Today, I am starting a new series of articles: Mobility Aids and MS.
Mobility aids range from a simple cane to a custom-built power chair, but it is more than that. Anything that increases your ability to move safely is a mobility aid. This series of articles focuses on walking aids and wheelchairs. Also included are vehicles that help transport anyone in wheelchairs.
Why should we talk about mobility aids? Remember Merely Me's question asking about the worst symptom? Most of the answers concerned walking. The initial MS diagnosis is accompanied by questions, most frequently: "Will I be in a wheelchair?" and "When?" Kimberly Fabrizio explores that question right here on Health Central. Actually, only about 40% of people with MS use wheelchairs, but even more need some kind of mobility aid to get around.
In fact, the majority of people with MS say that trouble walking seriously affects their quality of life, but often they do not talk to their doctors about that possibility. About two thirds of MSers experience some trouble with balance or walking, and 94% of those say it disrupts their lives, some significantly. Yet, most still don't talk to their doctors. Mobility issues comprise and contribute to top problems in MS. If loss of mobility, or even just difficulty, cut so deeply into MSers' quality of life, why do so many people fail to seek out help?
MS is often a hidden condition, especially in the beginning. No one can tell by looking that you have a chronic disease. The decision to tell or not to tell, whether it be family and friends or employer and coworkers, is entirely up to you. However, when a mobility or walking device is used, there is no longer any question -- the secret is out and everyone knows something is definitely wrong. Just having MS and knowing it is a progressively debilitating disease is bad enough, but having to announce it to the world by using a cane is a different matter entirely.
As the legs begin to falter, it is easy for most people with MS to deny that walking may be a thing of the past, because the remitting period may be just around the corner. The need for a walking aid is easy to deny. It doesn't fit your self-image, you may be insecure and fear you are no longer attractive to your sweetheart, or you may never meet the right person. Sometimes it is just plain embarrassing.
My son David and I were at the mall, and we had separated to go to different stores. I remember walking with my packages to go back and meet him. I saw him about the same time he saw me, but suddenly I wasn't there anymore. With no warning I was on the ground, packages spread out around me, people avoiding me and other people trying to help me stand up again. How embarrassing. I didn't sway or stumble, I just dropped. David said it looked as if somebody had sprung a trap door.
My MS had been diagnosed a few years earlier, but I had no trouble walking before. Well, there was that time my knee was so numb I had to stop and sit down, but that lasted only a few days -- twice. Then there was the time I was walking with a friend, and he had to go get his car to pick me up. But I didn't admit to having problems walking, not me. Everything was fine -- until the day I fell in the mall. Then I started paying attention and noticed I held onto people's arms or walked close to walls, sometimes holding on, or compensated some other way because my balance was not steady. Surely there was a better answer. I finally went shopping for a cane, and my life became easier.
There are many reasons why a person with MS might hesitate to add an obvious sign that something is wrong. There is the sudden realization that MS is not a disease that you can ignore. The fear that life as you know it is over cannot be ignored. A cane is just a stepping stone to a wheelchair, and you are afraid that once you're in the wheelchair, there is a good chance you will never get out. I know people who have been walking with a cane for years. A wheelchair may not be part of their future. I know people who use a wheelchair only for long trips. I also know people who have used a wheelchair temporarily and returned to the upright world. MS is an individual condition.
The real question is: "How do you want to participate in life?" The difference between a limited lifestyle and an active life may hinge on a mobility aid.
This new series of articles will begin with walking aids such as canes, crutches, and walkers. Next will be a discussion of manual wheelchairs, scooters, and power chairs. Mobility does not end inside the home -- I'll be looking at the vehicles that transport people with mobility aids. I will talk not only about the options available, but also criteria for selecting the right one at the right time, and processes for acquiring them. Please let me know if there is something you would like added to this series.
Next I will talk about canes and walking aids, when and why to decide to get one, and how to select the one most useful for your problem.