Tag: shoes

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 Day 6: Shoes

danielleshanti

Saturday, 20 June.

If you are on an ExoSym journey, you will hear a lot of talk about the store Wide Shoes Only in Renton, WA, about thirty-six miles from the Hanger Clinic in Gig Harbor.

We were not about to add seventy-two miles round trip to our drive south to Oregon the day we left Gig Harbor. But the discomfort I was experiencing on the top of my right foot and the continued recommendations from Ryan convinced us we should go.

Of course, the store was closed because of COVID-19, but we left a message and the owner got back to us, scheduling an appointment for us at 10am Saturday.

We packed up and I suited up, and we arrived in Renton early. By then, I needed to use the bathroom, so we drove to a waterfront park and pulled up near a picnic area with public restrooms. I approached the dreaded ramp out of the parking lot with snail-like speed, realizing with alarm that I had practiced stairs during training, but we never got to inclines! Ryan had mentioned something about going sideways, so I tried that. Kind of. Eventually, I made it to the restrooms. Give yourself lots of extra time in the beginning to reach important destinations like these.

Here’s something I’m not wild about. I got into the stall, settled my poles against the wall so they wouldn’t fall over, got the door closed, situated self on toilet, peed, got up. Then I had to handle my poles again. BEFORE WASHING MY HANDS. There’s no way around it until I can walk short distances without poles. I suppose while the pandemic lasts, there won’t be that many public restrooms in my future anyway.

Back at Wide Shoes Only for our appointment, Dominic measured my feet with my ExoSyms on. This man is a shoe professional and he is enthusiastic about it. Ryan is the ExoSym inventor and expert, and Dominic is the ExoSyms-with-shoes expert. No other shoe salesperson will know anything about ExoSyms until you walk in with yours and teach them. So Dominic taught me how to buy–and wear–shoes with ExoSyms. 

First, Ryan doesn’t stock half-sizes at the Hanger Clinic, so do not take the shoes that Ryan provides for training week as the right shoes for you. It’s so important to be properly fitted; shoes that fit correctly make a difference in your ExoSym experience. It’s more than a little unfortunate that most of us are probably learning to walk (and work out) in ill-fitting shoes.

Second, the shoe shape (the “last”) is more important than the shoe size. Two different New Balance size 8s will feel different because they are different shapes. Pay attention to the model. Select a shoe with a roll bar for stability. 

Huh. Look at that. It says “roll bar” right on the shoe.

Without ExoSyms, I wear an eight, with a narrowish foot. It’s definitely easier to deal with shoes if you have two Exos and don’t have to split sizes. I also have two heel lift inserts that are the same height and will need to be worn with whatever footwear I’m choosing. Ryan put me in a 9 2E (left photo). Dominic put me in an 8.5 4E, the widest (right photo). Shoes that are too long will cause you to walk toes out and swing your leg around (think walking in flippers). I definitely do this, though I’m sure it’s not just because my shoes were a little big. Because of the lace guard that Ryan had given me for pain on the top of my right foot, Dominic showed me how to lace my right shoe completely differently. I had been wearing the 2Es with the laces as loose as they could be with barely enough left to tie. Dominic made sure I tapped my heel on the floor before tying my shoes very tightly at the ankle. A snug fit ensures that the brace doesn’t slip forward and backward in the shoe with each step. I was nervous it would be too tight and uncomfortable, but Dominic knows what he’s doing.

I hate shopping for shoes. If I find a pair I like, I’ve been known to buy two pairs so I don’t have to shop again for a while. I especially find it unbearable when the salesperson tries to help me put the new shoes on, bent over on their rolling seat with me trying to get my foot onto the slanted front. My foot goes stiff when it’s being wrangled into a shoe, so I usually say, “I’ll do it.” With Dominic and the ExoSym, my foot was already encased in the stiffest material imaginable, so it didn’t matter if it flexed involuntarily, and he had no problem getting shoes on and off for me. What a lovely, calm, unawkward experience it was to have the store to ourselves as well. 

I left with so much new knowledge and three pairs of shoes. I have New Balances for every day, a “casual” pair, and “dressy” pair. The latter two will probably last me many years because they won’t be worn very frequently. 

The takeaway: Do what you can to go to Wide Shoes Only and get fitted properly. It’s probably good to call so you can come in at a quieter time. Take what you learn home with you to your local stores. Leave room in your luggage for new shoes.

After he knows your size and your needs, you can also email Dominic about a shoe that you like the look of, and he will help you find a similar one that will work for you.

I’m so glad we took the extra time and miles to not only support a family business, but also to get me a good shoe education.