Saturday, April 12, 2014

Goodbye To Our Helper

We said goodbye to our last babysitter/housekeeper/all-around-helper. We have had many helpers since the stroke, but she has stayed the longest. She knows the good things about our family, and the not-so-good.

She has come most weeks for two-and-a-half years to help with a dizzying list of tasks: walking the kids home across a snowy park; doing the grocery shopping; taking the kids to swimming lessons; preparing snacks for two cranky kids; hugging me when I was crying; doing the laundry; supervising playdates; driving me to appointments; making dinners; watering the plants; taking the kids to museums; washing my daughter's hair; reading aloud to my kids; bringing packages to the post office; putting my daughter to bed; saying "no" to the pleas for more cookies, etc.

We will miss her a lot. My daughter is especially sad: they have a special bond. But I'm getting better, and the kids are growing up.

Thank you so much, Linda.

Monday, February 17, 2014

My Ataxia

There's a stunning lack of data about recovery for someone who's in my situation--healthy (pre-stroke); in their forties; and more than a year out from the stroke.  Often I just make up my own theories about the process of recovery.

For instance, I have ataxia (Amy's blog talks about cerebellar ataxia, but from what I understand, my stroke didn't touch my cerebellum). My physiatrist has noted my ataxia seems more noticeable now than a few years ago, but we haven't talked about why that might happen.

This is my theory about it: the ataxia is a good sign of pushing to the limits of my range of movement. Very slowly, I'm gaining more range of movement. But each millimeter (or so) of increased range takes a huge amount of effort and exercise. It takes a while for my muscles and joints get used to the new way of moving. The ataxia gets better with exercise--until I gain a tiny bit more of range of movement, and the cycle will start again.

That's my theory.

I made a video to show how tiny changes of position can set off my ataxia. The video is probably confusing, because I blabber on about "good" and "bad" positions. When I say a position is "bad," I mean that I'm compensating a lot for weak muscles (even though most viewers can't see much a difference); a "good" position challenges my stability--leading to more strength in the long run. I think.

Sunday, February 9, 2014

Four Years Ago

The last time the Winter Olympics happened, I watched them from my bed at Spaulding Rehab.

Someone from my family would come almost every evening--usually mother. She would help me eat, and keep me company. When it was time to watch the Olympics, she would turn on the TV and put it on the right channel. Changing the channel was still mystifying for me.

Thursday, January 30, 2014

It's Greek to Me

My aphasia is mild now. I can have a conversation. I can write short emails without too much trouble. And of course, I can write a blog.

But the aphasia is still there. Even the people I'm closest to sometimes don't realize that I'm struggling in certain ways.

For instance, I still have some auditory processing problems, especially with numbers. Last April, my mother and I were watching the Boston Marathon on TV (this was before the bombs went off, when finishing times still mattered). We were enjoying hearing about Joan Benoit Samuelson, a fellow New Englander who had won 30 years ago. In the commercial break, my mother and I had a conversation that went something like this:

Mom: Wow, 2:ΣΨ:ΠΏ. They had said that she wanted to finish the marathon in under 2:ΣΔ:ΓΦ.

Me (looking blankly at my mom): uhhh…

My mom probably decided that I couldn't hear her.

Mom (in a louder voice): I said, she wanted to  finish the marathon in under 2:ΣΔ:ΓΦ, and Benoit’s time was 2:ΣΨ:ΠΏ.

Me (still looking confused): uhhh...

Mom(in a loud voice, again): it was two minutes under the other time.

Me (in a loud and agitated voice): Mom, don't you know that I can’t understand numbers?

It was my mother’s turn to look blank. We had a short conversation about how my brain can't handle numbers in certain situations, and then we went back to watching TV.

Sometimes I think that recovering from a brain injury is like peeling an onion: there's always another layer to peel. Each layer gets thinner and harder to see, but I know it's there.

(Fortunately, I can usually understand written numbers. Samuelson's time was 2:50:37, better than her goal of under 2:52:43. Go Joan!)

Saturday, January 18, 2014

My Cane

Around of the end of last summer, I started walking around my neighborhood without a cane. It was a little scary at first, but I'm happy that I've made the leap (so to speak). I'm putting more weight on my affected side, and in general I feel stronger.

But I still do use my cane, especially in bad weather. I also use it, for instance, when I go to a store; or to a meeting; or any time I might encounter a crowd--especially a crowd of children. When I have my cane, people give me more room to pass. They hold doors. Parents ask their children to step aside. When I can't spit out the words at a normal pace, people (usually) give me more time to speak if they see the cane.

Sometimes I think I should ditch the cane, but I wish there were some other way to signal that I might need extra space or time. I guess I could hang a sign around my neck, that says: "Warning: Brain-Injured Person," but the cane does seem more elegant.

I have many canes, but this is my favorite

Monday, January 6, 2014

Piano Therapy

Since the spring, I’ve tried to practice piano regularly. It doesn’t sound much like music yet, but I have progressed a lot since the early days of my recovery. I work on scales, basic exercises, and pieces I learned when I was in third or fourth grade.

Sometimes I do have a good cry at the keyboard. I miss making real music. But I do think that trying play the piano has helped me a lot, in unexpected ways.

When I practice, often I don’t focus directly on finger dexterity, because it’s too frustrating. I still don’t have much sensation or proprioception in my hand and arm. So I focus on looking symmetrical while playing. I compare the angle of my right wrist to my left wrist, or left chest or the right chest,  or the angle of my forearms.

Then I make tiny adjustments of position or posture, and at some point, I usually get a sudden feeling of awakening in some muscle in my right side. Usually it’s a muscle (or group of muscles) in my trunk: my shoulder, or upper back, or my chest, or my abdominal muscles. It can be a stretching feeling,  or a heavy feeling, or an itchy feeling. But that feeling of my body waking up is addictive. So I try to hold on to that feeling, and make it happen again.

One day a few months ago, I was getting tired after about 15 minutes. I needed a change of pace, so I decided to really  to work on arpeggios for the first time (but with  my left hand--it’s too frustrating to try with my right hand at all). When I (and most people) play arpeggios, I have to lean from end one of the keyboard to the other end, and back again. So I leaned, and voila: I had that wonderful awakening feeling--in my right buttock. Now I think of arpeggios as “butt practice.”

I’m sure I could find a few reasons why regaining sensation in this part of my body is good. But the biggest is very utilitarian: any gain of sensation also helps me regain strength, and any gain of strength helps me to improve my gait. In stroke recovery, everything is connected.

Monday, November 25, 2013

Treat or Trick

On Halloween, I stayed at the house, while my husband went around the neighborhood with my daughter and some of her friends. They were the first trick-or-treaters to arrive at our house, and I could hear their excited chatter as they came up the steps. I was a little bit nervous. I wanted to greet them with the right mix of warmth, surprise, and admiration. I was also nervous about spilling the candy, taking too long to open the door, or tripping on the rug.

The doorbell rang. I opened the door, I mustered my enthusiasm and and said,

"Trick or treat!"

The children looked at me. I looked at the children. After a moment's hesitation, the children dug in to the candy bowl. As the children started to file back down the stairs, my daughter looked at me.

"Mom, you don't have to say 'treat-or-treat,'" she said coldly, without waiting for my response before leaving.

Did she understand that the aphasia that made me say the wrong thing, I wondered? Or is she already feeling that all moms are clueless, anyways?

I closed the door. Under my breath, I said: "Happy Halloween! Happy Halloween! Happy Halloween! Happy Halloween!"