Sometimes when dealing with a physical disorder there are things we adapt to automatically like the way we eat or the way we get dressed. I have personally managed to adapt in several ways, several different times during the progression of my muscular dystrophy. You probably have too.
There have also been instances when I struggled with something more than necessary. This was partly due to pride but in many cases it was that I simply didn’t know what tools were out there to help me.
In reflection I came up with eight different problems I encountered and the solutions I wish I’d discovered sooner. These solutions have helped me maintain my independence, safety and health.
Picking things up off the floor
I loved playing ping pong in college to take a break from studying. But picking up the ball off the floor was virtually impossible for me. I’d have to kick the ball to my opponent, and they’d pick it up. In this case, a portable reacher would have come in handy tremendously. Nowadays, it’s something I can’t live without for everything from cleaning to doing laundry to pulling tickets from parking garage machines.
Putting on my own socks and shoes
As my legs got tighter it became more difficult to cross my legs such that I could put my socks on with ease. It wasn’t until recently that I picked up a sock aid to help me quickly slide on my socks. Pairing this device with an extra long shoe horn, I get my socks and shoes on several times faster than when I struggled on my own. When I can get away with it, I also use slide-on shoes or slippers.
Getting into/out of vehicles
While I was briefly using a manual wheelchair I struggled to get into and out of cars. Jumping the gap with my butt was difficult because my arm strength was weak too. Finally I picked up a transfer board, and this task became tremendously easy. I also started wearing pants made out of material that was more “slippery” to assist with the sliding. Nowadays, I drive my wheelchair into my van and transfer to a regular driver’s seat. The seat is covered with slide friendly fabric as well so I can get comfortable in no time. My best suggestion for this is to go to any fabric store and feel the materials to judge what will work best for you.
Getting into people’s houses with my wheelchair
When I first started using a wheelchair one issue was how I would get into the homes of my friends and family. At first, everyone was creating their own makeshift ramps. At one aunt and uncle’s house, we actually used the seat board form their old picnic table as a ramp. I finally decided this was stupid and unsafe and picked up a 7-foot tri-fold wheelchair ramp that I carry in the back of my van. It fits perfectly and works at the majority of the places I need to go. This saves everyone, including myself, a lot of headache worrying about how I’m going to get in and out of their homes.
Losing my pants when transferring
I noticed that because of the way I was transferring, my pants were sliding down often. This also happens when I am lifted into/out of plane seats. Once I mooned an entire flight crew because my pants got stuck when I was being lifted! Finally, I started wearing suspenders and the problem was solved. I got a pair of suspenders with strong metal teeth on them, and I haven’t had any embarrassing experiences since. Although I’m not a huge fan of how suspenders look, I did start wearing them under my shirts without any problems. I also will wear them over an undershirt but under my top shirt as well.
Feeling unsafe in the shower
When my balance became precarious, I got nervous while showering. Part of my stress came from getting in and out of the shower, but I was also worried about falling while taking a shower. My first solution was heavy-duty grab bars. I even had my dad put in a super-strong, wall-mounted curtain rod so I could grab onto that too. (Do NOT grab onto shower rods that are not built specifically for grabbing because they will not hold you!) Once I started using a wheelchair I began using a portable shower chair I could transfer to with ease. I would also take the chair with me on road trips just in case I went somewhere without an accessible shower.
Keeping my legs together and getting my legs into bed
This started to be a problem around the same time I began using a wheelchair. My legs always want to push outward when I am seated. This was causing discomfort and my knees were always rubbing against my leg rests. One solution to this is get padding or knee guards on your wheelchair, but that can be expensive. My cheap solution was to get a Velcro weight belt that I tighten around my lap to keep my knees together. It works great. This belt serves a dual purpose, however, in that I can use it to pull my legs up into bed at night too!
I always seem to be cold when others are comfortable or too hot. Dressing more warmly seems like an obvious solution, but for me, dressing with more layers makes me heavier and therefore less mobile. So I looked for heated clothing . Recently, I purchased a heated vest that runs off a rechargeable battery that sits in your pocket. So far I love it! When in my house, I also use a couple different portable space heaters to keep the areas I am in warmer than the rest of the house. Then, I’m happy and others don’t get too hot.
Nowadays when I notice something becoming difficult for me, I make a mental note of it and keep my eyes open for a solution to make it easier for me. There are a few great ways to research ideas:
- Type in your problem directly into Google. It might just find you a page that talks about your specific issue.
- Post your question to an active disability message board.
- Don’t be afraid to contact people who have blogs or who have posted online about their disorder. They obviously want to share their story and could help.
- Talk to other people you know who share your disorder. Even if they don’t specifically have the same challenge you do, they might have ideas or know someone who would.
Lastly, keep in mind that using an assistive device is nothing to be ashamed of. It’s the safe thing to do, and can make your life more productive and keep you independent for a long time. Often times, the solutions are low-cost and simple. You’ll find yourself asking, “Why didn’t I do this sooner?” like I have many times already.