Before you buy your wheels

Ellen Riddle

Before you Buy your Wheels

Of interest to the first time mobility aid purchaser (scooter or powerchair). A polio survivor, now experiencing post polio, Ellen writes from her personal experience of purchasing and using both a scooter and powerchair. This article provides very informative, friendly advice. 

The only advice I give to anyone thinking of getting a chair or a scooter is to try to get their doctor to prescribe an ‘evaluation’ at a rehab facility by a Physiotherapist or an Occupational Therapist. The reason for this is based on my experience of having observed the unhappiness of too many who did all the research on their own and ended up with wheels that left them with other ‘unexpected’ problems.

I’ll use myself as an example. When I decided I was ready to take better care of my legs by getting my own wheels (I had been using store scooters) I couldn’t get a doctor to ‘agree’ that I needed a scooter so they would prescribe it for me. So I started looking for a used anything. My thinking was anything would be better than nothing. And, this is true, to a certain extent. I didn’t have a lot of funds to spend and finally someone on the Post Polio list helped me connect with someone selling a used scooter at a price I could manage. We met at a pps get together and I got my first set of wheels! The get together was at a huge hotel/casino complex in Reno. I was thrilled to be able to literally ‘run around’ it without getting so tired. I was thrilled. Then I got home and had to get a lift for my mini-van. I could only use the scooter around the neighborhood, not inside as it was too big for our tiny house. After searching I did make a lift choice and the scooter just made it inside my van. For months this worked just fine for me. I used it where ever I’d be walking more than fifteen minutes and where I’d end up standing. It was the perfect transition set of wheels for me. And, it was easier in that when you use a scooter and get up out of it people (strangers) don’t react as much. 

Anyway, too quickly, I began to experience fatigue in my right (good/strong/’invincible’) arm. This was the one I kept stretched out in front of me while maneuvering the scooter. So I began my quest for a powerchair.

I figured out a way to convince my doctor that I was really serious and ready for this move. I was really only thinking of my legs and taking better care of my right arm as it was letting me now know that it is far from ‘invincible’ and getting weaker. (a very scary thing for me as my left arm is already useless.)

I was thinking of a Jazzie (with the cool looking car seat…not a wheelchair type seat…less expensive… smaller…etc).

Well, first of all some folks I know started to email me privately and made suggestions. You want a ‘gel seat’ me, they said, you’ll thank me (I did and I’m sooo grateful). Another suggested adjustable arms since my left arm is so much shorter (bent it rests higher than my right) so I could give it good support too..hummmm hadn’t even thought of that.

Well, when my doctor was writing the prescription I told him to include those two things. He did, but he didn’t give me the script. He said that he had found that it was better (even though I seemed to know what I wanted/needed) to be evaluated by a pt first. He wrote a script for this at a rehab hospital 50 miles away from where I lived. He said this hospital was really good at evaluating the whole body to be sure each person gets the chair that works the best for them. Since I trust this doctor (miss him dearly since I moved) I went. Well this gal did the medicare/insurance part of the evaluation (another email) and then more. Since my original polio affected my left arm, neck and face, she had me bend and move testing my left side strength. Something I really hadn’t thought much about even though over the years I’ve had what I’ve always called ‘nothing pains’ in my left side (I called them this as when I mentioned these to doctors over the year they always said, “it’s nothing” and I choose to believe them). I ended up getting a Quickie with the wheelchair base for my seat, and swing away legs instead of the lift foot rest after she demonstrated how I would be endangering myself by not honestly lifting it every time I got in/out. Dang she was good. Saw right through me so to say. She also showed me just how weak my left side and back already are. And, besides the things I already had in the script she added a specially shaped back for both lower back and side support. She showed me how down the road I can add to this (a back with even more side support and /or side paddle like things that will support me when I start to lean more to the left. So far my daily stretching is preventing this, but I know it’ll happen somewhere down this road I’m on)…

I ended up with a totally different chair than I expected… I learned a lot about my own polio body that I didn’t know (or yet accept). I found out that I really NEEDED my chair more than I realized (accepted). Not just to conserve but hopefully keep my legs strong enough to stand on/walk enough to stay independent longer, but for my upper body. Hopefully keeping my breathing ok longer to keep the need for assistance here as far in the future as possible…something I had not even thought of when looking at wheels.

Now, if your upper body is still really strong… no signs of weakness at all, then a turnabout, a Jazzie, or a scooter are good. But, I highly recommend seeing a professional pt to get a complete evaluation of muscle strength. Evaluate possible problems over the next five year period. Then, you can make your decision based on where your body is now and may be headed during this time.

I am sooo grateful I did. My chair is almost two years old. It has become my preferred seat (well, my recliner comes in as fav in the evening for watching tv as I get the head support and my feet up high…ahhhh). But, I wasn’t ready yet for a reclining chair or the head rest two years ago. Another point, the pt ordered the base for this chair which will work for the reclining seat set up as she felt I will need it before the five years are up. But she also knew (through her experience getting chairs for folks) that going for that right away would be too big a step for me (she was so right) and worse, probably kick out my application. If my neck gets weaker where I know I need the neck rest this can be added. Same with the reclining seat, as my changing medical condition would warrant it.

Now, I’m not saying that everyone needs side and back support/ or adjustable arm rests. I’ve found I’m constantly changing mine depending on what I’m doing.. I keep them at one height when typing as it saves on my shoulders/back and neck, another height when running around stores and malls. Still another when just sitting and chatting with others, sometimes I just change the height as one gets uncomfortable….ahhhh that’s better!

If you have any doubts or questions get a PT at a rehab facility to help you make the decisions. These dealers of wc’s are out to make a buck. They want to sell you what they get the best deal on (ok not all of them, but too many of them are like this). They are not experts on fitting needs such as we can have with the right chair. They have made a big living selling to older folks who are simply having age related problems with walking mobility. And they have figured out the system to get medicare/insurance to pay for them. This is good…if all you need is to give your legs a rest. But really the step that many of us need help taking is that we need wheels for our WHOLE body. We need to preserve the bits that are still working good.

Just in the past few months I’ve heard directly and indirectly about too many of us who were doing ‘fine’ suddenly ‘blowing out arms’ or ‘good legs’. Literally having continued using the good bits (thinking they were taking care of them too, scary for me) until they just gave out on them.

It is so painfully difficult to accept (especially for those of us who really did pass for so many years ‘as perfectly ok’) that our whole body needs slowing down. That we have to learn to listen to the quiet whispers of complaint from our good bits before they no longer are much good at all.

gentle hugs,
Ellen Riddle

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