Tag: walking

Aging with Cerebral Palsy: Can I Still Move My Body Every Day at 44?

danielleshanti

When September arrived this year, a week-long vacation to Colorado loomed. Many people would be excited at the prospect of a trip. I am mostly exhausted by the idea. Over the past months and years, I have become less and less active and more and more tired. With the heat of summer, it was easier than usual to avoid doing the things that I knew would be good for me: stretching on my dedicated physical therapy platform, going for walks, obviously, and participating in the free adaptive exercise classes online or the water aerobics classes at my neighborhood pool. The thought of leaving my home and my cat, traveling, facing airports, shuttles, a road trip, checking into and out of various accommodations that may or may not be accessible… It was all a lot, even though taking a trip was also a good thing. 

We were leaving on September 14th so when September 1st rolled around, I knew I needed to do something to prepare for walking through airports and climbing in and out of a rental car. I took a walk. Not a long walk, just fifteen minutes. But I made myself take a walk. I took off my inside shoes and I put on my outside shoes. I went down the garage steps and I opened the garage door and I maneuvered my body into my posterior walker and I closed the garage door and I walked down my driveway and I turned left onto the sidewalk and I walked. And then I turned around and came home. I parked my walker in the garage, and I climbed the two steps to the house, paused to press the button to close the garage door, stepped over the threshold, closed the door behind me. I sat on the bench, took off my outside shoes and put on my inside shoes. 

Every moment feels like work. Every step toward getting out of the house is a task that I do not want to perform. But that day, I performed those tasks, and I took a walk outside. The next day I did it again. Sometimes I waited until evening and my husband took a walk with me after dinner. One night, it was already 8:30, and I hadn’t walked yet. Ugh. But I took off my inside shoes and put on my outside shoes, and my husband and I took a walk. Not a long walk, just fifteen minutes. Just the same walk up the sidewalk to the teal house and back down to ours. I knew I wasn’t “getting in shape” for the trip, that these little walks were hardly making any difference at all, physically. This was a mental exercise more than a physical one. Could I take a walk outside, every day, for two weeks?

Yes. I could and I did. And I walked through airports. I walked in Colorado. Some days our activities barely counted as walks. We were there to visit hot springs, to sit in hot water. On those days when I was mostly sedentary, I was still outside. I was outside at some point, for some amount of time. When I returned home from my trip, I continued to take walks. Could I take a walk every day for thirty consecutive days?

Yes. I could and I did. And just so I didn’t immediately stop my streak, I took a walk on October 1st, too. Thirty-one consecutive days of activity outside of my house. I did feel proud of myself for achieving that, and I’m glad to know that I’m still able to, even now, even with my body in the state that it’s in. Honestly, I don’t know the last time that I walked every day for thirty-one days. Even during the years that I worked outside the home four days a week, I probably spent one of the other three days inside resting, reading, and online. 

I proved to myself that I can leave my house. I can go outside and move my body. Do I ever really want to? No. Nope. On beautiful days like today, I open the windows and I look outside. But do I want to make the effort to go outside? No. Nope.

Is it depression? Probably. Is it fatigue and chronic pain? Most definitely.

But I did do it, so I know that I can. I can make myself do things that I don’t want to do, because I know they are good for my physical and mental health even if I can’t feel it. But, certain things being good for my physical and mental health is not motivation enough to do them. 

So, why did I do it this time? I think having an end-date helps: every day for thirty days, not every day for the rest of my life. Putting no distance or time requirement on myself helped. Further, giving myself permission not to wear my AFOs also helped. I worked so hard to get ankle-foot-orthoses for both feet, and they do help a little with stability. So why wouldn’t I wear them? They stay inside my shoes. I put my foot in close two straps across my shins. That is literally two more actions per foot than putting on my other pair of outside shoes. (Those have custom inserts inside the shoe.) But somehow, it’s just enough additional effort that I don’t want to do it. I really dislike that I need to wear shoes inside. But my feet need good, firm support, no slippers or slip-ons allowed. So no matter what, I have to take off one pair and put on something else. It’s already double work. Well, unless I just wear my inside shoes out, which I do if I’m just going out onto the patio for a minute. So I gave myself permission to just wear my “regular” outside shoes, which are a little more comfortable, and a little faster than the AFO ones. I removed or lessened every possible barrier, and that left me with the task itself: go the #@$! outside and walk.

Inside shoes with Velcro. Outside options without and with AFOs.

There was no great transformation or realization. I do not now love going for walks. I do not find it any easier to do it after having met that goal. No “I walked every day for 30 days and this is what happened” before and after story. I want to like it. I want to  want to do it. I want there to be a transformation or realization. Alas, I am still exactly my same self.

But I did do it. And that is something.

Life with ExoSyms Days 9–14: First Days at Home

danielleshanti

24–28 June

When I complete my training week at the Hanger Clinic, I have this idea that I need to keep up the momentum. The whole summer is ahead of me, and I have nothing but time. I need to wear my ExoSyms for a minimum of two hours in the morning and two hours in the afternoon, just like at the Clinic, and build up from there.

And then there’s two days of driving, and a trip to the redwoods. Then I’m tired and it’s hot and I haven’t been home in ten days. First, I’ll rest. I’ll practice later. Already, I’ve lost the momentum. Life is not a montage.

Even though it’s nowhere near four hours a day, I do practice walking in my ExoSyms. I can move around the house in them without poles, but I find that I am lurching from furniture to furniture. It’s almost as if I’m wearing roller skates, and I don’t know how to stop. Or steer. It’s hard for my brain to realize I have more balance in these, not less. That I can let go of the table and stand up straight.

After the unexpected calf swelling, it’s taken a full week for my calves to feel like they fit properly into the cuffs, that the cuffs can close without squeezing them. 

I’m doing the ab exercises that Jared assigned. And I took a couple furniture sliders from my parents’ house to use under my feet for the exercise he had me doing on rectangles of carpet. Pointing my toes inward and then outward. The hardest thing ever. I am definitely not doing thirty. Maybe I’ll work my way up to that. 

On Friday June 26th, a week after leaving Hanger, I send videos to Ryan of me walking with and without poles. The first of many weekly updates. I have so much work ahead of me.

Saturday, it’s cooler, so I take myself outside to practice walking. My husband comes with me in case I face-plant because there’s no way I can get up by myself (yet. I hope it’s yet.) It feels so different, walking outside. Textured sidewalk, uneven blacktop. My left side feels so stiff. I am lopsided. I cannot seem to move in a functional manner. So much work. It’s a full week later, and it doesn’t seem very much improved. I spend about an hour walking up and down outside. 

I am finally brave enough to try putting my wrists through the straps on my poles and twisting them tight before gripping the handles. Both Ryan and Jared suggested this method to give my wrists more support. It seems very dangerous in the event of a fall, but it really does help my wrists and make me feel more stable. 

Inside, I put on my Leonard Bernstein playlist and practice for another hour. I have about a dozen steps of floor space from the front door to the table. Do a lap. Pause. Wiggle-dance. Lap. Pause. Wiggle-dance.

This week I discover that I can:

  • Stand up from a chair with no hands. I can do this without ExoSyms sometimes, if the chair is supportive enough and exactly the right height. It usually takes a few tries and is the result of momentum rather than actual ability. It still might take a couple tries with the ExoSyms, but they definitely give me a boost. When I discovered I could do it, I did it over and over and started laughing. Standing up is fun.
  • Stretch my hamstrings while standing. Usually, I stretch my hamstrings lying on my back with one leg in a yoga strap. I really dislike this position because it’s a strain on the rest of my body to pull my leg up. Sometimes, I do a modified downward dog instead, but it’s not as good a stretch. With my ExoSyms on, I can put my heel on the floor out in front of me and bend toward it, toes up. The brace keeps my ankle flexed, so the stretch is really good. So simple. I can stretch my hamstrings ten times a day now, if I want.