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

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.

Cerebral Palsy Awareness Month 2024: Free Fitness for Those with Limited Mobility

This post has been brewing for months, so here it is, finally. It’s already March, 2024, and it’s Cerebral Palsy Awareness Month, so let’s pretend my timing was completely intentional.

In August and September last year, I was settling in to our new house and discovering new free (or low-cost) resources. I was doing my best to both stay active and keep my nervous system calm, even with the heat and chronic pain and fatigue and life. I’d found a few tools I was really grateful for and I wanted to share them. Then I fractured my shoulder and I stopped doing those new things. I’m not back to them all yet, but they are still good. Good for all brains and bodies, and available to anyone with internet access.

First, I looked up free meditation apps and tried some. Since my one-year membership to The Gupta Program ended, I missed all those meditation choices. YouTube has changed things, and my favorite meditations I saved there are now interrupted by ads. The free app I like best is the Insight Timer. There are loads of different guided meditations, and you can filter by topic or length or male or female voice. I always choose body scans or a yoga nidra.

The second amazing resource I found is the AARP. No kidding. I saw a FB advertisement for a free virtual exercise class, and I looked it up. Did you know you don’t have to be over fifty or a member to participate in AARP classes? They have loads and loads! And not just exercise classes, but cooking, and educational ones, and music and film ones. It’s called the AARP Virtual Community Center and it’s awesome! So often I am overwhelmed by everything that is awful in the world, and then I find something like this, and I think, sometimes, we do things right. Sometimes, we are amazing. Use the filter to find the ones you’re interested in. I’ve done chair fitness and qi gong, and I even tried laughter yoga. That was super….weird and fascinating. I can’t use my shoulder as an excuse anymore–though five months later it’s still not back to pre-fracture function–and I’ve got to get back into trying new things!

The third thing I discovered is not free. But it’s nearly free, so I’m including it. Over the years, physical therapists and doctors have suggested water therapy. There isn’t anything in my town, and the place in the next town over doesn’t take my insurance. So, I didn’t think it’s something I’d ever be able to try. Then I looked at my city recreation page. Again. There are a couple public pools attached to parks here, and there are classes like water aerobics. But I lived on the west side of town, and the pool with the aerobics was on the east side. Now I live on the east side, so I looked it up again. I saw on the “Aquatics” calendar that there was a water aerobics class twice a week. The cost per session? Four dollars. The location? A twenty-minute walk. So even though I positively deeply dislike taking off my clothes and putting on a bathing suit and putting on my shoes and walking to a pool and switching my shoes for water shoes (or else my toes will get torn up on the bottom of the pool), climbing into a pool and climbing out of a pool and being in a wet bathing suit and switching my shoes again but with wet feet, and walking home and taking off my shoes and taking off a wet bathing suit and putting on clothes, and then rinsing out my suit and hanging it up, I had to give it a try. And don’t get me started on having to pee. I pee before I leave the house. I pee when I get there. (I hate using a public restroom in a bathing suit.) Can I make it home before I pee again, or do I have to use a public restroom in a wet bathing suit? It was positively exhausting. But the 45 minutes that I was in the water? That was good. The participants are 98% senior citizens and they all chat and know each other and are friendly, and the instructor is enthusiastic and encouraging. 

For August and September on Tuesdays and Thursdays, I was someone who did water aerobics. “Hydrotherapy” for $8 a week. And it’s year-round! In a “heated” outside pool. I didn’t know if I was still going to make myself go at 8:30am when it got cold, but it was still hot on October 3rd as I lay on the kitchen floor with a fractured shoulder. I thought, well, maybe I can still go if I’m careful. And then I realized, no, that’s not going to happen. And I haven’t been back since. Sometimes I think, my shoulder is good enough for pool therapy now, and it would probably benefit from aerobics. But I just don’t wanna face the whole process again, but colder. Someday, not now. 

My point is though, that your town or city might also have super cheap classes that you don’t know about! Go on the official website and find recreation. My town also has an adaptive recreation program, and a really active senior center. I’ve never tried to take classes there, and they are a little pricier than water aerobics, but I’m pretty sure they’d let me in even though I’m not a senior yet. I also know that people who participate in community classes are generally awesome and would likely be happy to carpool if transit options are limited.

Because I didn’t want to leave you with only two free resources and one not-free, local one, I looked up a few more. Here they are, all together:

Insight Timer app

AARP Virtual Community Center . Filter by Category rather than Date and select “Exercise & Wellness.”

Adaptive Wellness through Disability Partnerships has a calendar of classes!

The Cerebral Palsy Research Network’s MENTOR Program is free.

The National Center on Health, Physical Activity, and Disability (NCHPAD) has a free fitness program that you can register for as well. They also have some interesting videos on things like fall prevention, and a directory of programs by state and country. I find the website confusing, but there’s lots there, so poke around!

Here’s my own playlist of inclusive workouts that I like on YouTube. I’m sure there are lots more. Use search terms like “chair fitness” or “seated workouts.”

Finally, I have updated my About Danielle page and my CP and Chronic Pain pages to reflect recent events. (The government finally agrees with me that I’m disabled! Again/still. Yay!)
Happy Women’s History Month and Cerebral Palsy Awareness Month to all the women with CP out there! If you want to read books that feature cerebral palsy, check out–and add to–my cerebral palsy book list on goodreads!