Category: Everyday Life

Laugh when someone forgets

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When you go from walking to using a wheelchair it’s easy for people to forget that you’ve made the transition, even as you’re sitting there right in front of them.

One summer while staying at my grandma’s house, I was planning a trip. We talked about how I might drive out to NYC instead of flying. Then I thought about taking the train and mentioned to her that it was only about a 15 hour train trip (or so).

“How on earth can you sit that long?” she asked.

I cocked my head, rolled my eyes, and within a few short seconds we both burst out laughing.

That’s how I like to approach the instances when people forget. Some people, however, take offense in situations like that and it’s not healthy and not acceptable. People slip up all the time. It doesn’t mean anything. Laugh, and let it go.

Make getting out of bed easier

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Standing up from bed can get difficult for several reasons. It’s easy to sink down when you’re sitting up, you can’t push off with much effectiveness, and sometimes your body just isn’t up and awake enough to power through the motion.

One solution is a bed hand rail, however sometimes they can get in the way when you are trying to get into bed or sit up. Another, much more expensive solution, is to get some sort of adjustable or motorized bed that can elevate a bit. If you are looking to get a new bed frame anyway, there are many styles of bed frames such as sleigh beds that can give you many extra inches right out of the box. If the frame is going to be screwed together you can also adjust it at construction time to boost the mattress platform higher.

I decided I didn’t want to spend the money on a new bed. So what I did was boost my bed onto cinder blocks so it was much higher. This made standing up from bed much easier. I simply bought enough blocks to fit under each of the supports and had some friends slide them in. Fortunately my bed frame did not have wheels so I didn’t have to deal with the bed rolling off the blocks. If your frame has wheels you will definitely want to get a different frame or have the wheels removed.

The only issue with having a higher bed is that getting into bed becomes more difficult. This can be remedied by using a small step stool if you need to get an extra few inches. I decided, however, that trading off the extra effort getting into bed was worth being able to get out of bed more easily. After all, in the morning I need all the help I can get to wake up and get going!

Bleacher stress

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Bleachers were my nemesis in high school. Since I had difficult with steps and didn’t want to feel like I was being stared at, I never went to football and basketball games. I couldn’t climb up the bleachers easily and without stress. School assemblies were particularly annoying because everyone HAD to go. I couldn’t exactly roam the halls when I was supposed to be in the gym with everyone else.

One solution would have been to sit in the front row. Can anybody say, “Loser?!” At least that’s how I felt. But the front row seats were also not very high off the ground and I was having a hard time getting up from chairs without grabbing onto something else, so that was out.

Our gym, however, had an upper level and I noticed some of the teachers and counselors would go up there and stand along the railing during the assembly. There were at least twenty steps to get up there, but twenty steps in an empty, quiet stairwell were much less imposing that 20 steps in front of a crowd, with no railing.

So I asked my guidance counselor, Mr. Foote, if I could watch assemblies from up in the upper level. He said it wasn’t a problem and for the first few times even climbed up there with me. Finally it became a routine and the other teachers knew it was okay for me to be there so I would just go right up there by myself. The beauty of this vantage point was that most of the time none of the other students even noticed I was up there, or cared.

In college, however, I got a little more excited about wanting to go to the sporting events because the quality of athletics at Stanford was amazing, and mostly free. In this case I simply did what I did in high school — scoped out the best spots and got there early to make sure I could claim my space. In some cases it was a standing balcony, in others it was a second or third row bleacher seat where the side of the bleachers were exposed so I could just slide in and out without having to climb steps. There were few times that I didn’t get a spot that I wanted, but then I would just look for another place.

Of course all this changed when I started using a wheelchair. Now there are usually designated spaces for wheelchairs and this removes the stress about worrying where to sit. This does come with its own set of problems, however, which I will discuss in tomorrow’s post. But my point is that most of the time, despite my difficulty with bleachers I was still able to find a vantage point, I just had to look around and think about it. This seems to be the case with most things that I can’t do like I used to. Necessity is the mother of invention, after all.

Making seating transfers easier

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Because arm strength can decrease with muscular dystrophy, I find a lot of the transfer tips I’ve gotten over the years to be useless. I cannot push down with my arms to boost my butt up at all, so I’m stuck “oompfhing” and sliding my way to wherever I want to transfer.

Often the difficulty with sliding from seat to seat is the friction caused between various fabrics. For example, it’s nearly impossible for me to wear corduroy pants and slide to the driver’s seat of my van because the seat fabric and the corduroy start an endless battle.

One solution to this problem is leather seats which is why I got a leather couch in my house instead of a fabric one. I can transfer and slide easily even with corduroy on. Alternately you can make use of a transfer board if necessary. However I find a transfer board only useful if I have to span a wide gap. It’s too cumbersome to use for any quick transfer.

My favorite solution, however, is to use a slippery piece of fabric as a temporary seat cover. (I recommend black because dirt doesn’t show!) I figured this out when I was having trouble getting in and out of my van while still walking. I could plop down just fine, but rotating my body to get comfortably positioned was a big pain in the butt. So I got a few yards of synthetic, running-pants type of fabric and laid it out on my driver’s seat. Sliding into a proper position became so much easier it was great. A benefit of using this sort of fabric is that you can also take it with you when you travel, or even fold it up and have it with you wherever you go. For example, if you go to someone’s house and they have a comfy looking recliner, you can just whip out your slippery fabric and slide onto the chair easily.

In a pinch I have also used plastic trash bags to provide a similar type of experience. Often though they’re not big enough to be completely effective and don’t survive too many transfers, but you can still make good use of them in a one-off situation.

Why I don’t use footrests on my wheelchair

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For the last three years or so, I have not used footrests on my wheelchair during regular daily use. I still put them on when I am playing tennis or traveling, but I have found that the ability to use my feet and legs to help open doors and assist with transfers has been a great benefit. It took some getting used to, and requires vigilance when rolling about, however once I rolled over my feet a couple times, I started paying better attention. Keep in mind, I don’t recommend this method to everyone, I just thought I’d share it because it works for me. If you try it you are going to hurt yourself at some point.

One reason I can get away with this is that my wheelchair has a power tilt so I usually tilt it up a few inches to lift high my feet high enough off the ground to be somewhat safe. I still have to be careful not to let my toes tip down and catch on something like a break in the sidewalk or the ramp on a curb cut. There is also risk of catching my foot on something if I approach too closely on the side as well as the risk of my heel getting caught up in a wheel. Fortunately I have only had two incidents resulting in what amounts to an ankle sprain over the last three years that I have been doing this.

Opening Doors

When it comes to opening doors, I don’t find ramming a glass door with foot metal footplates to be particularly effective or safe. However when I have my legs free I can use my feet to gently push open the door, move forward, then use my arm to hold the door open as I guide myself out.

If it’s a pull door, I am able to open it slightly with my arms, then stick my foot in and use my leg to swing the door open, leveraging my power wheelchair as well. For me it’s much less challenging to do this,  than it is to try to swing the door open with my arm and jam my wheelchair in through the temporary opening before the door closes too far.

Transferring

When transferring to or from my wheelchair with the footrests attached, it’s cumbersome trying to get my legs over the footrest. It can also be difficult to get the chair close enough to transfer if the footrest is simply swung away. So I found myself removing and reattaching the footrest every time I would transfer.  When I am out and about this doesn’t happen too often, but at home it could be easy to transfer several times a day just with having to use the bathroom, or sit on regular chairs. I soon found myself not even bothering to attach my footrests around the house and it made things a bit easier for me.

Drawbacks

I mentioned before that I have run over my feet a couple times, and it is painful! It feels like a bad ankle sprain. Each time this has happened it’s not that the wheel ran my foot over, it’s that my whole foot turned under the frame of the chair. Essentially it’s as if you pointed your foot down and it kept bending until it’s pointing the other direction. The worst part is that then you have to back up your wheelchair to get your foot out — so it’s like running it over twice! This is why I don’t recommend doing this. It hurts! Don’t count me liable if you try this and get hurt! It’s a personal choice. For me, the benefits outweigh the risks at this point in time.