The Right Stuff
by Dean Kramer
July, 2008

There are two conflicting schools of thought when dealing with the need to adapt to having MS.

The first could be construed as the “Stiff Upper Lip” school of MS Adaptation. It requires that, no matter what or how severe your symptoms, you make every attempt to ignore them and carry on as if you didn’t have MS at all. 

Followers of this philosophy are loath to make concessions, feeling that any energy given to the disease gives it power over their lives. These are the last people to use a cane. These are the people who take medication only because their neurologists insist. They suck it up and push on through whatever their symptoms dare to impose upon them.

The second school is the “Whatever Works” school of MS Adaptation. In this frame of mind one uses anything available to get where one wants to be—mobility equipment, alternative therapies, various diets, exercise, and spiritual practices.

I’ve been enrolled in each of these schools at various times in my 24 years with MS and I have long since graduated from the first.  While my legs and lower back are often stiff, my upper lip is not.

Early in my experience of increasing disability I felt a great deal of pressure from both the MS community and my TAB friends to neither dwell upon nor wallow in my discomfort. That was fine but, as it turned out, one woman’s wallowing was another woman’s simple acknowledgement.

And the more I tried to disavow disability the more often I’d end up tired and, consequently, cranky. It took a great deal of energy to will my symptoms into submission. Anyway, it didn’t work as effectively as I wished it would since, even if I succeeded in hiding my disease from others, I was very much aware of it within my own body.

I became willing to try whatever might make my life less stressful and allow me more full participation in the activities I enjoyed. I think the first time I truly realized what I’d been missing was the day I first used a manual wheelchair instead of a walker or a cane on some day trip or other.

I’d become cane-shy after a fall caused by my floppy feet becoming entangled with the cane. At the time there was nothing more embarrassing to me than to go from strolling along with a jaunty swagger to lying on the floor trying to breathe again while people hovered anxiously.

I tried a walker but because my walking pace is very slow and stiff I invariably felt like one of those mega cruise ships trying to dock at a Caribbean island with a total square mileage (and population) less than that of the ship. As I walked I found myself humming the Volga Boat Song constantly under my breath (though sometimes I’d amuse myself and others by humming the William Tell Overture at three times the speed with which I walked).

Use of a manual wheelchair reawakened a feeling of grace within. I felt competent. I could keep up with, even pass, my companions. I had the same feeling using a scooter. Using a manual chair feels more athletic to me but there are times when a scooter is truly the best option.

This brings us to the point of this column; it’s important to have the right tool for the job, in so far as your finances and your insurance company can be made to provide such.

Last year I went on vacation to Cape Cod and stayed with a friend in a cottage on the bay. The paths were paved with crushed oyster shells except for the paths that were covered with sand and/or salt hay. I had my service dog with me and I couldn’t walk him myself at all. I didn’t have the strength to walk him using my walker and my manual wheelchair was useless on the available surfaces. I was totally dependent on the kindness of my friend.

In addition, when we went into the nearby town, though I could use my walker on the sidewalk I couldn’t negotiate the steps into all the little shops. My dog and I spent much time in the car waiting while my friend explored and shopped.

What a difference a year makes! I’m on much less medication for spasticity, thus I’m stronger and steadier on my feet. I’ve lost weight with diet and exercise. I’m taking supplements that have increased my energy.

This year I was able to heave the walker up steps and over barriers. I went shopping. I shoved that walker through crushed shells. I forced it through sand at the beach and through clumps of grass at the ponds.

As for walking the dog, this year in addition to the walker I brought an electric scooter with me. I was able to ride on all the surfaces surrounding our cottage. Trisket (my dog) and I took long, delightful strolls along the cove every morning and evening. 

I loved my time on the Cape last year, but this year my time there was perfection.

Mobility equipment comes in so many variations. There are all sorts of walkers, scooters, and wheelchairs, both powered and manual. Ideally a person with MS and it’s ever-changing intensity should have access to an array of mobility aids and the option of choosing the best tool for whatever current circumstance one faces.

There are many possibilities for those with limited resources. These include eBay, the NMSS (local chapters often have loaner equipment), Disabled Dealer Magazine, and sites such as Craig’s List and Wheelchair Junkie where reasonably priced used equipment may be found.

I am fortunate to have acquired something of an array but it took a lot of trial and even more error. Next month I’d like to describe some of my biggest mistakes as well as some of my mobility equipment victories hopefully saving someone else the agony of defeat.