Thursday, July 24, 2014

Problem Solving

I'm a tall person, and I think of myself as fairly resourceful too, so I'm always surprised when I can't figure out how to get something from our high kitchen cabinets now.  It was never a problem before the stroke.

Obviously it's harder physically now. But I think there's something else going on. Maybe mild cognitive impairment? Or learned helplessness? Or mind-body connections that are still being forged? Maybe all three.

For instance, the other day I wanted to make a smoothie. But our immersion blender was in the back of the top shelf of the cabinet, just out of reach. Usually, I just ask my husband or my children (who can climb up onto the counter) to get something I need. But I was alone, and after a few failed attempts to reach with my good arm, I was about to give up on the smoothie idea. Then I spotted the container of cooking utensils on the counter. I picked out a big cooking spoon, reached up, and gently dragged the immersion blender right up the the edge of the shelf. From there, I could grab it. When the kids got home, we shared a blueberry smoothie.

I was pleased that I figured out how to get what I needed. But later, I thought: wow, it took me more than four years (and a cooking spoon) to solve this problem.

Saturday, June 14, 2014


I know that some people who have aphasia find singing very helpful. For me, singing is more frustrating than speaking, especially now.

For instance, the other day I tried to sing the chorus of Yankee Doodle. This is what came out of my mouth:

Yankee doodle wake it up,
Yankee doodle dandy
Mind ta ta ta ta ta ta
And let the girl be handy.

Just so you know, I sang this song before the stroke with my kids, and I have sung it approximately 63 times since the stroke. I have looked at the printed lyrics several times since the stroke. But each time I sing it, different words come out. (Here are the real words.) It's not a big deal except in church, where I worry about my mouth saying surprising things in a hymn.

I have some guesses about why singing is harder than speaking for me. I still have mild aphasia, but I think the motor control issues I have--such as apraxia and dysarthria--come to the forefront when I sing. Sometimes if I slow the tempo down--way down--and have the lyrics front of me, I can get through it without making hash out of the words.

But sometimes I think this what is really going on: I have gremlins in my mouth. Often, they're sleeping. But they like music, and when I start to sing, the gremlins wake up and dance in my mouth.


Monday, June 9, 2014

Just Like It Sounds

I have been driving into Boston once a week and volunteering at the rehab hospital. When I'm done for the day, I have to stop in the lobby and tell the guard my name so that he can validate my parking ticket.

"Carpenter. Just like it sounds," I tell him.

He starts to the write down the name. "C-A-R--?" he says, with a question mark in his voice. He assumes I will rattle off the rest of the the letters in my last name.

I hesitate. "T," I say, "I mean, "P--" My mouth gropes for the next letters. I want to say "T," but I have a feeling that I'm mixing up letters and sounds. After what seems like a long time, I tell the guard,

"I can't say it. I have aphasia," I say.

He looks a little bit embarrassed that he had asked me. "Don't worry,"  he says, "that's good enough," and stamps my ticket.

I can easily write down my name on paper. And if I had an unusual name, I would probably tried harder to work on spelling out loud. But stroke survivors have to chose their battles, or at least, prioritize. So I read aloud to my daughter; I work on my walking; I usually make dinner--these things (and many others) are really important to me. But for now, being able to spell "carpenter" out loud is still way down the list.


Wednesday, May 28, 2014

Upstairs, Downstairs

When I climb the stairs after my daughter's bedtime, it takes me back to my own childhood.  I remember falling asleep to the sounds of  the rest of the family going about their business.

My father was (and still is) a fairly quick walker. But when he climbed the stairs, his steps sounded ponderous. Between the landing and the upstairs hallway, he often punctuated his steps with a long burp (sorry, Dad).

I could recognize my mother by her sprightly, rhythmic steps. Sometimes she also whistled softly (as she still does) with her classically trained warble.

I'm sure my daughter recognizes the sound of me going up the stairs. I don't lean on the railing the way I used to, but I still need it. My gait is uneven, and there's nothing remotely sprightly about it.

There have been times when I thought that full recovery was right around the corner. Now I realize there's a very good chance that when my daughter is a teenager, I will still need the railing.

I have many identities: mother, music-lover, aspiring writer, wife, daughter. Am I ready to tack on this one: disabled mother?

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.