Thursday, November 19, 2009

My MS Story Chapter 18- Mobility aids, who needs 'em?

A day when you first incorporate a new mobility aid is a milestone day indeed, but not in the way you might think.

Sure, as my disease has progressed and my abilities have diminished, I’ve employed assistive devices that are more and more, well, assistive. So looking at the big picture, it would seem reasonable to say that the use of increasingly elaborate mobility aids correlates with increased disability, and that’s not a good thing, so mobility aids are a bad thing.
But this would be a mistake.  Although mobility aids are markers of disease progression, they are not causes. In fact, they are allies in the war I’m fighting. In every case, when I’ve first adopted a new mobility aid, I’ve thought something along the lines of, “This is really cool. I’ve needed help for so long. Why didn’t I get a (cane/crutch/scooter/wheelchair/sexy nurse) sooner?” These have all been happy days, like Christmas, or at least like Root Canal Appreciation Day.

The sad days have been those days when I realize that I can no longer do something that I’ve always done in the past, but that sadness has never been the fault of a mobility aid.

So rather than use a phrase like “Mitch is confined to a wheelchair,” it would be appropriate to say “Mitch is confined by MS,” or even “Mitch is liberated by his wheelchair.”

If you read my post on Judy the Physical Therapist, you may recall that when I visited her for the first time I was using a wooden cane to help with walking. One of the first things Judy did, in an act that I characterize as picking the low hanging fruit, was to grab a pair of demonstration forearm crutches, adjust them for my height, and let me try them out. Wow! What a difference.

These crutches were an improvement over the cane in two ways. Look again at the photo of my wooden cane, above. Notice that the connection to my arm exists only at my hand. This is not a very rigorous connection. It’s the weak point of the whole arrangement, kind of like that little piece attached to each leg on the underside of a folding table. If the piece is locked in position, then all is well. If you break that link though, the table leg folds, whether you want it to or not.

Now look at the photo below of the forearm crutches. They link up with my arm in two locations. My hand connects in a similar manner as with the wooden cane, but there's a second connection point further up on the forearm. So using even one forearm crutch is already much more stable than using a cane. The crutch feels like a natural extension of my arm.

The other improvement with the forearm crutches is obvious- there are two of them. Your body makes contact with the earth in not two places, not in three places, but in four places. Think about the stability of a bicycle, versus a tricycle, versus a car.

Another nice feature of the forearm crutches is that you can let go with your hands and the crutch doesn't fall to the ground, as depicted below. This frees up your hands for whatever activity you need them to do.

Quick aside:  How is a fulltime wheelchair user able to stand for these photos?  Well, because of the spasticity in my legs I am able to stand for a few seconds as long as I can hold on to something for stability.  I can’t move my legs (take a step) anymore, even with both crutches.  Spasticity is not all bad (just half bad). 

The same day that Judy introduced me to forearm crutches I went to a medical supply store and purchased a pair. Initially I would often use only a single crutch, to leave my other arm completely free, and, well, frankly to appear less disabled. A person using a single cane or crutch has some difficulty. A person using a pair of forearm crutches is a cripple, or so I thought. Over time though, I naturally gravitated toward the added stability that came with using two crutches instead of one. This migration was due both to overcoming my feelings of conspicuousness and to simply needing more support as my condition worsened.

After just a couple of weeks with the forearm crutches I realized that although they gave me a lot of added stability, they did not address the issue of fatigue. I still could not walk very far without my legs becoming too weak to continue. Luckily, I knew just the device I needed for those longer walks. I had rented one a year earlier when I toured Washington DC. It was time for an electric scooter.

I did my due diligence (as those of you who know me personally can imagine) and found the ideal electric scooter. Insurance paid for most of it. I also bought a portable ramp so that I could get the scooter in and out of my minivan. We removed the minivan’s middle seat for this purpose.

I also purchased an attachment for the back of the scooter so that I could carry my forearm crutches with me. I would use the scooter to get from point A to point B if these two points were sufficiently far apart, and then use my crutches at the destination. For the longest time though, I did not use the scooter in my house or at my place of work. I’ll write about those transitions in a later post.

If a cane implies some difficulty, and crutches shout out “cripple,” then what does a scooter say? How about old, miserable, frail, overweight, mentally challenged? These are not nice terms, I know, but actual connotations nonetheless. That’s why I always made an effort when driving my scooter to engage people that I encountered, to show them that I was none of these things. Well, I was a bit overweight.

For the next three years I was a crutches and scooter kind of guy. In May of 2005 I was using my crutches 95% of the time and my scooter 5% of the time. By July of 2008, just before I got my iBOT wheelchair, those percentages were reversed.


  1. Hi Mitch,

    Just wondering if the scooter you used to use is still manufactured? If so, what brand is it?
    Thanks, and Happy Thanksgiving.


  2. "If a cane implies some difficulty, and crutches should out 'cripple,' then what does a scooter say?"

    The semiotics of mobility aids - someone should write a thesis. I know that's why, in part, I cling to my manual wheelchair, because to me it means young, strong, athletic (as opposed specifically to either a walker or a power chair).

  3. Lynne,

    The scooter is called the Invacare Zoom 400. Nice unit. However, Invacare has discontinued it and won't even support it with parts. So it is gathering dust now in my garage for want of a part. It was my iBOT backup (which is also discontinued, but at least Johnson & Johnson is supporting it with parts and service for five years). For this reason I will avoid Invacare products going forward.

    Go ahead and e-mail me Lynne, and I'll be glad to help you evaluate the scooters that are available today.

    You may have noticed a manual wheelchair in the background of my scooter photo. That is now my iBOT backup. I can't push it very well myself, since my arms are now affected. Here's hoping for continued iBOT reliability for the next 4 years.

  4. Katja,

    If I was a shallow person I could make up a list of just how "uncool" certain devices are. The list would go from coolest to uncoolest, and would look something like this:

    cool manual wheelchairs
    power wheelchairs
    scooters like mine
    hospital style manual wheelchairs
    grocery store scooters

    But since I am highly evolved and generally empathetic, I would never publish such a list.

  5. Katja, I clung to my sexy manual wheelchair for way too long because, to me, it meant young, strong, athletic. Unfortunately, after a while, it also meant stationary. My power chair doesn't even make it onto the bottom of my own personal cool-o-meter, but I finally had to choose between being cool and being mobile. I still miss being cool, though.

    The coolest was my antique greyhound-head cane, even if all I can use it for these days is decoration.

  6. Hi, Mitch - just wanted you to know I am still following and really learning a lot from your blog. I was really impressed by your video of the ibot on the sand. Unhappily, I have temporarily joined the mobility aid group as I broke both my legs in October. So nInam non weight bearing for the time being, and in a wheelchair - manual - uncool probably but who cares, it sorks. Fortunately this is temporary and I canhear my bones knitting as I write.
    I am really liking and learning from your blog.

  7. Zoomdoggies,

    Thanks for dropping by. If your power chair doesn't make you cool maybe you need to wear gaudy jewelry or outlandish clothing :-)


    Great to hear from you. I'm glad you're still enjoying the blog. So sorry to hear about your two broken legs. Heal well...