. It was the first time I have successfully laid on my stomach since having the stroke!

Thoughts about a stroke survivor’s point of view

2011-10-05T08:04:00.000-07:00

In the two years since I had the stroke, I have viewed it in many ways and have observed how other stroke survivors view the strokes they have had. What I’ve identified are:

Life, interrupted
Course correction
Lesson in gratitude
Punishment
Life is unfair
Why?
My own fault
Challenge to be overcome
What if it hadn’t happened?
Opportunity to improve myself or my life
Learning opportunity
Increased empathy for and connection to others with a chronic illness or a disability
An increase in religious faith
Activism about treatment or handicap-accessibility

Some of those attitudes are transient and some permanent, some overlapping, some sequential, and some productive, while others are a waste of our increasingly valuable time.

Stumbling through these attitudes toward the self that emerges from it all is painful for both the survivor and for his/her beloveds to watch.

home renovation

2011-10-01T15:32:00.000-07:00

As most of you know, our antique house was neglected for decades before we bought it and we have been renovating it since we bought it. When I had the stroke, we were mid-stream in working on the library. I do the painting here, and I had painted just half the ceiling, some of the window trim and none of the walls before the stroke struck. To continue work on it, my brother Brian finished my job and then proceeded with his - new windows, trim, etc. Ever since coming home, the quality of my work on the window mullions has bothered me because there was too much missed area. Today, I worked on finishing the painting of the areas where primer showed; I got about 2/3 finished before my lower back started bothering me and I had to stop, take Tylenol and lean into a heating pad. I'm hoping to finish it up tomorrow. Then it's on to painting under the window in my office - where after painting it years ago, we moved a radiator and the behind-the-radiator area needs its patches painted. Post-stroke, it feels great to contribute to the never-ending project.

exiting pool without a chair

2011-09-30T12:58:00.000-07:00

This morning, Patricia and I dropped into a water aerobics class and, even though we've been in the pool at the Y many times before, this morning was the first time I ever got out of the pool without using a chair to help me. Instead of pivoting and dropping into the chair as I've always done before, I didn't even ask for a chair; once I got to the top of the stairs - about 6 - I put my hemiplegic foot on the short ramp down and put my right next to it. There were then two small (2 inches, then 5 inches) level changes, left foot first, to get to the tile deck around the pool. I navigated them after figuring out beforehand how and where my feet should go and when my weight should shift. It worked fine. Of course, I had to work extra hard to not twist my ankle so that my PT wouldn't be proved right about me not wearing my AFO.

It's a minor accomplishment, but it meant that, as the first one out of the pool, with a score of elderly women behind me, no one had to wait while a lifeguard fetched a chair from the office and set it in place for me. I was not a spectacle - something that is very important to me, especially now. I am visibly different enough - I don't like to give people a reason to watch me.

It was a small accomplishment, but it had a a significant impact.

new AFO

2011-09-29T12:36:00.000-07:00

My PT is intent on getting me a new, smaller, less objectionable AFO because I don't wear mine now - except on uneven surfaces: lawn, beach, cobbles and deep gravel. So much for spontaneity - although that's long-gone in my life anyway. My PT went on today about how I'm going to "break" my ankle as a result of never wearing my brace; most therapists have said "sprain," but Mary pulled out the big guns and said "break" and "which is the last thing you want to do." She's right about that, but I am REALLY careful. She thinks I'm going to step on a rock on the sidewalk, on something someone has left on the floor or step wrong on a curb... and then ... snap! I am as diligent, though, as an 80-year-old walking on ice, afraid to fall and break her hip. I inspect the ground/floor/sidewalk and the angle of my foot/ankle before each step. I'm not supposed to, but I walk looking down at my feet, not straight ahead.

At my PT appointment next week, she has a brace specialist coming in to hear me out about the problems with my current brace and to suggest an acceptable alternative.

My hopes for the next brace have many facets: (1) comfort - it would be a huge improvement to have it not stab the back of my knee when I crouch or bend my leg far and have the "hinge" not pinch my skin at the back of my ankle unless I wear a thick sock; (2) vanity - I would like to wear many of my pre-stroke shoes and not have to wear a size 9 on my left and size 7 on my right; and (3) function - my current AFO interferes with me going up and down (mostly down) hills (this includes all gangways to get to/from boats) because I have to ram my heel into the ground (even hardtop, which works with only 1 pair of shoes I have), then, as I step forward and I move the toe of my affected foot toward the ground, the brace pitches me forward and I have to catch myself with my unaffected foot. I don't mean to whine, but here I am, whining. Louder: I HATE my ridiculously huge brace!!!!! Yes, I'll admit that it enabled me to be released from rehab and go home a mere 4 weeks after having the stroke, but that was then and this is now, obviously. What was appropriate then - for example, having someone with me every second, even in the bathroom, would be completely unacceptable now - is no longer appropriate two years later.

Speaking of 2 years, I told my husband yesterday that to acknowledge the two-year anniversary of the stroke Nov. 12, I want to do something I haven't done in 2 years. "Have pancakes for breakfast?" he responded. What a clown. "I should have my new brace by then. How about we take a long walk on Crane's Beach?" He agreed, along with offering to take the day off it that was necessary. It turns out that it's not because, if I read the calendar correctly, it's a Saturday.

What if I had died?

2011-09-28T05:42:00.000-07:00

Many fiction writers use the “what if?” approach when dredging for ideas. For example, “What if the world were inhabited by both humans and wizards?” From there, we get to: “Where would the wizards go to school?”
And, Tom-Sawyer-like, many people try to imagine how people they know would respond to their death. Of course, there’s also “It’s a Wonderful Life,” based on the premise of someone never having lived at all.
I think that people who live through life-threatening situations ask, “What if I had died?” Maybe not, maybe I'm the only one to do that.

Not to be morbid, morose or melodramatic, here are my thoughts about how things would be should the stroke have killed me when it struck ...

Let’s start with Tom… What would Tom’s life look like? From the experiences of the husbands of two dear friends who died young, I know that single women pursue – sometimes aggressively – widowers who are handsome, compassionate and rich. And Tom’s a pushover. For the past two years, he would not have been hounded by worry about me, my health or my safety; would have continued to show up for work at 7 a.m. and feel more successful there; would be further along on all his renovation projects on the house; and be remarried. My ashes would not be in an urn on a mantle, as I have asked him to do – the idea is that the second of us to die would also be cremated and our ashes mixed together to be scattered throughout the gardens of Bayberry Ledge (our property in GLO), a fitting place to grow into flowers and trees – but not too many trees, since Tom has spent years judiciously clearing the land. Our gardens would be two years closer to, not farther away from, being included in Gloucester's annual Garden Tour.

And our kids? My death would have affected them deeply, but they are both resilient, adaptable young adults who have weathered disappointment and challenges gracefully. Tom and I have told them that, if we were to die at our present ages, we would not have gone too early or been deprived of anything – we have had happy, fulfilling lives and have seen our children grow to adulthood, which is more than many people can say – and that, while we would like them to miss us and think of us every day, we want their grief to not be angry or overwhelming and we want them to acknowledge that our lives were well-lived.
And to remember while raising their own kids that, per George Bernard Shaw, parents teach better as a warning than as an example.

Regarding my job, my departure from there would have been sudden, but clean. I would not have spent the past two years wrestling with my boss to retain my responsibilities after I became incompetent and uncooperative, although I have not recognized either. We would have remained close friends after my death and he would have cried out of grief after the stroke, instead of being continuously frustrated with me. I would not feel this regret about my behavior.

Patricia and I would not have become best friends. I would not have been befriended by a dozen inspiring stroke survivors online.

To anyone I talked about here who disagrees with what I wrote, please feel free to comment and straighten me out.

in balance

2011-09-25T07:45:00.000-07:00

Yesterday Tom was running wires in our house - pulling new wires from sconce connection to sconce connection to replace the old wires. At one point, he asked me to monitor a wire going into a panel, which he was pulling from the other end. To do so, I stood on a landing in our back stairwell and pushed a red wire into a hole, with the wire unfurling from a spool behind me. As a result, I was standing with my feet spread wide and pushing up with my unaffected hand, sliding my hand down as needed; there was nothing except my feet to stabilize me and, although I rocked a lot, I never lost my balance. One frequent question right after the stroke was whether I had trouble with my balance - I really didn't. On occasion, when I was lying down and rolled my head from one side to the other, the room would spin; a couple of times, when I was standing, if I pivoted quickly, I lost my balance - once in the garden and twice on a large landing just two steps up our main staircase. All three times, I was unhurt and remained convinced that I did not have a balance problem.

As happy as I was to be stable stuffing the wire up without a problem, it seems as though I have actually been worried about it.

Last Thursday, on my return home from MGH, I could not get the information about the train track early. By the time I found out and was approaching the door to the platform, the train and track were announced, so a crowd swarmed me as I went through the door. This was exactly the timing I have worried about ever since I started using the train: (1) being swept along by the crowd, people jostling me, (2) suitcases and bags in my way to stumble upon, plus (3) having to walk as quickly as possible not to delay the train's departure and (4) getting on a car farther back than I needed and making my way up the aisle while the train started moving. I cannot walk on a moving train. That day, though, I made it through the crowd and around the obstacles. Two cars behind the one I was headed to, a train employee asked how I was doing and said he'd make sure I got on the correct car in time. I made it and as soon as I was on board, he waved a signal and the train started. For 30 feet, I held onto the luggage rack that runs the length of the car above the seats and I made it to the closest seat without falling. Success!

And yesterday afternoon, we (Tom, Patricia and I) went out on a schooner in Gloucester Harbor. After I crept down the gangway (with my AFO on this time) and was climbing up and down a few steps to get over the gunwale and onto the deck, the owner/captain came up to me and introduced himself, saying that a mutual friend had told him I would be on the ship that day. I was obviously easy to identify - the only one using a cane while boarding. A large, well-known amiable guy, he offered to help me in any way he could, help I never needed. Later in the cruise, Patricia went to chat with him and when she returned to me, she reported that he said he had heard of me and my "courage." That, of course, made me cry, just as I am tearing up now as I type this.

What more can I ask for as a reputation than to be known for courage?

cheerfulness

2011-09-20T07:02:00.000-07:00

These days, it's hard being my husband or friend. Everyone, including my psychotherapist, encourages me to cry when I feel like it in order to release the emotion instead of bottling it up; yet, when I cry, these same people try to cheer me up - usually by reminding me of all of my blessings and suggesting that I be grateful for them. Well, you know what?!? I AM grateful for everything I have, but I'm grieving for everything I LOST. It's not rocket science. This morning I got frustrated in my attempt to don a camisole and asked Tom for help. Instead of doing what I asked - unrolling the back of it - he decided I should be putting it on a different way. Well, I was already frustrated because I had tried to do it by myself for too long before I asked for help, so I asked him - in a not-very-patient manner to please do what I had asked him to. (This falls into the same category of me asking him to get my blue coat from the closet and he brings the black one because he thinks it's more appropriate for the weather. Why can't I decide what coat I am going to wear? Am I 5 years old?) Then he got frustrated at the perceived criticism and snapped.

I certainly understand his frustration - and I know this life he has is not the life he wanted or planned for. I feel trapped enough for both of us, though, and part of that trap is the fact that those around me can express their emotions - sadness, disappointment and frustration - but as soon as I start, I am supposed to stop and put on a cheerful face. No one, including me, wants me wallowing in self-pity, but the reality is that if I were to honestly express my emotions - as people encourage, but do not allow - I would cry all day every day. I know that would be an awful life - for me and for those around me - so I choose to go on good-naturedly and encourage others, letting them know that it's not unbearable after all.

Eureka!

2011-09-15T09:34:00.000-07:00

I think I finally figured it out - what specifically caused the stroke I had. I have known all along that it was caused by a dissection of my carotid artery, something caused by trauma and/or strain while doing something like weightlifting. Within days after I had the stroke, I told the docs that I was a rower and - Bingo - that was the strain. Within the preceding two weeks, I had rowed in the two hardest races I've been in - the Head of the Weir in Hull and the so-called Northeast Rowing Championship in Plymouth. The former was on Halloween 2009 and the latter a week later. Both were tough - Hull because the waves, wind, tide and currents caused close-to-impossible conditions and Plymouth because a mistimed starting gun put us in last place from the get-go.

Both took everything all of us had - the kind of races that had us collapsing on the beach afterward. In the first one, conditions were so crazy that out of 60 boats starting, 24 finished. Two of the most experienced rowers in my boat said that it was the worst conditions they had EVER rowed in.

Until yesterday, I had thought that one of those races was to blame for the dissection.

Neither I nor any of the other rowers like thinking that this fun, athletic sport we enjoy is responsible for causing strokes. I have a high school friend who runs ultra-marathons:100-mile races, often up and down mountains. He has been in some that you have to have completed a certain number of miles in the first 48 hours or you are eliminated. Can you believe that some people run for 48 hours and then get kicked out of a race? This friend, though, in addition to his distress about me having a stroke, objected that it was caused by something "so healthy" and "good for you." "Tell me that's not true," he said. "Tell me that you can't have a stroke because you're doing something like rowing."

Since the stroke, I have wondered which it was - the race 4 days before the stroke or 11 days? Which one was "harder"?

I finally decided last Saturday while I was watching the 2011 Gloucester Harbor Race and was feeling nostalgic because in 2009, it was my very first race. A rowing friend (Bill) - maybe because his adult daughter was recently in a terrible accident in Italy - started talking about some of the terrible things that have happened in our rowing circle. He brought up the stroke I had and remembered that we had rowed together in the last two races before I had the stroke - and that's when it hit me - Bill was sitting in front of me during a practice row and while I was pulling hard, my oar crabbed - turned sideways in the water and went where the water wanted, not where I wanted. In such a case, the rower is supposed to lift up on the butt end of the oar - the one in our hands - to free the blade from the water. I had successfully done so numerous times before, but this time, I forgot and intuitively tried to wrestle the oar back under my control. The oar was still where it should be, between the thole pins on the gunwale, and I strained - there's the word! - as hard as I could to control the oar. In the process, the force of the oar working as a lever against the thole pin broke the pin; I had never heard of anyone breaking a thole pin before, but there it was - one end in the hole in the gunwale, the top half torn off and in the water. Apparently, in the battle among me, the thole pins and the oar, I must have broken first, then the thole pin, leaving the oar intact.

I remember who was on the broken-pin practice row, and it means that the practice was for the Head of the Weir. So, it was not directly one of the difficult races that did this to me, but a practice row for one - and it wasn't the row itself - it was a mistake I made during the practice row. An accident, of course, but 12 to 15 days later the resulting clot started spewing pieces into my brain.

Now I know.

Given how I've wrestled with figuring out exactly when/how it happened, I have sympathy for those stroke survivors who never learn the cause of their strokes and there are more of those than I expected.

to my chin

2011-09-13T06:54:00.000-07:00

One of the exercises my Saebo OT gave me at my last session with her was to, using the Saebo, pick up a ball from in front of me, touch my chin with it and then drop it in a bucket, also in front of me, but a little to the right; I am to do it as many times as I can in 45 minutes. The first time I did it, I could strain every muscle (including my toes) without my hand making it very far up; it was 45 minutes of never getting anywhere near my chin. I progressed, though, so that in the second session, I brought the ball up to my waist, which most of you know is nowhere near my chin; another 45 minutes of failing in my task.

Two days ago, I got closer to my chin and called Tom into the room to witness it; he estimated it was about 10 inches below my chin. Since I lost my eyeglass strap a couple of weeks ago, I have hooked my reading glasses over the top of my shirt - yesterday, I reliably got the ball to the bottom of my glasses, which I measured as 8 inches. Getting it to the top of my glasses will be 6 inches - and it's almost there! And I hope to do it this afternoon. The exercise is to improve my elbow flexion, which will help me with other exercises.

uneven strength

2011-09-11T04:26:00.000-07:00

It's easy for me to compare my capabilities now to those before the stroke. My OTs, though, compare my affected side to my unaffected, as though before the stroke, they were equally capable. In reality, I have always been overwhelmingly stronger and more coordinated on my right side - significantly right-side dominant. In evaluating my grasp strength, an OT will have my right hand grasp the handle as tightly as I can - and I measure like a strong person; then he/she puts it in my left hand, which can hardly hold the darn thing, His/her goal, I think, is to get my left where my right hand is now. And you know what? It ain't gonna happen - my left has always been weak and uncoordinated. And I would be thrilled to have it back as its weak and uncoordinated self. I used to try writing and eating with my left, with no success. I am especially grateful that it was the right side of my brain that was damaged - I got to keep my right side of my body intact and it has been able to do everything I've needed it to do.
There's also the fact that every muscle on my right side is stronger than it's been in my life. The OTs are comparing apples to oranges, as the phrase goes; A better comparison would be tomatoes: My right hand is now a big juicy beefsteak, while my left, at its best, was only ever a cherry tomato. Why now, am I shooting for a beefsteak on my left? And how likely am I to get there when it's genetically a cherry? No amount of water, weeding and fertilizing will get it to beefsteak. None. The best I can hope for is a sweet, unblemished cherry.

I am not discouraged by this - it helps to know that I'll be pleased with my hand recovery long before my OT is. It's a significant role reversal: I have a realistic goal and she does not.

hard body?

2011-09-10T05:44:00.000-07:00

Ever since I had the stroke, every time I saw my boss, he would tell me what progress I've made. example, during one visit, I remember him telling me that I got into and out of his car far more easily than the previous time and that I followed conversations better rather than sitting and giggling, as I had the time before. That one made me mad - I am NOT a giggler -I had simply been very happy to be in the office and spent much of the visit grinning. Grinning is not giggling!

Anyway, I always enjoy it when people tell me what progress they think I've made. I have one longtime friend who is an OT whose evaluation I especially enjoy - she does the standard test of putting her first two fingers against my palm and asking me to squeeze as hard as I can.

Last Thursday, though, my boss said nothing about any progress, so I called him yesterday and put him on the spot by asking what progress I had made since the last time we'd seen each other.Amazingly, he said I had looked "more "chipper, more fit and 5 years younger" than I had in several years. I said,"But I had the stroke 2 years ago - don't you mean in the past two years?" He answered "No, in the past several years." Later, he said,"You looked fabulous." Yes, my clothes consultants worked wonders with this half-a-body body.

His response got me thinking about how I think about my pre-stroke self - I think of myself as being struck down in my prime, at my very best; I was 52 and a well-conditioned rower, after all. When he said that, though, I started to wonder about my self-image, past and present - and think that perhaps my prime is yet to come. Is that possible? I certainly am now used to working on my body more than I ever have in the past. Patricia has said that we will eventually both be "hard-bodies" from all the exercise we get and weight-lifting we do at the Y. I like the idea of someday being buff. And I have a niggling bit of doubt that it ever can - or will - happen. I don't find it a ridiculous thought, though,as I did a year or so ago. Am I setting myself up for disappointment yet again? That would be like me.

vanity

2011-09-02T17:41:00.000-07:00

What a silly thing... Yesterday I went to the newspaper office on a social call... and wore make-up for the first time since the stroke. My eyeliner and mascara ran - but not much because I used a very light hand applying them - when I cried from nostalgia a block from the office.

The day before, I had Patricia and our friend Lisa consult about what I should wear. My goal, I told them, was for everyone to say, "Oh my God, she looked great," after I left. Everyone told me that while I was there, of course, but I figured that it was after I left that the truth would come out. My boss told me that I looked "skinny," which is a compliment from him because, sweet as he is, he has little respect for overweight people and admires those who stay lean. Looking skinny was the result of not any weight loss on my side, but the talent of my clothing consultants. First, they looked through my dressing room for a "boob shirt," as coined in the movie "Must Love Dogs," but they failed - there are none of those in the wardrobe of a very small-chested woman. "Skinny" was the best they could go for, even after they helped me put on a push-up and padded bra from my vain pre-stroke days.

While dressing, Patricia pointed out to Lisa the trouble I go through every morning to do the simple task of getting dressed. Other women "throw on" three outfits a day as they plow through life. I struggle into one outfit in the morning and, when I do it, I have to keep in mind the weather and what I'm doing throughout the day so that I know what is appropriate to dress in during my one dressing of the day - it's easy to add sweatshirts and jackets, but not to change completely. And a short-sleeved or no-sleeved shirt as the base is imperative to using the Saebo twice a day.

Given how time-consuming it is getting dressed, I sometimes opt to sleep in my clothes at night AND then wear the clothes the next day. Some people identify that practice as a sign of depression, but to me it's just being practical - the advantage is two-fold: I don't have to bother getting changed AND I keep laundry to a minimum, something I'm self-conscious about because I no longer do my own laundry and it bothers me to be waited on that way. In fact, laundry was close to being my least favorite household task, although I'd LOVE to be able to do it now.

Despite my wearing of the same clothes multiple days in a row, I am NOT depressed... I keep an eye on that because all of the medical professionals around me expect me to be. Yes, there are many things in my life right now that really suck, but, given that depression is a chemical state, it might be triggered by, but is not dependent on, my situation. I think that every depressed person has reasons - valid ones - for being depressed, but I don't think depression is situation-based. From the beginning of my recovery, everyone around me tells me that after having a stroke, it would be "perfectly understandable" for me to be depressed. But, given my tendency to fight pretty much anything, I will not allow myself to go down that predictable path. Not that sheer will prevents depression - in fact, it probably exacerbates it because it is yet another thing, another stress, to fight in my battle against my body's own biochemistry.

Actually, it offends my sense of vanity to even admit that I keep my clothes on for several days, don't shower daily and dunk my head under the faucet in the morning to tame my bedhead - and I don't always do that.

But I did successfully get make-up on yesterday morning - and, man, I looked good! And I wore earrings. Maybe my life CAN return to normal.

a 30-bucket morning

2011-08-29T12:46:00.000-07:00

I have 6 balls with my Saebo and, each time I transfer all the balls from one container to another, it's counted as a bucket. So, 30 buckets correspond to 180 balls moved. The most I've moved before is 126. Unsuccessfully dropping every other ball and doing a "re-do," 30 buckets translates to 270 successful grasps of a ball. In addition to grasping balls, I have become proficient at multiplying by 6 and bending over to pick up a ball from the floor.

A 30-bucket session ( in 45 minutes) is a successful one in my book - always my target when I start a session. I often hit my goal. Eventually I will be using tighter springs and doing more challenging exercises - for example, picking up a ball and placing it on top of a cone instead of dropping it. My hardest exercise now is picking up the ball and trying to touch it to my chin, then lowering it and dropping it into the container; right now, I get it nowhere near my chin, but in the general direction of up. Given enough repetitions, I will be able to do it eventually.

First thing this morning, I tried an exercise my OT gave me last week – opening and closing my fingers while my unaffected hand holds my affected one – no, not helping, just giving me a base as a target for my open fingers.

This morning, I was able to nearly straighten my first two fingers. “Nearly,” in this case, means, not all the way to 180 degrees from my palm, but more than 90 – maybe about 135.

Later today, it will go even better.

some good news at MGH

2011-08-25T10:55:00.000-07:00

Today my MGH OT evaluated my hand/arm again, measured my abilities and was happy! Now my next appointment with her is in 4 weeks, which makes me incredibly pleased with myself. And I was glad to cancel the three appointments I had scheduled between now and Sept. 22.

When I woke up this morning, I was down and it took Tom and Patricia's encouraging words to stop my crying. Of course, their encouragement made me cry more.

Part of my sadness was that I was convinced I had not progressed enough in the past month to be able to do well at the evaluation - but I was wrong. My elbow bend (like a curl) improved from an angle of 65 degrees to 90.

Also at the GLO train station, a guy was hanging out on a bench trying to collect enough money for a trip to Boston, so I gave it to him.

Just as I provide opportunities for others to do a good deed for the day, so can I do my part to encourage others to help strangers. Maybe compassion can go viral.

“What do You Want from Life?”

2011-08-24T10:07:00.000-07:00

This song by the Tubes was the first to play on my iPod while on my rowing machine this morning. It got me thinking about what I want from life (because it’s all about me now, isn’t it?). I don’t actually like the song except for the fact that it’s amusing at times. Who could like a song with that title and includes a list of material possessions (in alphabetical order) and ends with the line “or a baby’s arm holding an apple”?

What do I Want from Life?

What I want starts with what I need…First, there are the basics: shelter, food, water and air to breathe. I’ve got those in a better-than-perfect quantity and quality.

Second order needs – yes, “needs,” in that I would die without them: people I love and people to love me. Again, I’m all set with those. To my beloveds (and if you think you might be, you probably are): Thank you all.

Then there are the things I truly want, but don’t “need.” These include:

1. to embrace the Buddhist tenet that I want happiness for all individuals, and be happy in a way that does not depend on circumstances.
2. to have work that is fulfilling.
3. to have the ability to row.
4. to recover all of my pre-stroke faculties. There, I said it! It’s something I desperately want and am working toward, but don’t need. In specific, what I want is: to be able to use my left hand, arm and hamstring; walk without too much of a limp; climb a ladder; walk in my garden, on lawn and on the beach without a brace; and drive without (deservedly) being honked at.

the kindness of strangers

2011-08-21T07:07:00.000-07:00

I have touched on this topic before, but thought I'd go to it again. Since I had the stroke, I have been touched by the kindness of strangers. Everywhere I go, I encounter people who help me in small, thoughtful ways: opening doors into buildings, closing the door behind me after I get in a car, and offering to help me down stairs or across difficult terrain. One picked me up to a stand when I was trying to climb up from sitting on a stone wall at the beach, when it was clear I needed help.

With the exception of two guys in pick-up trucks who rudely exhibited their impatience from behind me as I timidly tried to turn left onto a busy road, everyone else has been patient, kind, tolerant and compassionate. It makes me very proud of all of us, including me.

My current status with my OT at MGH is that she will evaluate my abilities this Thursday, then perhaps will see me just once a month after that. I will be very happy to schlep into Boston just once a month for a check-in and to possibly get harder homework.

On my way home from MGH this past week, I was approaching the information booth to find out early what track my train would be on - I have to find out early to get a head start on everyone else - and the man who works in the booth (who apparently works there on Thursdays, the day I pass through) smiled broadly from behind the glass and held up two fingers. "Rockport, right?" he called and when I nodded, he waved his fingers and said," Track 2."Thank you," I called back and headed to track 2. What a sweetheart.

That same day, as I paid for my ticket, the man buying a ticket next to me was upset and said,"I can't believe I don't have enough - I have to be on that train." I asked him how much he was short and he said,"Twenty cents." I smiled and said, "I can give you that; just give me a minute, please," as I rooted through my fanny pack for a quarter.

He wouldn't stop thanking me and telling me how wonderful and kind I was. To put a stop to it, I said," It's nothing - anyone would have done it." "No, no, no," he insisted, "lots of people wouldn't help like that." We bickered like that for a short time, then I said,"You're welcome," and walked away.

Ye, most people, including me, are kind, compassionate and willing to help those in need. Of course, I've had plenty of kind strangers to emulate.

2011-08-17T09:09:00.001-07:00

My readers - if there are any left - are probably getting tired of this line of thought - but, tough: I'm tired of it too.

During the night last night, whenever I woke up (that's dozens of times), I tried straightening my fingers. And TWICE I felt with my right hand that my first two fingers of my left were straight. That's it - twice. Of course, I tried many more times, but two was it.

After two years of other approaches/exercises, I have to credit the Saebo with this one.

Wish me further luck.

Letting go

2011-08-15T09:52:00.000-07:00

Let me apologize ... this is a long one...

Laura Berman sings a poignant song “Letting Go.” It starts:

I think it’s time for the letting go
it’s time for the letting go
I think it’s time for the letting go

As I recover, I have been accumulating challenges that require letting go. Some of the things I’ve lost were unceremoniously yanked away from me, with me trying to continue my hold and wrestle them back; others I’ve let go of willingly, gladly jettisoning.

For an example of the former: before the stroke struck, I enjoyed every detail of the job I had, but in the time since then I’ve had to let go of the job piece by piece, reluctantly giving away responsibility after responsibility, until the job was pared down to one stick of a julienne carrot instead of the whole glorious root; not even the core was left. While the process of letting go as my fingers were pried off has been heart-breaking, the result is the best possible solution: I get to write and edit, making a valuable contribution to the newspaper I have loved for a dozen years.

I must have been crazy
To stand my ground
A queen with no fortune
Defending her crown
I must have been out of my mind
You’d think I’d have learned
Every road to redemption crossed a bridge that I burned
- Laura Berman

Examples of the latter – those I have enjoyed jettisoning - are “friends” I’ve lost; obviously, the people who abandoned me in the days and weeks after the stroke were never friends to begin with, just acquaintances putting on a show of friendship until I required something more from them. In some cases, it may be that I served as a reminder of what could happen to them – that is, I was an example of their nightmare or the threat of their own aging; for others, I think there was already so much care-giving in their lives that they could not take on the additional burden of me. They may have a different interpretation of why they broke off relations – some imagined slight on my part, an inability to transform our old relationship to our new. I think, though, that they were not true losses and I’m the one who ended our relationship. Call it a grudge, but one day when one of the lost friends called me, I panicked and said exactly what was in my heart, “I have nothing to say to you.” Her response was to ask me for a trivial favor; I answered, “Of course,” and meant it.

Forgiveness was all I have left
To heal these wounds and clean up the mess
Salvation, it came with no price
The moment I knew
I didn’t have to be right
Anymore, anymore
The moment I knew I didn’t have to be right anymore, anymore
- Laura Berman

Also, I am happy to no longer have the responsibility of grocery-shopping by myself –
I have long despised planning meals and making decisions about what I’ll fix next Wednesday, etc. And then I would be side-tracked by special deals on items that go into dishes I had not planned, but enjoy, so that I would be amending the week’s menu as I pushed my cart through the store, only to return home an item or two short.

And then there’s washing the windows. I used to wrestle the double-hung windows into the tilted-in, washing position to reach the outside of those on the second and third floors. Because there was such a difference between the washed and unwashed windows here and it's so pleasant to look out the windows and into our yard, I did the task frequently. Looking through a dirty window and thinking, “I really should wash that,” is bad Feng Shui, which I seek to avoid. My connections to objects should be positive, not negative. I tend to throw/give away gifts from people I don’t love because I’d rather not be reminded of the person every time I see the object.

I find the hardest part of using the Saebo is letting go of the ball. Positioning my hand, grasping the ball and moving my hand to the correct place are all easy, and then I’m supposed to let go so that the ball falls into a bin, which requires all my concentration to make my hand relax enough for the ball to drop.

More from Laura:

For the sake of the rest of my life,
I’m willing to surrender it all
The resentment and fears,
The anger and tears
God, give me the strength to let it all go.

unreproducible thumb movement

2011-08-11T04:48:00.000-07:00

At 6 this morning, while sitting in bed drinking coffee, I swear I saw my thumb straighten! I then flexed it toward my palm and tried again, but could not reproduce the motion since then - and, yes, I HAVE been trying. Long ago, one of my OTs told me, after I attempted raising my shoulder 10 times, that my affected muscles tend to tire after three repetitions of a movement, and I suspect that the first time is the most tiring. I plan to spend the day periodically trying to straighten my thumb again and having Patricia witness it straight. She'll believe me that my thumb itself did it because she knows that I am so honest that I don't cheat even using the Saebo, when it's so tempting to count a ball that bounces off the rim of the container I'm dropping it into; I fetch the ball and do a do-over instead.

How exciting to think of getting back my opposable thumb! I'm hoping that by the end of the day I'll be able to hitch-hike.

And what a good role model it is for its recalcitrant buddies!

drumming

2011-08-09T08:06:00.000-07:00

Over the weekend Tom and I went to a party at which our next-door neighbor's college band played; the neighbor and his wife threw the party at a decommissioned fire station that they bought from the city years ago to house their antique-car collection.

Our neighbor is a tad older than we are, so his college music was the music from our teenage years - a little Doors, the Mamas and the Papas, etc.

As we entered through the huge double doors, a man wearing a Hawaiian-style shirt made of fabric covered with various drums and drum sets came up to me and introduced himself - he was the drummer in the band and said he'd had a stroke 12 years ago. Apparently he could tell I'd had one.

We talked about having a stroke and the important and silly things it steals from you. Important: our jobs (he was the director of marketing for a large corporation) and our hobbies ( drumming, rowing). Insignificant: the ability to wear cute shoes (mine) and multitasking (his).

The most important thing, he said, is to keep believing we can improve and trying our best to. He told me that even 12 years after he is improving - especially his drumming.

I spent the party carrying on very loud conversations and watching women in adorable shoes dance. I enjoyed the band very much and, of course, admired the drumming in particular.

To regain the ability to drum well amazes me almost as much as the guitarist in " Life. Support. Music." Imagine my affected hand being able to form chords? Not possible - it was too hard for me before the stroke. Millie's got a drum set in our music room upstairs, so I could give that a try once I can hold a stick in my hand.

I tried straightening my fingers during my waking hours in bed last night - I would try and try and then look to see if they had moved. ONCE I thought I saw my first two fingers open the tiniest bit. Maybe the Saebo is starting to work!

I

re-entry

2011-08-08T15:36:00.000-07:00

Commenting on another stroke survivor's blog entry just now reminded me of my unrealistic expectations about my job just after I had the stroke. As soon as I got home, I put together a document I called, "Barb's Re-entry Plan." It contained a timetable of sorts, a series of descriptions of how and how rapidly I would progress back to my former abilities - what a ridiculous thought: I had no experience recovering from anything before in my life - a broken heart here and there and grief from losing a loved one, but not much else. My re-entry plan was pure speculation based on my daydreaming about returning to my former life after a brief interruption. Ha!

Fortunately, my boss had the sense to not consider my proposal as a real possibility; instead, he kept telling me that we didn't know - and had no way of knowing - what would happen.

My logic was that if stroke survivors regained most of what they would recover in the first 6 months following the stroke, I would be back to my regular self at 6 months out. I knew that I would be one of those who completely recovered because if anyone could do it, I could; that meant I would be back completely in 6 months, and that meant back at my former job as general manager of a weekly community newspaper. Now, 2 YEARS later, I can manage to adequately perform two miniscule subsets (copy editing and writing human interest stories) of my former job; I cannot drive to the office (still no driver's license, just a permit) nor manage dates very well - that calendar in my head is still challenging. At times, I don't even play well with others - I think because I have so much to prove: I was a classic A player before and I've been downgraded to C or less, which embarrasses me completely. My confidence is shot and my mistakes appall me. At times, I feel just like me inside but I have such grave physical, mental and emotional limitations now that I sometimes don't recognize myself.

Two years of soul-searching through a near-stranger is an arduous journey.

Semantics

2011-08-07T08:43:00.000-07:00

"That's just semantics." - How many times in my life have I heard that? Yes, I often react to what people say based on the words they use, not necessarily what I can guess they mean. It has happened to me in many jobs I've had, along with in my personal life. Why is the onus on me to guess, rather than for the other to speak clearly, definitively and precisely?

As a writer (starting with medical software operator's manuals) and an editor, word selection is critical to clarity. Yes, semantics matter - there is no "just" about it. As a stroke survivor, it is important for me - obviously,others can use the words they choose, but they should understand the implications of the words they choose - to use/avoid particular words and phrases:

I am a "stroke survivor," not "stroke victim." It stresses the fact that I lived through a medical crisis that, more often than not, kills people; it focuses on the positive result of what happened to me, not the negative, as "victim" does. "Stroke patient" is acceptable to me too, although I do not currently view myself as a patient.

The stroke I had is "the stroke I had," not "my" stroke. I refuse to lay claim to the event that was catastrophic in my life; I reject it.
To me, "my" implies something that I hold close.

Adjectives and adverbs are often irrelevant. What do "cold" and "snowy" add to the following sentence? "After a cold, snowy winter, New Englanders were glad to attend the Red Sox Opening Day game, a sure sign of spring."Or "angrily" in this one? "Get the hell out of here," she said angrily. Choose adjectives and adverbs carefully, rather than padding a sentence, even if you think it "sounds better." Actually, if the phrase does sound better, it's probably because it's trite and too-often used.

I see that I strayed from my defense of arguing semantics and segued to another favorite topic - writing well, from this editor's point of view. Go ahead and disagree with anything I said here - word choice is one thing that makes writers differentiate themselves.

uneven surfaces

2011-08-05T13:09:00.000-07:00

Last night, Tom and I went out on a friend/neighbor's motorboat for a tour around Gloucester Harbor. The boat is moored at the Eastern Point Yacht Club, so our friend dropped us off near the front door and instructed us to walk around the left side of the building and said she'd catch up with us.

To go around the clubhouse, I had to first travel over loose gravel, then a long stretch of lawn that was both lumpy and included a downhill portion, and, lastly, a granite outcropping to uneven - both the surface and the risers - rock steps. At the end of the steps was a gangway tilted up, with plywood over the hump and then a downhill metal section with ribs every foot or so. It was a floating gangway of course, so the end of it moved relative to the floating dock, which meant I had to guess where the dock would be when my foot landed. All-in-all, it was a challenge - across the three toughest terrains I could not navigate in May during our trip to Sweden, plus the moving target of the dock. Sitting down on the gunwale and swinging my legs in was a breeze compared to the rest. During the walk across the lawn, both our friend and Tom said that they had wondered whether I should have worn my brace. I, of course, would have refused, but it ended up a moot point anyway.

After the trip, when we went up to the clubhouse for dessert and drinks, I had no trouble navigating any of the surfaces and not even any concerns other than the possibility of slipping on the metal gangway and getting pitched head-first into the water. I asked Tom to hover close, and he did.

Patience

2011-08-01T10:36:00.000-07:00

I used to belong to a Bible study group and the leader there warned us to never pray for patience - because the only way to become patient is to wait a LONG time to get something you really want. You know what? I never did pray for patience, but I suspect someone prayed for it for me. So here I am - an amazingly patient person.

Tom said yesterday that, for an impatient person, I'm very patient in my recovery, specifically in regard to the Saebo. He also told me that, if progress were directly correlated to effort expended, that I would have fully recovered a long, long time ago. Both of those statements make me grateful for Tom all over again.

Tom is correct - I used to be an impatient person - BEFORE the stroke. I used to be aggressive about setting goals and was not particularly gracious to those who stood in my way. I sincerely want it to be one characteristic I do not recover; I remember when it first struck me that I was learning patience: Perhaps I have already written about this - but, if so, please be patient while I repeat myself. I was in Spaulding Rehab with no known departure date (Yes, it reminded me of the "Hotel California" song lyrics - you can check in, but you can never check out).

It was chaffing my soul to stay in when I was so impatient to be home; every day I asked my case manager when I could be released. Eventually, her answer changed from," We'll see," to "Before Christmas," then to, "December 14." I ended up leaving Dec. 12. Toward the end of my stay, I would text my son and my sister Beth every morning with the number of days left before my release - a countdown of sorts.

During the phase between "we'll see" and "before Christmas," I suffered every day whenever I thought about home/going home for good. Until one night while in my bed at Spaulding obsessing about home, it dawned on me that I would be going home eventually and that it would happen when it happened, when outsiders deemed me ready to go home. It was an enormous relief to realize such a simple and obvious conclusion. Realizing that it would happen when it happened was freeing and cathartic - it recognized that future decisions by other people are something I cannot control and my suffering was not contributing to me going home any sooner. Since then, though, it's been a tough attitude to sustain. A lot of my future is in my own hands, based on my endurance and my ability to look out for myself. But a lot of my future is out of my hands and I have to let that part go - I cannot will something to happen, nor will my impatience regarding recovery bring it about any sooner: I do my part and it will happen when it happens.

That's patience in a nutshell: accepting that whatever-it-is we long for will happen when it happens and that being short-tempered, antsy and the other characteristics of impatience (like kicking the table leg) will not bring about the whatever any sooner. It is comforting if we know that the whatever WILL happen eventually, but we just don't know the timing.

In regard to rowing for real in the gig - on Saturday, I went on a second row of the season and it was much like the first, with a slightly improved ability to get in and get out. Tom once again held my splint on the oar and it rarely came off the oar. It was a hot, calm day and we were short two rowers, which gave us what I called two-and-a-half rowers - counting Tom and me together as a half. That made it a lot more work for the other rowers - and for me. I actually worked up a sweat separate from the heat of the day and remembered how much I loved the hard work of rowing - in my life, rowing had replaced running every day and it had the advantages of being both a social event and taking me out on Gloucester Harbor. And I'm patiently waiting to be able to do it for real ( i.e., without depending on Tom or another rower). I will do my part improving my grip, my strength and my ability to get around and I will wait patiently for it all to come together when it's time to happen.

So, whatever you do, PLEASE, PLEASE don't pray for me to have patience - I have quite enough, thank you. And watch out praying for it for yourself. The answer might be a hard, hard lesson.

first row of the season

2011-07-25T08:39:00.000-07:00

After waiting patiently to figure out when, based on the boat's and other rowers' schedules, the day of my first row this season was yesterday.

Although it was reasonably successful and fun, it was not the emotional trip it was last year.

My new splint had a couple of the same problems my old splint did: Tom had to place his hand over mine and the splint (which means I cannot go without him) because it kept popping off the oar and a spot on the splint wore into my wrist (which just means I need a little more padding there).

Getting into and out of the boat was easier than last summer - like last year, I wore my AFO to minimize the risk while climbing in and out. To get in, I crouched down on my haunches to sit on the gunwale, which was at the same height as the floating dock, then pivoted so that my legs went in. To get out, I again sat on the gunwale/dock and swung my legs to the dock. I went from sitting on the dock to on my hand (right) and knees on the dock and then took another rower's hand to straighten my legs and stand.

It was the first post-stroke time I had gotten into and out of the gig without my friend Bart's assistance. Another rower noticed that too, saying," Yes, I looked around for Bart and, when I saw he wasn't here, said, "Shit.'" So she stepped in and helped as Bart has always done - supervising the process and providing physical and emotional support when needed. Plus, she was capable of catching me at any point if I'd fallen.

The row was on a beautiful, sunny and calm day, and the cox kept us rowing for most of the scheduled hour, with just one break, although he checked with me frequently to see how I was doing. He and his wife were very sweet to be on my row, given that they had rowed in the 22-mile Blackburn Challenge - a circumnavigation of Cape Ann - the day before, and the boat had set a record time for itself, as had our club's other boat. The race generally takes something under 4 hours to complete. 4 hours is a heck of a long time to row. I would like to do it myself someday - emphasis on the "someday." As many runners say after completing a marathon, for me, the sense of accomplishment would not be about the time it takes, but about finishing the race.

In a way, it's an unrealistic goal, but we all set those. For example, Dean (another hard-working stroke survivor, 4 years post-stroke) recently tried to ride a normal bicycle - and succeeded. Accomplishments like that are nothing short of miraculous to those of us still struggling to pare carrots one-handed and to walk without an AFO and cane. To say nothing of those who cannot yet eat except through a feeding tube. What is (or seems) impossible now gets closer and closer to accomplishing each day.

another blog entry for women only

2011-07-23T05:22:00.000-07:00

women: As stroke survivors or the caregiver for a stroke survivor, you know how discouraging your situation can be...and how important a good laugh is. for you, I recommend Tina Fey's book "Bossypants."
men: If you're gay, you'll love it too. Now, you don't have to commit to being gay to read it... You can just lie and come out to a few women friends, who will love you even more, and then have one of them buy two copies...one for you and one for her, so that she loves you even even more.

my take of the book.. You will enjoy it. I could hardly finish reading it because my tears of laughter made the pages blurry. It starts being exceptional during the chapter about her honeymoon cruise. the 12 beauty secrets chapter rang true. save the book for those times you are really down and not feeling too envious of those who get to continue on with their lives without being slammed backward to no-walking, no-talking days.

You will feel better. and you'll learn a little about improv.

avocation and vocation

2011-07-17T04:49:00.000-07:00

I spent yesterday gardening - I'll admit mostly weeding - in glorious weather. Because I could. It was the first full day of gardening post-stroke. I never did spend a day gardening last summer because it was too difficult to stay close enough to the ground. Last summer's gardening consisted of either (1) bending at the waist and reaching with my unaffected hand, which tired out my unaffected leg faster than I thought it would (I admire my unaffected leg because it is incredibly strong, and patient too) or (2) sitting on a small rolling stool my husband bought me. The stool's limitation is that, even with its wheels, it's hard to move it around the garden; I cannot roll it while sitting on it because my AFO digs into the back of my bent knee and I end up more inclined to push myself off the stool rather than moving the stool. So I end up standing and pulling the cart to a new spot and sitting again. That's a LOT of deep-knee bends, which are easier for me this summer than last.

Are my current weeds the result of an ignored garden last summer? I think so. So this year, it is even more important to keep up. When we bought this house 6 years ago, it had spent the past maybe 40 years getting to its overgrown state, and we spent years carving out garden from the jungle. We had made significant progress; and it was quite lovely the summer before I had the stroke.

Not anymore.

The summer after the stroke, some of my siblings came one weekend and weeded, then spread mulch - 7 yards - over the newly weeded beds and paths, so the garden was acceptable until crabgrass and a few other nasties sprouted in mid-summer. The good news re using the "ignore" gardening method is that I did not deadhead, and plants like dianthus went to seed and serendipitously spread to perfect places among the rocks, including down below an outcropping above a path.

Yesterday, I carried/tossed a cushion (the atrophied gluteus muscles on my affected side have not yet bulked up, which leaves me with little padding on my left cheek and discourages rock-sitting) around the garden so that I could sit on it on rocks and weed around that rock. Again, lots of deep-knee bends, but I did them just fine, using my cane to keep myself from pitching forward as I stood. In a particularly wide patch of crabgrass, I set up a low beach chair - again, my carrying method was heaving the closed chair, then following it to its landing place and repeating the process. I "carried" the tools, including a couple of sharp ones by shutting them inside the folded chair before tossing the chair; I am afraid of tripping and falling onto one tool in particular - I think it's a Japanese hand hoe: a long-handled one with a bent blade that is blunt, but has a pointed end at a right angle to the handle. Falling on it, my weight would negate the bluntness of the blade, I'm sure. So I toss it instead of carrying.

Tossing is often my preferred "carrying" method. I drop soft objects - dirty laundry, dog toys and jackets - down the center well of the front staircase, where they land on the first landing (perfect name, right?)

My very first OT (inpatient rehab) called my problem-solving approach "inventive," something I am proud of - I particularly enjoy when an OT tells me that I "should have been" an OT - I think it's high praise from an OT. Part of me DOES want to be an OT or PT after this ordeal is over; there was a nurse in rehab who'd had a stroke 6 years before, which made me want to be a nurse in a rehab facility. When that happens, I have to remind myself that I AM a writer - that's my true identity, pre-stroke and post-stroke. This stroke will not derail me from that - it will contribute to it.

Saebo progress

2011-07-12T09:44:00.000-07:00

I forgot to report in last week after my most recent Saebo OT appointment at MGH. As it turned out, I was doing well enough that: (1) my OT dropped my visits down to one per week. This makes me very happy because schlepping to/from Boston in this heat is unpleasant. Even though it's punctuated by blasts of AC on the train, in the cab and inside MGH.

And (2) My OT gave me a new exercise that makes me bend my elbow: Instead of picking up a ball and dropping it to a wastebasket on the floor to my left, I pick up a ball and put it in a dishpan on the tabletop to my right. After repeating 5 times, I do it again, moving the balls to a dishpan on my left. Dropping the ball into the dishpan is still the hardest part - even harder than bending my elbow to get the ball over the side of the dishpan. Going across my body and dropping to the right is harder than dropping to the left, I think because I'm gripping the ball so hard as I lift the ball up over the side of the dishpan.

Today, at the end of the session, as I am supposed to do at the end of each, I tried to pick up a ball not wearing the Saebo. After failing that today, Patricia held my hand open and placed it palm-down on the ball; I grabbed the ball then and lifted it, although it immediately flew out of my hand as I inadvertently swung my arm and it rolled across the floor.

I'm willing to accept any progress, though, so that's today's.

arm improvement

2011-07-11T11:52:00.000-07:00

I don't know if I should give credit to the Saebo, but when I woke up two days ago, during my usual morning inventory - to see what works and what doesn't - I lifted my left arm, bent at the elbow with my forearm across my abdomen, palm-down, about 6 inches over my body. I did it 3 times to convince myself that I could, and then 2 more about 5 minutes later. How exciting! But this morning, my attempt was pathetic, with my wrist bent and my hand flopped down and just a little raising of my elbow. But even that's more than I could do last week.

I do my inventory every morning because of a stroke survivor from Bermuda I met. His wife told me that he had regained the use of his arm suddenly - that one morning when he got up, he could just move it. Before that, she said, all he could do was give people the finger. My OT told me that that isn't typical - that it's generally a gradual return.

It reminds me of two different concepts of evolution: (1) a gradual change from one characteristic to another and (2) punctuated equilibrium. (1) happens when a species gets larger because the large ones have more offspring and the offspring themselves have offspring even larger than they. (2) happens when a mutation leads to a jump along the path of change - a plateau, if you will - like when a cluster of cells first differentiated into a sensor of light and dark; and another jump much later turned the cluster into an eye.

Either way, there's the same result - an "improvement," as defined by fertility. What I am seeking is an improvement defined as function. And I'll take it either way: gradually or as a jump. There's enough optimism in me to suspect that it could happen to me as a jump. Hence my morning inventory.

Of course, so far it has led to disappointment every morning, but that won't forever.

blueberry picking

2011-07-06T17:17:00.000-07:00

Stroke survivors tend to turn every activity into therapy. Even in bed during the night, when I wake up, which is frequently, I use my right hand to pull my left hand up over my head so that I stretch my arm to increase its range of motion.

Today, my therapy was picking blueberries. Patricia, Turbo and I went out this morning into the 15-acre preserved meadow next door. It's half-full of low-bush blueberry plants punctuated by scattered high-bush. We have been checking the bb ripeness status nearly every day for the past week and today was our first picking day. Friday will be our second.

As therapy, I sat in a low beach chair (which strengthened my quads with every up and down) and did a lot of torso twists reaching out toward the berries, mostly low-bush, first one side, then the other. Even walking out through the field and between bushes was a challenge - I wore my ginormous AFO because I still haven't gotten to the point of being able to walk braceless across uneven terrain - with my affected foot frequently getting caught on the raspberry and rose runners. The field is a tangled prickly mess for the first 6 inches above the ground. Plus it was probably 85 degrees out there. It's all just more of a therapy challenge - like I needed that!

The bb crisp tonight made it all worth it.

Off to MGH tomorrow for more Saebo work, then bb picking again Friday.

success, finally

2011-07-04T08:07:00.000-07:00

Success is an impressive motivator.

After three weeks of frustrating sessions using the Saebo, I have been progressing nicely for the past couple of weeks. One thing I've noticed is that morning sessions result in more balls moved than afternoon sessions. This morning, for example, I moved 100 balls in 46 minutes. Once I reached 96 and had 4 minutes left until the end of the session, I pushed myself to do get to 100 in that time - It ended up taking an extra minute because I dropped ball #99 4 times before getting it right.

I think we have finalized the factors that contribute to my success:

1. My hand and arm are less spastic if I use the rowing machine beforehand - today it was 2 miles rowed before trying the Saebo. This allows us to put the Saebo on in the correct position.

2. My hips and shoulders must be parallel to the table with my feet pointed straight ahead.

3. The ball should be in front of my left hip.

4. The seam of the ball should be placed so that one half of the ball is in position for my thumb and the other for my fingers. The seam should also be at a 45 degree angle to the edge of the table so that I don't have to pronate my arm with the unit on it; I am getting slightly better, though, at pronating my arm, so this might change soon.

It took weeks to come up with this formula, but once we did, it made a remarkable difference - a jump from about 20 to 60 per session - and now to 100.

This afternoon, I will have to be content with fewer than 100, while looking forward to more tomorrow morning.

Success with the gadget has made me look forward to the sessions, rather than dreading them, as I did in the beginning.

lows and highs

2011-06-28T09:11:00.000-07:00

It's always darkest before the dawn, right? We need the lows to appreciate the highs, right? In short: After the adjustments my OT made yesterday, I was able this morning, using the Saebo, to move 46 balls in 48 minutes - back to success!!!

I'm a little nervous, though, about this afternoon's session.

Hey, Universe: I really don't need any more disappointments. Or patience. I'm all set with those. It's time for joy and positive feedback, please.

Saebo changes

2011-06-27T17:36:00.000-07:00

It was a much better session at OT today - significant changes to the device, including the addition of a thumb strap that should keep my thumb from behaving so sideways-ish. Plus, I got bumped up to a harder spring - before that, it was much easier for me to grip than to release - a harder spring will give me more to fight to strengthen my grip and more to pull back on my fingers to straighten them. Perfect.

Tomorrow will be the true test of how today's adjustments work.

What is my goal, anyway?

2011-06-25T14:23:00.000-07:00

Since my very successful day using the Saebo, I have had a run of failures - including one session with my OT, who kept adjusting and then seeing how I did, repeated for 45 minutes until I was crying.
The three sessions I've done at home had the same results (that is, 0 balls moved),without the adjustments except to slide the fingertip cups farther up my fingers, an adjustment I'm allowed to do.

On the other hand (sorry about the word choice), the function of my left hand has improved: Today at the Y, there were several rewarding events...
On the pec fly machine, I gripped the handle for all 3 sets of 12 reps I do.

We added 2 new exercises on the arm cable machine and I could grip the handle (a new kind) much better with my left hand although my right was always there ready to help out.

I completed the 100 miles of rowing and picked up my water bottle prize, which my left hand carried into the house when we came home and I walked to the kitchen door.

I don't know if I can credit the Saebo for the functional improvement in my hand, but I'm willing to continue the very frustrating sessions as long as I see my hand improving.

I have to remember my goal: it's not to be able to pick up a ball WITH the Saebo - it's to pick up a ball (or whatever) WITHOUT the Saebo. I had to keep reminding myself of that today when I had yet another 45 minutes without successfully moving a single ball.

I go to my OT again Monday so that she can continue making adjustments. I'm hoping I leave there that day actually able to reliably use the device. It would make the twice daily sessions SO much more pleasant. AND I'd have a number to monitor, which I absolutely love.

28 balls

2011-06-20T12:46:00.000-07:00

Today, my dear friend Megan took me to OT at MGH, waited through my appointment, then brought me home. During therapy, my OT adjusted the Saebo more and I moved 28 balls in 40 minutes. Now I have it home with the instruction of using it for two 45-minute sessions per day and keeping track of how many buckets of balls I can move during each session. I'm scheduled to go to OT at MGH twice a week through July and I'm thrilled to think I'll make measurable progress in that time. At the end of each session, after taking off the device, I'm supposed to try picking up a ping-pong-ball-size ball to see if I can.

The SaeboReach came home

2011-06-17T06:15:00.000-07:00

Yesterday I took the commuter train into North Station, hobbled slowly the length of the train to get to the station - and as I walked, three people using canes passed me (none had likely had a stroke, though, given the way they walked and held their arms), went out to Causeway Street and found a cab. I was a little distressed at the sight of two News 7 vans parked on the street, with technicians setting up equipment. I thought that maybe the Bruins Stanley Cup parade was about to start and I would get pushed around by the crowd. (It turns out the parade is Saturday). The cab driver was very sweet and helpful, opening the door for me when I got in and coming around to help me out when we arrived at MGH.

My appointment went well considering that my goal was to be able to take the SaeboReach home. During the session, the adjustments completed, I was actually able to grasp, lift, move and drop a ball on the table, just once; that led my OT to say that I could take the device home and practice putting it on and taking it off. I did that this morning, with a lot of help from Patricia putting it on, but then could not grasp the ball even once.

I am determined, though, for this to work. Wish me luck and other good things.

Saebo status

2011-06-14T05:32:00.000-07:00

Yesterday, the OT got as far as adjusting the hand part of the Saebo Reach; there is still an above-the-elbow piece too. Until that is adjusted and the whole gadget works for me, I won't be allowed to take it home and start exercising with it. I go again tomorrow and am hoping that's the day it works! Yesterday, I could not grasp a ball properly, so that part probably needs further adjustments. We'll see. If I am supposed to learn patience through this ordeal, I'm FINISHED!! Let's get the party started!

It's in!!!

2011-06-09T12:33:00.000-07:00

My SaeboReach is at MGH and I've got 4 OT appointments set up over the next 2 weeks to learn how to put it on, have it adjusted and learn the exercises I'm supposed to do twice a day. I can hardly wait!!

one year of progress

2011-06-08T08:34:00.000-07:00

On June 10, 2010, I had my eye screening for the RMV in order to get my driver's license. It's amazing to me that that requirement was so easy to fulfill and I did it a whole year ago.

Also a year ago - I go back in my blog periodically to check my progress since a year before - I walked at home for the first time without my AFO. I was delighted at the time because it meant I could mosey to the bathroom during the night without having to assemble all the paraphernalia on my foot, which always woke up Tom so that he could get out of bed to help. It was an exciting step (so to speak) at the time and here I am now going without it 24/7 except to garden and scramble on the rocks in our yard. That's progress in a year! Next step is to start increasing the distance I can walk on uneven surfaces. I think I will define a lap around our yard and then increase the number of laps each day.

hurray, hurray!!

2011-06-07T10:43:00.000-07:00

My Spaulding OT contacted me to tell me that my Saebo unit is on its way to my MGH OT. Now I need to schedule my OT sessions at MGH and I am, not surprisingly, incredibly excited about it. I have very high hopes for the unit and can't wait to start using it. I promise I will enjoy every minute of those twice-daily 45-minute sessions picking up and dropping balls, even if they are the most boring time I ever spent. So far, the most boring thing I've done in my life was lying in bed at Spaulding-Boston, counting to 60 repeatedly to see if I could time it perfectly to be a minute. I let myself look at the clock only when I reached 60. I did that one night that I called Tom at 3 a.m. and started the conversation by saying,"Watcha doing?" When he said, "Sleeping," I was amazed that he wasn't at work. He told me it was 3 a.m. and when I asked how I was supposed to tell the difference between 3 in the morning and 3 in the afternoon, he said,"Look out the window and see if it's dark," which is exactly what a nurse kept telling me when I kept calling her in to tell her that I needed something not appropriate for nighttime - I can't remember what the issue was. At the time, though, I was baffled by the concept that whether it was dark or light would indicate whether the time displayed on the clock was a.m. or p.m. And I tried my best to remember that concept so that I would stop calling people in the middle of the night, which I knew was an unwelcome thing. To continue the story, I called Tom at 3 a.m. and then, instead of going to sleep, I started the count-to-60 game, biding my time until late enough in the morning that I could call someone. I played it again one evening waiting for Tom to come visit. Let me tell you - I know boring. Picking up and dropping balls will be easy to tolerate: add some loud music, some chanting, an audiobook or two.

recovering

2011-06-03T14:00:00.000-07:00

What does "recovering from a stroke" mean? Do I have to fully return to my pre-stroke capabilities? Do I have to be able to use my left arm/hand to help me? Do I have to be able to run? Do I have to stop being so frustrated with my deficits? Must I be able to lie comfortably on my left side, the way I used to?

If I'm still limping, along with retaining other deficits two years from now, but have adapted to my life that way, am I recovered?

Or is recovered when I stop trying to move forward and just accept that how I am is how I will be?

Part of the difficulty in recovering is not knowing the endpoint. We are traveling on this exceptionally hard journey without knowing where we're going. We like to imagine where we're going - daydream about it, work even harder for our endpoint to be where we WANT it to be rather than what it's likely to be. We have abruptly lost control over half of our body, yet believe that we can control where we end up just through sheer pigheadedness, desire and hard work. We are an amazingly optimistic bunch. Encouraging, too - I have not once communicated with a stroke survivor who has not: patted me on the back, told me that I'm an inspiration or help to him/her, or told me a story about his/her own recovery that sheds light on my own struggle.

My Saebo unit should arrive here next week; the thought makes me dream of using my hand/arm again. For what? To carry things, to hug my family and friends, to help me with Turbo (brushing, petting and walking), to fold laundry, to open bags so that my right hand can put objects in, to help my other hand make dinner or plant things in the garden, to hold paper while I write on it, to stick my arm into clothing sleeves, to tread water, wringing out a mop, hanging clothes on the line... and the list is probably longer than that, but why are so many related to housework? I think it's because I love the prospect of doing every last thing I've been deprived of, appreciating the chance of doing even housework. Maybe that's the definition of recovery: being able to clean my house. :)

I failed the driving competency test

2011-06-02T12:58:00.000-07:00

It was for a specific reason: I did not have adaptive equipment installed in my car to compensate for my one-handed driving. I need a knob on the steering wheel and a device that allows me to control the blinkers without taking my hand from the wheel. Now, if that's a requirement, why did every Mass. RMV employee (including in the Medical Division), my driving instructor, and all my OTs and PTs I talked to not know that? All of them said I "could" get the equipment if I wanted to, not that it was required. How could none of them know? The closest was the suggestion that I have a driving evaluation by a post-stroke driving specialist to get his/her recommendations - it costs $300, which I didn't want to spend on someone who could say exactly what everyone else was saying. In fact, my driving instructor told me that the RMV "has to accommodate my disability," implying that if I use my right hand to do what my left hand is incapable of, I could still pass. My tester today, though,
said that he really could not pass me because I MUST have the adaptive equipment. That's pretty "accommodating" of them, no?

And my driving instructor also told me that the tester is not allowed to ask me anything about my disability. But he did - he asked whether not being able to use my left arm was permanent. Everything in me wanted to say, "Not on your life," but instead, I said,"yes." I don't think a different answer would have made him pass me, so what does it matter?

The good news, though, was that the tester told me that I was a very good, very safe driver and that if I'd had the adaptive equipment, I would have passed. He said the parallel parking was a little "iffy" because the car was not lined up straight at the end, but that was the only thing wrong. (I know, though, that I turned the wheels the wrong direction when he asked me to pretend I was parking on the side of a road on a hill, with a curb - I should have turned the wheel left, but I turned it to the right. So, he was a nice guy, which makes me believe that if he COULD have passed me, he would have.

I am very disappointed to not have my license now, but am happy to have followed Millie's advice to approach the first test as a PSAT to discover what the test is really like. So, here I am today, in the same situation I've been in for 18 months- not able to drive by myself. Except that now I know what's required - and I'll let everyone who should know know so that they'll have the correct and complete answer the next time a hemiplegic person asks them the driving requirements in this state.

Now, if any of you are wondering why I never wrote about the upcoming driving test in this blog, I'll tell you: I didn't want to have to tell people that I failed. It was bad enough to fail, but the last thing I wanted was to have to admit it to absolutely everyone. And yet here we are. Post-stroke, there is no place for pride.

canes

2011-05-24T15:51:00.000-07:00

When I left rehab, I had a quad-cane - one of those canes with a flat plate near the bottom with four legs below the plate. Its design is to make it more stable when weight is on it. After a couple of weeks of therapy, my PT determined that I could do with a regular cane, so Tom went out and bought me a blue-speckled one with a flat padded handle - the ones with curved tops make your hand sore pretty quickly.

Recently at a friend's house, I saw that she had an umbrella stand with a half-dozen lovely canes standing in it. When I told her that I had cane-envy, she told me that she has a disabled friend who decorates canes. The next time my friend came over, she brought along her cane-making friend, who had a beautiful cane for me - it's decorated with bunches of grapes and grape leaves, all beautiful pinks purples and greens, and has a polished brass handle (flat and with padding). She, herself, has a neurological problem that leaves her in pain, especially when she walks.

That is one thing I've found - that strangers are eager to help me. Yes, every once in a while, someone crowds me so that I fear I might fall, but usually people give me enough space; and sometimes I get honked at while I'm driving because it takes me longer than they want to turn left into a driveway or a car stays impatiently on my tail because I'm driving the speed limit. I like to think that the stroke has made me more tolerant of other people's limitations.

Mostly, though, strangers hold doors for me, step back when we are both going through the same doorway, ask if they can help me off the train or into a car, pick up anything I drop, close the car door for me, steady me when I lose my footing.

Now, when I see someone driving poorly, I always think,"Perhaps the driver is recovering from a stroke." I would never consider honking unless it could prevent trouble.

after a week off

2011-05-24T11:35:00.000-07:00

Spending the week away meant a week away from most of my regular exercise routine, which had me worried. Yesterday, though, I did all the usual Nautilus machines, with the weights slightly lower; and today I rowed 2 miles on my machine without any trouble.
That puts me at 80 miles in my 100-mile goal.

Today I also carried my lunch (on a plate) down the steps to our back stoop so that I could eat outside watching Turbo. That meant going down the stairs without a cane and holding something as I did it. It made me happy to eat outside on the bench because it was 70 degrees and sunny.

Sweden, the return

2011-05-22T10:30:00.000-07:00

Having fortunately skittered out of the airport in Iceland 30 minutes before a nearby volcano erupted and the airspace closed, we returned home last night. It was a tremendous trip and I would go back in a New York minute.

My greatest accomplishment was that I spent a week there, walked about a million miles and wore my AFO just during the trip there and the trip back. Of course, I wanted my AFO in Sweden "just in case" - examples: if I twisted my ankle and wanted to continue sightseeing/walking; if every walking surface was uneven and my little black support brace didn't work so that I couldn't go anywhere. Nothing happened, though, that required its use. I did skip going to a sculpture garden I wanted to visit - the garden has gravel paths amid grass lawns and I did not want to take that chance with my ankle. As it was, I walked carefully across gravel at a glassworks store we went to in Sigtuna, and I had a terrible time. The shopping was fun, though, so it was worth it.

So, It was a week of walking in a strange city and not a minute's use of the AFO.

sweden

2011-05-17T02:03:00.000-07:00

Sweden. who knew that the king's palace in Stockholm is surrounded by every kind of cobblestone in the world? when we went there yesterday, I expected smooth surfaces. instead, there were small round cobbles, large round and small and large flat squire and rectangular ones.Plus hundreds of steps inside, from the formerly rat-infested cellar up to the gilt pillar room where citizens used to receive awards from the king.We took a bus tour of the city, too, so we were not walking the entire day.I wore my small black Velcro ankle brace, which I have not previously successfully used on uneven surfsces. More progress.

another accomplishment for me was making my way through Central Station during rush hour in order to take the commuter train back to Sigtuna, where we are staying. although there was plenty of opportunity to be jostled, I managed to make my way through the crowd, my friend Kerstin setting a pick and Tom at my back. Millie often scouted ahead to find restrooms, stairways, elevators and entrances as needed.
obviously, I need a lot of support when traveling.

for dinner our first night, Kerstin made traditional Swedish food:elk sausage appetizers, smoked reindeer with horseradish, salmon with dill sauce, radishes, asparagus with a red bell pepper sauce and salted boiled potatoes. and princess cake, soy "ice cream" with cloudberry sauce for dessert, which we had three servings of. A perfect start.

today is a tour of Sigtuna, which is an ancient area outside of Stockholm.

to the end of the road

2011-05-09T10:21:00.000-07:00

I looked back through my blog to see when last year I first walked all the way to the end of my road (that was with the brace) because yesterday was the first day I walked to the end of my road and back WITHOUT the brace. Tom, Turbo and I went for a walk on Mother's Day because I wanted to; walking to the end of the road was not my goal when we started, and by the time we got there, I'd been thinking about turning back for a little while because my legs were so tired - the left because I kept concentrating on lifting my knee and the right because it carried most of my weight throughout the walk.

When we started the walk, I had foolishly thought I could make it to Brace Cove, which is about twice the distance we ended up walking. That can be my next walking goal, with the 2-mile walk around the Eastern Point circle the goal after that. Patience, Barb.

potatoes au gratin

2011-05-06T14:46:00.000-07:00

Tomorrow, Tom and I are going to a potluck dinner at a rowing friend's house. Patricia ad I decided today that we would prepare the dish so that we didn't impinge on whatever Tom wants to do tomorrow. Because of a plethora of potatoes and too many chunks of cheese, we decided on potatoes au gratin. I grated the cheese by standing the metal grater in a small, deep bowl and, for the first time truly, used my left hand for a functional activity - pressing down on the handle of the grater. I set it up so that as the bowl crept along the counter, it ran into my abdomen - and it worked! My left hand pushed down hard enough to keep the grater in place as my right pulled the cheese down the teeth.

Patricia heated the light cream while I sliced the potatoes. I had two kinds: regular red potatoes and 5 pounds of red and yellow fingerlings. I stabbed the regular ones and cut them in half, then sliced them with the flat side down on the cutting board. Of course, I didn't make them thin enough, but I did my best. For the fingerlings, I invented a way of slicing through and then lifting to make a disk, which stuck to my knife so that I could slide it off the knife with my thumb onto the cutting board. I felt the wrong edge of the knife a couple of times, but never cut myself, so that was a success. Then there was the layering and putting into the oven. Patricia had to do the final step because the recipe called for putting the casserole into a hot water bath and then into the oven. I decided instead to have her put the casserole in a larger casserole into the oven and then I pulled out the rack and poured the hot water into the outside casserole dish. Patricia also had to pull the whole thing out of the oven - not a one-handed task.

2011-05-05T03:53:00.000-07:00

Yesterday:

as a shoe-lover, I have been discouraged buying shoes because of the need to buy 2 pairs to have 1 pair that fits. For our trip to Sweden though, I need a pair of good walking shoes that I break in before heading there.

Yesterday, for the first time since the stroke, I went into my favorite shoe store in downtown GLO and bought one pair of shoes - black SAS walking shoes, plus some coiled laces so that I don't have to tie them. Then Patricia and I fooled around trying to tie a shoelace one-handed. I've looked online for a way, but I don't like any of them because not one looks like it was tied normally. I like to keep my standards high despite my very good excuse not to. I finally figured out a way, but it would not untie easily, which defeats the purpose, right?

anyway, I now have a comfy, good-looking pair of new shoes, and black, too, to finally match most of my clothes instead of wearing putty-colored, Velcro-close shoes with gray/black pants. there's that vanity again.

and since my failure during the battle of the bra, I've worn one every day, putting it on myself using the clasp-first step-through approach.

Saebo

2011-05-01T15:38:00.000-07:00

About 10 days ago, in preparation for me to get ready for a fitting for the SaeboFlex arm gadget, which is designed to aid the motion of a recalcitrant arm and hand, my OT made a splint for my left wrist and hand. I am to wear the splint throughout the night and I have been. In addition, I also wear it if I have long periods with nothing to do - like going to my mother-in-law's house for the weekend, which was 6 hours in the car Friday and then again today. At the end of each stint in the splint, my hand is relaxed and not spastic. The spasticity started for me just a couple-three months ago, but has gotten to the point that I must pry my fingers out of a fist to put on the splint, and get help from Tom. The same relaxation happens to my hand when I use the Nautilus equipment at the Y - I clench the handles on the leg machines and by the time I get to the 4th one, my hand is limp.

Tomorrow, I go to be fitted for the Saebo device and I will get a demonstration from another patient who uses it.

I am very excited about it. I'd cross my fingers, if I could!

This is for women only: It's about bras

2011-04-27T06:22:00.000-07:00

This morning, I stumbled on a "stroke comic book" blog, which, of course, attracted my attention. Written by a woman who had a stroke 4 years ago at the age of 26, the entries, which were all amusing, were thought-provoking too. Each was accompanied by an illustration/photo. For example, in one, a beautiful woman with a large rack and an arm missing from the elbow to the hand, was wearing lingerie and staring at the camera. The caption read something along the lines of, "Look at my eyes, yes, my eyes."

In another entry, she posted a photo of a woman in an old-fashioned full-length bra, along with the question: "How do you put on a bra one-handed? Comments, please."

Among the dozen answers, including one from a man, was one from a stroke survivor I know from online. Her answer was that the day she could put on a bra two-handed would be a milestone [or would let her know she has recovered or something along those lines.]

My response, of course, was to declare to myself," I'm wearing a bra today."

Like many acts now, the decision was easy, but the implementation more challenging than I expected.

Because bras have been so difficult for me in the past, I had given up long ago and switched to camisoles, which are easy.

But I am far too young and too vain to wear camisoles much longer. Sure, if they look like undershirts, I can wear a scarf, vest or sweatshirt to cover the evidence, but that's not always appropriate ( think: in the gym, on an 80-degree day, etc.)

Back to this morning's challenge...

My first OT had suggested fastening the strap and then pulling it on overhead, as he had taught me to put on T-shirts - which seemed to me to be a guy's solution. Ditto my second OT, a woman. After that proved sporadically successful, I created a third possibility: fastening it, then climbing in, like I put on panties, then pull up to under my breasts, straighten out the band around my ribcage and then pull the straps up over my shoulders. There is often the problem that between sticking my feet in and getting the bra as high as it needs to go, the straps and/or band get tangled together so that the straps are irretrievable.

This morning, I picked out a soft pink Henley that looks awful over a camisole, as insurance that I would be successful (although I did decide which scarf I would wear should I fail).

After 10 minutes of attempting to get the latch fastened - I had purchased it online because it had a front closure, which I had thought would be helpful - I was successful. Again, my teeth were invaluable.

Pulling it on, though, several times I put one leg through the hole for an arm, I stepped into it with the bra backwards, and so on; then I would pull it off and try again, only to fail. After 20 minutes of that, I was quietly crying and opted for a camisole and scarf. As soon as I finished putting those on, Patricia came down the hall, calling for me because it was taking me so long to dress. When she came in and saw me crying, she recognized it as something other than my "I hate my life, I hate my body, I hate my mind, I am so tired of this," cry, and she convinced me that, although it was important to me to do it myself, I should let her help me.

When she picked up the bra, after admiring it (it is purple lace, after all), she discovered that, in closing the clasp, the band was already twisted and there was "no way" I would have been able to get it on correctly.

When she was leaving the dressing room, Patricia ( a yoga instructor for 20 years) said,"Yogi Bhajan said that now, during the Age of Aquarius, no one is going to get into heaven alone.

We are all interdependent. That's yet another lesson I've learned through this ordeal.

I am now sitting here in my bra, Henley, and jeans writing this blog and knowing that I can try again tomorrow.

my ankle

2011-04-25T08:13:00.000-07:00

Patricia and I went to Walgreens this past week and bought a small ankle brace that I'm sure would not be okayed by any of my health-care providers - it's black and has lots of Velcro. It straps around the arch of my foot, then my ankle, then two more straps cross the top of my foot. There's a strip of metal imbedded in the material on either side of my ankle. It's nowhere near enough stability for me if I seriously twisted my ankle, but it does provide enough that my ankle stays pointed straight ahead as I go down steps, which especially helps when I go out our kitchen door - the final step is down onto uneven pavement that always worries me.

Unfortunately, the brace is not supportive enough for me to walk on squishy ground, grass, rocks or the beach, so I still have to wear my massive one for that, which I found out yesterday when I ventured out to the side rocks, first across grass and then up a granite outcropping heading for an Adirondack chair, which Tom ended up moving to me instead of me moving to it - then he fetched my massive brace and shoes for me to move onto my rolling gardening stool and weed for a while. It was a gorgeous Easter - sunny and very nearly hot - and I ended up getting sunburned on one side of my neck. I sat out there with Brian and Millie, while Tom and Patricia gardened in the brambly parts of our yard.

It was disappointing that the black brace was just not enough, but the experience made me more determined to get the smaller therapist-approved brace. One reason I haven't been pushing for that one is because I just spent a year trying to get back the use of the muscles that had atrophied because of using the first brace and I certainly don't want them to atrophy again because of reliance on a new, smaller brace. A compromise, I think, would be to use the small one only when I need it and go without it the remainder.

toe press

2011-04-22T10:46:00.000-07:00

Yesterday, Pat had me push out the leg press with my legs, then lower my left foot so that I was holding the bottom of the plate with the toe of my shoe. She had me point and flex 12 reps - and I could do it, even at 65 pounds! And my legs did 3 sets of 12 reps at 85 pounds.

It's easier to flex with the weight pushing against my toes, but I was most impressed by the pointing, which I have a lot of trouble with without weight (does that make sense?)

rowing machine records

2011-04-10T13:28:00.000-07:00

As I've been rowing on my machine, I've been trying to be able to increase my speed and apparently it's been working: this morning, I rowed 3 miles: the first in 12:36 (a personal best for a one-mile row ); the second ended at 24:50, which is 12:14 for the second mile; and all 3 miles took 37:07, which averages 12:24 per mile, which also beats any row I've done previously. Hooray for me! The Siren Song was launched this weekend, which means that the season has officially started. I'll have to get together some friends who are willing to go out with me for an experiment with my new, improved splint. I think I'm fit enough. The questionable aspect is whether I can stand and set my oar using mostly my right arm. That's the experiment.

arm wrestling

2011-04-05T14:08:00.000-07:00

Obviously my friend Pat helps me in a tremendous number of ways. One important one is that we laugh so much together. Today, we went out to lunch because I was having a bad day - and food tends to cheer me up. I wasn't extravagant or anything - no chips,dessert or fries - just a grilled chicken sandwich with provolone, spinach and carmelized onions. While waiting for the food, Pat insisted that we arm-wrestle. We moved our cups of tea out of the way and started. We were using our left arms, the weaker one for both of us. After I won the first 3, Pat wanted to keep going, so we did. After 10, she insisted that I let her gain some ground so that I was pulling my arm up some rather than just down. Although she is nearly perfect, Pat actually is a wimp when it comes to arm wrestling. Maybe she'll let me take it easier on the arm equipment at the gym, but I hope not.

More back-float laps in the pool

2011-04-04T15:14:00.000-07:00

I did 4 laps doing the back float today... Most of the time laughing enough to drown. I called what my left leg was doing "flailing," but pat called it "kicking." I said,"what kind of lifeguard were you? You probably saw someone drowning and just ignored him, saying," no, he's swimming just fine." Really, my form was just terrible today, but I went the distance. another first... I also walked through the water in the shallow end not hanging on the wall, leaning on Pat or using a floaty thing. It was just me and my Keens,no brace, no cane and no cane-substitute. It felt good.

yoga for the movement-impaired

2011-03-28T06:25:00.000-07:00

Last Friday, I went to a yoga class led by a woman who is a stroke survivor ( she was 11) who has Parkinson's; the class is designed for people who are "movement impaired" and was very encouraging. No stroke survivors there, though, except for me and the teacher. It reminded me in a way of the paraplegic who wrote,"Wakenings: A Story of Trauma..." The author became a paraplegic at 13 (in a car accident that killed his father and sister) and then went on to be freed through his practice of yoga, eventually becoming a teacher himself.

The movement-impaired class teacher has a DVD and a book of instructions. If anyone is interested, please ask me for details.

Pool goals

2011-03-27T05:55:00.000-07:00

Yesterday at the pool, I was able to (very nearly)kick both legs while in deep water and wearing a floaty thing around my waist. Pat's goal is for me to be able to run in place in the deep end with the waist floaty thing. One problem I had was that the Keenes on my feet kept running into each other so that there was a snag at the lowest point of each kick. my goal is to be able to go in a lap lane with my arms in front, holding a kickboard and doing laps just kicking; it's like being 5 again.

another accomplishment... The first time I did the back float, I did one lap and yesterday I did 2 laps. I'll get to a mile yet.

end of day 4

2011-03-24T15:11:00.000-07:00

I'm just finishing up Day 4 of going without my ankle brace. 2 last week, 4 this week - so how many next week? Can I go all 5 weekdays? It impresses me, but not my PT - she's okay with me doing it, but would prefer to see me without a cane, too, and with an improved gait.

She looked out the window at rehab and said something about the "two cute little old men" leaving the building. They both wore those flat wool hats with a brim and they really were adorable - both tiny and ancient, one with some papers in his hand and the other with one hand holding a cane and the other hand holding his friend's upper arm, shuffling toward a car. "So, which one of them is going to drive?" Mary asked. "Seriously, does it make sense that one of them can drive and you can't?" Mary has recently been trying to find out what a driver "competency test" entails so that if I don't have to keep practicing parallel parking, I can stop frustrating Tom and myself and just go take the test.

crossword puzzles

2011-03-22T18:51:00.000-07:00

Before the stroke, every week I enjoyed completing the crossword puzzle in the Sunday Boston Globe Magazine - and I always did it in ink, completing it without looking up any answers; sometimes I didn't finish on Sunday, but by the next Sunday, I was always finished.

The day I had the stroke was a Thursday and, because I had not yet finished the crossword puzzle, I asked Tom to bring it to me in the rehab hospital. But in the 4 weeks I was in rehab, I I was never able to finish that one, and every week since then, I've tried and failed. At one point, I even started using pencil, but that didn't help.

This past Sunday, though, I completed it (and in ink) EXCEPT for one word: 5-letter last name with the clue: "Fox TV host Lou." First letter: D. Given that we don't watch TV, I suppose it's not a grave failing to not get that one.

The easy part about this last puzzle was that the gimmick was that many of the solutions were palindromes - so if I got a letter in one half of the phrase, I could fill in a letter in the other half.

Now let's see what I can do with next Sunday's puzzle...

48 hours without the brace

2011-03-19T04:41:00.000-07:00

entries about this "going without a brace" topic might be getting old for you, but to me are building my excitement about returning to my former life...I just spent the last two days without, even though I went for walks, used the rowing machine, did morning exercises, went to the grocery store, prepared a boiled dinner for St. Patrick's day, had a shiatsu treatment, went to a neighbor's house for mah jongg, went to PT and OT, and went to dinner at the restaurant where Millie works. all the stairs, inside and out, were without the brace. rather than reserving my brace for the stairs in my house, I do without it and use the carpeted stairs to go down, even when I'm all by myself. my ankle has not rolled even once through all of it! that means my ankle is stronger now than the morning I had the stroke and it could not support my weight at all. I did everything I would have done with the brace except climb over the rocks and out the Dogbar Breakwater.

today, though, I'll wear it, after 48 hours without, because Tom and I are gardening all day (it's 40 and sunny this morning and expected to warm up as the day progresses) and I don't think scrambling around on the rocks without the brace is a good idea...even I have some limits.

walking outside without the brace

2011-03-15T16:01:00.000-07:00

Today, in addition to walking around my house (including up and down the stairs a half dozen times) without my brace, Pat, Turbo and I walked to the end of my street and back, which is about a half-mile, without it. I know that I don't walk properly and I'm concerned that long distances of doing it "wrong" is a bad idea, so I concentrated on lifting my knee and stepping heel-toe. Again, like much of what I do, it wasn't pretty, but it felt like an accomplishment, something that can often be in short supply. And I was tired at the end, but nothing that tea and a brownie couldn't fix. Then Pat and I worked on organizing the books in the new library and, to carry books, I had to go without my cane, which was not as scary as it was last Thursday when my PT told my OT that I didn't need it and made me leave it in the PT room.

Last year at this time, I both ventured out by myself for the first time AND, on a different day, walked to the end of my road and back for the first time. Progress!!!

back on my back (in the pool)

2011-03-14T15:20:00.000-07:00

Today, during Pat and my trip to the Y, we went into the pool. Again, I could walk through the water lifting up my left knee step after step.

The big news is, though, that Pat found a long-handled dumbbell-shaped flotation device (although it was labelled quite clearly with,"This is not a flotation device," as all pool floaty things are); I grasped the rod in the center with both hands - one well and the other lamely - and laid back in the water withe the dumbbell across my abdomen. Pat kept her hand under the back of my head to keep us connected and so that she could steer (she called it guiding, not steering). As I floated and kicked gently - that rolling boil at my feet - Pat backed through the shallow end to the deep, her hand under my head and my kicks propelling us both the length of the pool, which is 25 yards, Pat said. After a brief rest at the wall at the deep end, we did the same to the other end, for a total of 50 yards. Pat, of course, encouraged me to go for a quarter of a mile, but having my head in the water quickly chilled me, so I declined. Maybe next time...