Practical Parkinson’s

Alternative wheelchair user icon illustrates activity in disability
Image from The Accessible Icon Project

By Teresa Swartz Roberts

20. Copyright 2017

            When we went to our favorite Mexican restaurant for lunch today, I went to the bathroom right after ordering. Anybody who knows me well knows that I always go before a meal, before I leave the restaurant, and pretty much any time I pass a bathroom. I don’t like emergencies, so I avoid them. Since Parkinson’s interferes with communication between brain and body, it’s not always easy to hold it when I really need to go. I try to make sure that I never REALLY need to go. TMI? Probably.

            The disabled-accessible stall was locked, and there was a piece of notebook paper with “Out of service — mgt” scrawled in black Sharpie on the door. By then the launch sequence had been initiated, so I looked around for alternatives. The other toilets were not tiny, thank goodness. While I was going, I thought about how accommodations like high toilets make it possible for me to live a pretty normal life. I used the lock, which was a loop of wrought iron, to grab hold and pull myself up. And I decided to share some tips I’ve figured out to make life easier.

            If I’m visiting a friend, I can usually use a vanity, the side of a tub, or the edge of a privacy wall to steady myself. In a public bathroom, I can sometimes grab onto the bottom of the door and apply some pressure in order to stand. I always take my cane with me to a public restroom because it can become the means for standing. A walker is even better, although I haven’t had to use one since recovering from my knee replacement five years ago. If the stall is not too tiny, or if I’m comfortable opening the door, I can rock forward and get my hands and arms in front of me to change my center of gravity and get enough momentum to stand. When visiting a new place, I put a toilet seat extender in the trunk of my car. It’s an easy if sometimes embarrassing fix.

I stopped wearing pants with a fly after I had trouble getting the zipper down fast enough in the bathroom of a Chinese restaurant. Elastic is my friend.

            I stopped wearing pants with a fly after I had trouble getting the zipper down fast enough in the bathroom of a Chinese restaurant. Elastic is my friend. I buy pullover tops. If I wear a button-down shirt, I keep it mostly buttoned and slip it over my head. I wear two-piece bathing suits with built-in bra cups because they are easy to pull on and off. I’m still wearing tied shoes, but I know that Velcro is available when I’m ready for it. I use a bench to put on socks and shoes, and I stand to put them on at the pool, where the ledges and benches are too narrow for me to do all the spreading out I need to do in order to put on socks. A dress with a slip to put over my head and slip-on shoes are even easier than stretchy pants and sneakers.

            My house is mostly accessible. I say mostly because we’ll have to add a ramp when I transition to a wheelchair somewhere down the line. There are also parts of the house that may be harder to navigate on a walker or scooter than others. But I was blessed to find a one-level home on a level lot with a front door wide enough for a wheelchair and interior doors that could be widened. I was also blessed with a contractor who understood my needs and made suggestions that didn’t cost a lot–like removing the shower doors rather than replacing the whole shower. The shower heads can be removed from the wall to be hand held. And, of course, I have grab bars and a tall toilet.

            Several friends who work out at my local pool have talked about what they do to shave their legs. If you are a woman of a certain age, you might have trouble standing and contorting your body in order to shave. From shower stools to shaving cream, I’ve tried them all. At this point, I use an electric razor for most of the work. I can shave from the safety of my favorite chair.

            I have two chairs in my living room, both lift/recliner chairs. I was reluctant to buy the first one because of the cost, but then I shopped for plain old armchairs and realized that furniture just costs more than I had realized. At the time I was having enough trouble standing that I got stranded on the love seat a couple of times. Now, medicated and the beneficiary of physical therapy, I can usually stand up without the mechanism, but it’s nice to know it’s there. That’s why I bought the second chair from the person who used to live in my house.

            When I’m away from home, I have more to contend with than where to sit or where to pee. I can move almost anything with a dolly, but it’s not always practical to carry around. A folding luggage cart fits in a hatchback, trunk, or back seat. Add a couple of bungees, and I can roll five cases of bottled water. For messier loads, I add a plastic box or tote. I carried books and papers all over the campus where I taught in multiple buildings after injuring my knee a decade ago. The drawback is that the cart needs a certain amount of smoothness–limiting its use in snow, gravel, or up and down stairs.

            Thank goodness every place I shop now takes credit cards. Counting change requires nimble fingers and a change purse, and I don’t have either. Writing a check requires ID, remembering the checkbook, a pen, and the time and dexterity it takes to write the check and tear it out. Retail cashiers are grateful. I can request a receipt to see where the money is going when I’m ready to budget.

            I am usually not very comfortable with technology. I’m a late adopter, and I often take a while to learn how to use the gadgets I have. However, I use technology where it’s appropriate. I tell Google Maps where I want to go and wait for the electronic voice to give me directions. I intend to eventually embrace self-driving cars. Not that I’ll be able to afford one. But I like to imagine that I’ll be able to get around independently even after my Parkinson’s overtakes my muscle control. Even though my current car is 16 years old and sports the pock-marks of rust from a life lived on Maine roads, it has working cruise control to keep my speed constant without wearing out my flexed ankle. I don’t use cruise control every day, but it’s nice to know that it’s there when I need to drive a long way or in a confusing traffic situation.

            I leave myself notes on my phone. I have perpetual lists for the big-box stores we visit infrequently, and I’ve recorded measurements and brand names for some items. I don’t need to depend on my memory. That’s what lists are for. Speaking of lists, this one is long enough. Until next time.

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