Do I think about having muscular dystrophy every day?

The short answer is, “no.” The more complicated answer is “probably.”

I don’t think I consciously address the fact that I have muscular dystrophy on a regular basis, especially not every day. Even though I find myself transferring into a wheelchair first thing in the morning the conscious thought of “Oh that’s right I have muscular dystrophy” never crosses my mind.

I say that there’s a more complicated answer of “probably” only because it’s possible that I subconsciously address the issue every day or even every time I do something that might be difficult. But if I do this it’s only because it’s my brain telling my body I’m going to need to adjust to accomplish a particular task.

For my daily tasks, everything I do has become so streamlined that it’s like when you ride a bike and don’t have to think about riding a bike, you just do. Whether it’s my routine or my body movements, there’s very little conscious acknowledgement of why I am doing something a particular way. I just do it.

When should I give up on walking?

Walking is an advantage as a human because the world is set up for walkers. I walked until just past 30, when I decided that using a wheelchair would benefit me much more than what was left of my walking ability would give me. This is the quandary: At what point is it better to use a wheelchair than it is to keep walking?

I see people struggle to keep walking or set their hopes on walking again some time in the future. I must say that unless it’s a full-blown normal type of walking that includes being able to walk quickly, go up stairs, and not fall down often then I don’t really want to walk. When it was difficult, walking was a huge negative in my life.

First, doing anything involving walking became stressful. I didn’t want to get run into by a frenzied kid. I didn’t want to trip and fall in the middle of a parking lot. I didn’t want to have to explain to people that I wasn’t drunk when I got into my car to drive home.

Second, my walking was slow. I get extremely impatient when things are slow — slow walkers, slow drivers, slow lines. I was tired of taking an hour to go through a grocery store when it should have taken 20 minutes at most.

Third, walking limited what I could do by myself. I couldn’t really travel when my walking was bad. Getting around in a new city, much less in an airport was extremely difficult once walking became a challenge. Running errands, particularly to unfamiliar places where parking might have been limited became frustrating and inconvenient.

Most importantly, perhaps, walking became unsafe. Falls became more frequent and although I was never seriously injured I started to feel it was only a matter of time before something bad would happen.

Walking does have its advantages. If you can stand and walk, you can reach things that are higher up. You can maneuver up and down stairs. You can get into bathrooms with narrow doors. I am actually struggling to come up with any more examples, which is exactly my point about this article — our society is designed for walkers but I’m not convinced the advantages of walking are worth crying over once you’ve lost it.

There was a stretch of about five years when I could have benefitted from having a power wheelchair at my disposal but the thought never crossed my mind. Instead I let my limited walking ability keep me at home — rarely going outside or doing anything interesting. Going grocery shopping was the most exciting thing I could do at a moment’s notice because I could latch onto a shopping cart for balance. Aside from that, unless friends were going along or planning something, I usually stayed home.

All this time, I could still walk! A lot of good walking did me. It turned me into a hermit!

So that’s why when I see those news stories and Youtube videos about paralyzed people “walking” again with the help of an exoskeleton, I think to myself, “Meh…I’d rather have my wheelchair.” Not only to they have to strap the big honking thing on their legs, they only walk inches at a time and still have to use crutches to balance! What good is this if you can’t even carry something while you’re walking?

I do understand that these rudimentary “walking” devices are a step towards something better, but until then I’m fine using my wheelchair. These days I get in/out of the grocery store in ten minutes or less — faster than most people. And unlike most people, I can even sit while I am waiting in line.

I don’t regret starting to use a wheelchair full time even though I could probably have kept up some sort of walking for a time. Once I weighed the advantages over the disadvantages, it became an incredibly easy decision to give up on walking. And this is what I recommend: If using a wheelchair will make your life better overall, then use it.

Once you get used to it, you’ll discover that despite it’s drawbacks, using a wheelchair can have its advantages. I’ll write more about that in another post.

Strangers like to help

I have never been refused help by a stranger. Someday it might happen but that will only drop the percentage down to 99.99%. Whether it has been asking for help opening a door or reaching something from a high or low place, strangers are a big asset when out in the world.

I used to be afraid to ask strangers for help but this changed on day when I was out training with a friend of mine for an upcoming wheelchair tennis tournament. We were packing up and the hatch on the back of my minivan was not closing automatically like it was supposed to. We started trying to swing bungee cords up there to get the hooks to latch on so we could pull it down, but that was highly unsuccessful.

After several minutes of this two people going to play tennis walked by and my friend stopped them and said, “Hey could you help us pull down that hatch? It’s stuck.” Without hesitation one of the guys did it, made sure we didn’t need anything else, and was on his way with our gracious thanks.

What struck me about this incident was that my friend didn’t think twice about asking for help. At the time I might have tried several more times myself and hoped someone would see me struggling and offer help. People occasionally will offer if they see you struggling but it’s much more effective to ask strangers for help if you need it. You probably won’t be turned down and let’s face it, they probably feel better about themselves after they’ve helped you out.

Don’t rely on help, but know when to ask for it

I know more than a few people who rely on others to help them just way too often. This includes people with muscular dystrophy and even many able-bodied folks as well. I believe it’s really important not to rely on someone for every little thing otherwise you might never know what is possible and even might lose some of your abilities. However there are times when asking for help is either necessary or might save you a lot of time.

One thing I am known to do is rearrange my living space frequently. I usually do this without anybody’s help. How? I use my power chair to maneuver furniture — beds, couches, anything! It’s something like a logic challenge and it’s probably not the fastest way to do it, but I like it anyway. I recently rearranged my apartment and one of my friends couldn’t believe I did it myself. That was extremely satisfying.

But this philosophy extends to even smaller things like getting dressed or showering or grocery shopping or running errands. I like to do these things myself. It’s not that difficult and it’s probably good low impact exercise.

More importantly though I highly recommend doing any regular physical activities with as little help as possible. This includes getting up from chairs or getting out of bed. Until you are absolutely sure you are physically incapable of doing these things I suggest struggling to figure out a way to do it until you can struggle no more.

Several years ago I was nervous that I might not be able to get out of bed by myself anymore. The truth was that yes, the way I was doing it I wasn’t going to be able to do it much longer anymore. But after trying several new ways of positioning myself, using my arms and focusing on leverage, I discovered a brand new way of getting out of bed by myself. It was great. But had I never tried to figure out a new way, I might never have learned it. I might have started relying on someone else and that just adds a whole other layer to dealing with muscular dystrophy.

But there are times when you can benefit by asking for help. This includes times when your safety might be at risk. If it doesn’t feel like you will safely be able to do something — ask for help. Also, if asking someone to help you will save you a tremendous amount of time or prevent you from damaging your surroundings, then definitely ask for help. Lastly, if you have tried something yourself several times and see little chance of success on your own, then ask for help. But try as much as you can first.

Another thing you can do if you find you need help figuring out things like how to get up from bed or transfer more effectively is talk to someone trained as a physical therapist or ask your doctor to recommend someone knowledgeable in assistive therapy.

Everyone likes their independence and the only way to maintain this for as long as possible is to keep doing things as long as possible. But there is not one person in this world who doesn’t need help at some time. Remember that when you feel like you need assistance.

My first day using a power wheelchair

I didn’t start using a wheelchair until I was about 30. A the time I was still walking and the chair I was getting had a vertical seat lift that could lift me up so I could stand up more easily and still walk at home. Around the house I was walking fine. It was a comfortable environment. But when I was outside my house it was very difficult to get around with things like uneven terrain and steps. I had a manual chair that I would take with me outside the house but I always needed someone to help me and push me because if there was any sort of incline, I couldn’t push myself in the manual chair.

So I arranged to buy a demo power wheelchair at a discount with the help of vocational rehab and MDA and it was delivered to my house. Inside the house it was great — easy to move around and fun, like a video game. But I was scared to go outside. There was traffic and other people and dogs and dog poop. It seemed scary.

To get over this, I called one of my friends on the phone and I said, “Please ride along with me!” and I went outside my door. I rolled down the sidewalk to the street corner where the stop light was. My friend kept telling me there was nothing to worry about, and that helped. Finally I said goodbye to my friend and crossed the street.

Then I crossed the next street and the next and the next. Pretty soon I was at the grocery store and doing shopping. I was in and out in 15 minutes. I rolled back with 2 bags of groceries. I was there and back within an hour. I didn’t need anybody’s help and I didn’t worry once about falling or getting tired. It was great.

I can’t believe I was ever scared.