Mysteries of Stroke

I still have so many questions about the way my body works, post-stroke. Some are general, like why does cold make spasticity worse? Other are more specific to me, like what's the deal with my toes?

A lot of survivors have problems with toes curling under, making walking painful and making it easy to trip (see posts from Home After a Stroke, Up Stroke, Dean's Stroke Musings). In contrast, when I walk, my toes on my affected (right) side barely make contact with the floor (other than the big toe). My toes go up, as if I am trying avoid getting a splinter. 

Yet I do have a lot of spasticity everywhere, including in my feet. In some positions--often when I'm sitting up and putting on my socks, for instance--my toes often get all scrunched up, as you see in the photo on the right. (My unaffected side looks, well, normal and flat.)

I'm thankful that the position of my toes is not painful. It's also not causing me to trip. But I'm almost certain that it's affecting my gait for the worse.

When I ask different doctors some of these questions, I often get a shrug, literally or figuratively. Physical therapists are much better at answering these questions, but even PTs have been stumped about the toe issue.

But I still need answers to get better. Who will answer these questions?

Free At Last--Sort Of

I've started to tell people my good news: I passed my driving test in September.

"That's fantastic!" people say. "You must feel so free now!"

I'm very proud. It's a big milestone. But it's not as liberating as I wish.

It's partly that I'm still getting my confidence back as a driver. To feel comfortable, I have to plan the route ahead of time, mentally going through busy intersections, rotaries, and tricky parking lots. It's partly that the most simple errands are a lot more physical work now--from getting my coat zipped up to wrangling a shopping cart with my uneven strength. And it's also partly that I tire very easily, so I only drive around my town or the next one, for now.

But the biggest reason is that it's the first time that I've felt the weight of total responsibility since the stroke. Although I have responsibility for my kids when I'm alone with them, they are old enough that I don't have to watch them like a hawk. Driving is different. I've spent a lot of time in a rehab hospital over these years. I've seen the results of serious car accidents, and the wreckage of people's lives.

Childhood, Revisited

The last time I walked to school with the kids with any regularity, my first-grader son would trudge along, and he often wanted to hold hands--even though I was pushing a stroller with my daughter in it, even though I was constantly urging him to pick up the pace.

I've started to walk the kids to school in the morning again, about once a week. My son, now 10 years old, dashes out the door as soon as he sees the neighborhood pack of boys walking up the street. I don't see him until after school. My daughter hesitates as I come down our front steps, then she hurries up the road to walk with her friend. She does want me to wait in line at school with her, so right before she gets to the school, she stops and waits, until she sees me and my cane.

I remember walking to school many years ago with my two sisters. I was the youngest. Every four or five steps, I would have to run to catch up. Sometimes I can hear my own childish voice:

"Wait, wait!" I say with panic in my voice, "I can't keep up!"

Those Uncomfortable Feelings

A friend's mother had a stroke about nine months ago, and I've been getting updates about her for a while. I saw my friend a few weeks ago, and she mentioned that her mother has recently having gastrointestinal problems. My friend didn't go into details.

It brought back uncomfortable memories. After the stroke it could have been so much worse, but still: I have felt sick to my stomach so many days since.

I had one real GI crisis about four or five months after the stroke, when I was directed to take iron supplements, and Neal and I both misunderstood the directions. It took me about a week to figure out why I felt so awful: I was taking about 3 or 4 times the correct dosage. I had alternating bouts of diarrhea and constipation, and constant nausea for about 6 weeks. I lost more weight, which wasn't a good thing.

The whole stroke recovery has reminded me sometimes of being pregnant: a few periods of crisis, then this off-and-on stuff.  The threat of nausea is always there, even though I almost never get truly sick. My appetite has been very unpredictable. I've often felt like I have a low-grade stomach bug for more than two years.

In general, I'm feeling so much better these days. On bad days, though, I remind myself: I can deal with this feeling--the feeling that my body is a bit of a stranger to me. I'm getting to know this new version of myself. It's like a very, very long gestation. 

Three Blogs

I've never been a prolific writer, but in the summer and early fall--when my kids' routines are changing constantly-- my output slows to a crawl.

But I have been reading other people's blogs (and tweets).  Here are three blogs/websites that I've been enjoying for a slightly different angle on stroke recovery:

Finding Strength To Stand Again : Prosopagnosia (face blindness)

Blogger Tara Fall started to have seizures in her teens. At age 27, she had brain surgery to try to stop the seizures, but suffered a stroke in surgery. When she woke up, she couldn’t recognize any faces at all, including her own. Tara’s blog is an insightful look at an invisible disorder, prosopagnosia. She also talks about her life as a stroke survivor and a person with epilepsy.


Girl With The Cane : Disability Advocacy

Sometimes I’m so involved with my own recovery that I forget how many people are affected by other disabilities. Sarah Levis is a stroke survivor, but she addresses a broad range of disabilities in her writing. Her lively and informative blog is a great way to keep up with the disability community in general.

 Stroke XYZ : Young(-ish) Stroke Survivors

This new website/blog/e-community is geared towards younger (loosely defined) stroke survivors and their caregivers, families, and friends. Isolation--physical and emotional--is a huge problem for stroke survivors and caregivers of any age, so I'm always grateful for any new voices/communities. I'm also grateful for new voices talking about aphasia: Kelsae, the blog author and caregiver to her husband Mike, has blogged about aphasia and the ways that aphasia affects relationships.

 Happy reading!

Derek Who?

I got a phone message a few week ago. It was Massachusetts General Hospital Stroke Service. I was enrolled in a long-term study in right after my stroke, and it was time for my yearly phone follow-up. Each phone call involves about 15 minutes of questions. Some are health-related; other are tests of my speech and cognitive function.

Even though any neurological exam--including these phone calls--might differ a little bit, by now I know the kinds of questions I might be asked. So before the woman from MGH called me back, I did some work. Any good student tries to prepare, right? I made sure, for instance, that I didn't forget the vice president's name. I practiced saying "Methodist Episcopal" out loud. And since I still have some trouble with numbers (linked to my aphasia), I made a Excel spreadsheet that had a column of numbers from 100 to 65 by sevens to review, in case they asked me to count backwards by sevens. Just in case.

I felt very proud of myself. The phone rang.

I answered many questions: how was my health, in general? Have I had any more seizures? What day was it? Do I drive? What's my birthday?

So far, so good. The woman asked me the name of the president.

"Obama," I say. Easy.

"Do you remember his first name?"

Of course I do.

I know, for instance, that "Derek" is not the right name.

"Um, I know it," I say.

These days, I often see words in the inside of my forehead, when I'm concentrating hard. Unfortunately, the wrong letters--D and E--are blocking my view of the right letters I need.

"Oh, I know it," I say. I'm getting worried.

I know I could say it, if only the wrong letters would fade out. But they are bold, strident. I wonder if the woman on the other end knows that there's a wrestling match in my head? I finally pin down the bad letters. The good letters pop into view.

"Barack," I say, with a sigh of relief. It's a nice name.

Vacation

Every year we go to Maine, and stay in a cottage that my parents have rented for many years. Usually we don’t stay very long, but the cottage and the coast are a highlight of my kids' year.

Sometime last fall, the kids and I were telling a friend about the cottage.

“Mama, maybe this year you will be able to swim there!” my son said.

My heart sank. Neal and I often point out to the kids how much I’m improving. But it's still hard to explain to the kids about the all the unknowns in a brain injury. So I tried to say gently that I probably wouldn't be able to swim at the cottage this summer. Maybe for many years to come. Maybe never, I thought.

I was never a strong swimmer, and there isn’t a real beach near the cottage. Either you jump off the dock at high tide, or you go swimming in a rocky cove. To get to the cove, you have go through an uneven field of wild blueberries, then cross a short bridge over a swampy area, then walk down a wooded slope. You arrive in a cove strewn dried sea grass and large pieces of driftwood. You have to wear sandals or water shoes, to protect your feet from the stones, snails, and barnacles underneath. If you wade out through the seaweed, you can often see schools of small fish. My kids love it.

So a few weeks ago, we went to Maine. I didn't try to swim. I did go on a boat ride, though. And I had a great time on vacation. I felt relaxed.

Most days, I watched the kids and Neal or their grandparents setting out to go the cove to swim. I sat on the porch, reading and sipping coffee. I read guidebooks about Maine, daydreaming about the next vacation. I enjoyed listening to the sounds of the coast.

Sometimes I would think about my late grandmother, who went swimming well into her nineties, and I would remember her worn canvas sneakers she used as water shoes. I would think about how hardy my parents are, how they often swim twice a day. How Neal learned that there's no way to gracefully refuse to swim with my family. How my kids are swimming in the ocean.

And every so often I would think, how did I become the broken link?