Category: Helpful Tips

Use a camera bag to hold your wallet, cell, & more

youshouldgoanyway

One of the first questions I had when I started using a wheelchair was “What the hell am I supposed to do with my wallet?”

I tried putting it in the front pocket of my pants, but that was uncomfortable and difficult to access. I tried putting it in the pocket of my wheelchair but I felt like it could easily fall out unnoticed. Then I had to also deal with a cell phone and it required a better solution anyway.

Thats when I tried a small camera bag — specifically the Lowepro Ridge 60. I know you can attach various bags and what-not to your wheelchair but I really didn’t want to have to dig underneath or behind every time I needed something.

So I picked up the camera bag after seeing it at a store and thought it might work. It was a great decision. I have had the same one for almost five years now and was recently looking to replace it with a new one — maybe a different one. But I decided that there was nothing about it that I didn’t like so I re-upped with a fresh version of the same model.

I love it for several reasons:

  1. It’s small enough not to get in the way but big enough to notice if you drop it.
  2. It holds a lot. I can get my wallet, phone, and either iPod or camera in there plus change, receipts, etc.
  3. It has two extra pockets — one small one that zips and one larger one that velcros shut.
  4. It’s inexpensive at around $12.
  5. It travels well — great for planes since you can keep it on your lap at takeoff.
  6. You can quickly throw change & receipts in it after checking out at the store.
  7. It fits nicely on your lap when used in conjunction with the leg strap I use.

The only negative is the occasional teasing by friends and family about my “purse” or “manbag” but the easy comeback is to say, “Well where the hell would YOU put all this crap if you were in a wheelchair?!?” They usually can’t come up with an answer. Then I say, “Well I can think of a place you can put it!”

If you’re struggling for a solution to how to deal with all the “stuff” when riding around in a wheelchair, I highly recommend the Lowepro Ridge 60 or any other small camera bag that you can find to use.

When kids ask questions about my disability

youshouldgoanyway

Kids can ask embarrassing questions. Having muscular dystrophy you start to get the questions about the same time you start to walk funny. I find it happens most often in the grocery store when the kids are strapped in cart with nothing better to do than look, point, and say, “Mommy, why does he get to use that car to go around the store?!?”

Naturally the mom is usually really embarrassed but personally I take no offense when a kid asks a question about something that is new or different to them. It’s natural. They don’t know the answer. Often the parents don’t even know the answers. It’s uncharted territory.

I am never offended, put off, or angry when a kid (or even an adult) asks me questions about my disability or muscular dystrophy. If you do get offended, get over it. You’re going to have to deal with it for a long time so you might as well educate people instead of make it seem like everyone with a disability has a chip on their shoulder.

Whenever a kid asks me a question about my disability, I take it to be a teachable moment for both the kids and the parents and it’s very easy to do and here’s how.

1. Smile.
This is so important because it puts everyone at ease and shows immediately that you are not offended by the question.

2. Put your answer in terms the kid will understand.
I usually just say, “Well my legs don’t work the right way so I have to use these wheels to get around instead of walking.”  Most of the time I don’t even get a follow-up question but sometimes you get a really inquisitive kid who just wants to know everything. Fortunately the parent usually tells the kid they have to go and the conversation ends there.

3. If the parent apologizes tell them it’s not a big deal.
This is the teachable moment for the parent. I think curiosity in kids is a great way for them to keep learning. I’d hate for the interaction to be an opportunity for the parent to inadvertently teach the kid it’s not okay to ask questions, when it is.

After a while of dealing with the questions you eventually get your stock answers. There are times when someone will ask something I’ve never been asked before but those times are much more rare now. So have fun answering the questions now that you now how!

Water is important

youshouldgoanyway
Fountain in Wellington, NZ

I recently had a bout with kidney stones. After it was all said and done my doctor said they were calcium stones and that it’s likely I developed them because my bones were shedding calcium and I was not drinking enough water. This is a reality for anyone who starts using a wheelchair but particularly for someone with muscular dystrophy. The bones just don’t need to support as much muscle (or weight) as they used to, so they give up the calcium.

Drink water!

Over the last few years I was definitely not drinking enough water. I was drinking coffee and tea — not to tremendous extent — but it would have been better for me to drink water instead. I know for sure I was not drinking 8 cups a day.

Since my kidney stone procedure (a long other story) I have finally figured out some ways to get myself to drink more water.

1. Drink through a straw.
For whatever reason my brain subconsciously must think that lifting a glass to my mouth is torturous. It is difficult, but really not an excuse to avoid drinking water. However I noticed that whenever I get a soda or iced coffee, I can suck down the entire drink much faster than if I was sipping from a cup.

2. Get a hydration pack.
I remembered seeing those helmets at sporting events with the cans and the long tubes attached to it and wondered if there was something a more refined — and there was. Hydration packs come in a variety of sizes and have a long tube you can keep sucking water out of. The only pain is that you have to clean this out a bit more thoroughly than a cup, but it can go with you anywhere. If you use a wheelchair you sort of have to jerry rig it to your chair but it can be a good way to stay hydrated.

3. Get a water cooler and put it somewhere you pass all the time.
Many years ago I had one of these right next to my desk and it was so easy to just reach over and fill it up. Mine had a cold and hot water button and although the 5 gallon tank was too much for me to lift, for $20 a month it was a great solution. You can even buy your own tank and then have the water delivered from a local water delivery company.

4. Keep track of how much you’re drinking.
I mentally try to add up all my water intake for the day. It becomes disappointing when I don’t get up to 64 oz. I actually aim for 80 so when I don’t even reach 64 it makes me run to the sink for one last water binge. Before I kept track of this I really had no idea how little I was probably drinking. There are days even when I keep track that it might be 5pm and I’ve only had 24 oz. of liquid — not good. But my body doesn’t scream for water like it does for food, so it’s important to stay on top of it.

5. Mix it up.
You can get sick of plain water really quickly. I have several different types of powdered mixes like Crystal Light that let me switch it up. There are boxes of single-serving mixes that you can get so you can carry them with you too. I also will allow myself to drink juice and even throw in a soda every now and then. You don’t have to give it up altogether.

If you drink enough water you can definitely keep kidney stones at bay. There are also many side benefits to drinking lots of water — losing weight for example, among other things. So do your best to stay hydrated — especially if you have muscular dytrophy.

How wheelchair tennis improved my function

youshouldgoanyway

I started playing wheelchair tennis in 2006 after seeing a photo of the amazing Nick Taylor playing in an electric wheelchair. I had no idea you could play competitive wheelchair sports in a power chair. I started playing tennis again, albeit from a chair now, and it changed my life.

When I first started playing, I had a hard time holding onto the racket when striking the ball. I couldn’t hit very far, or hard. I had trouble leaning over to pick up the tennis balls off the ground without pushing up off my knees to sit back up straight.

But after playing for several months, all of this changed. My body optimized itself and somehow everything got much easier. The biggest improvement came in my trunk muscles. I became able to lean over and pick up tennis balls easily and pop right back up to sitting up straight. This improvement translated to many other things like being able to roll over in bed more easily. Even when I am cleaning up my house or doing laundry I know that my trunk muscles are working better because of tennis.

I don’t know the exact reason this happened. There might have been some strength improvement but I think it’s more likely that a bunch of muscles I wasn’t really using decided to kick it into gear and help out. I think this is something it’s easy to forget about. Even if an individual muscle has weakness, your body can learn a new way to function such that other surrounding muscles help out. If you start adding muscles together to complete a task, it’s a lot more effective than just relying on one muscle.

This is why I encourage wheelchair sports and exercise to other people with Becker muscular dystrophy.  You can even play wheelchair tennis if you are still walking but have difficulty — you just use the chair to compete. You don’t have to overdo it to see improved function. You just have to do something long enough to allow your body to optimize itself and eventually make life easier.

Do I think about having muscular dystrophy every day?

youshouldgoanyway

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.