Disability Bucket: MS or Deconditioning?
Of the many drugs we would like to see, one that remyelinates the nerves (repairs the damage done by MS) may be getting closer and our bodies will improve, but will we be ready when that time comes? The goal of these drugs will be to restore function but we will have to build on what muscles we have retained while we are waiting for that time.
A while back I sat in on a telephone conference with Dr. Ben Thrower, Shepard MS Center, who was conducting a teleconference session for the Multiple Sclerosis Foundation (MSF). I really liked listening to him and would go out of my way to see him give a presentation in person or to be treated by him as a patient if I lived in the Atlanta area; Dr. Thrower had me when he said the role of the MS doctor is to be the guidance counselor because ultimately it is up to each of us to make our own decisions.
The information he presented was easy to understand in a manner that was not condescending and his explanation of new therapies on the horizon gave me more insight as to what to expect in the next few months. What caught my attention most, though, was his discussion on MS fatigue, physical therapy and deconditioning and the challenges of trying to stay in shape.
The big question comes down to are the physical limitations we experience due to our multiple sclerosis or is it from deconditioning? And how do we sort out the difference. On days when the fatigue is kicking butt, I do less. The days when I am spending hours on the computer writing, I move around less. On days when my mood is less than peppy, I am definitely less active. All of this ‘doing less’ allows the muscles to take the day off. After so many days of vacation, of not being asked to work to capacity, the muscles begin to function less well, or be deconditioned.
Do you participate in a wellness program? I know that question sounds strange in the context of living with a disease like multiple sclerosis, but wellness activities are recommended for everyone. I must confess I have really taken time off from any wellness activities, for a variety of reasons, and I can sense the deconditioning through every muscle in my body.
Dr. Thrower pointed out only 15% of the US population actively participates in any type of wellness activities and it would be easy to guess that the number of people with MS who exercise regularly is an even lower number. Remember, these don’t have to be aerobic classes or Zumba sessions and wellness comes in many forms. The challenge is to do something to improve our function now, and not be sitting and waiting until the cure comes along.
The good news in his message is although we can’t reverse the damage done by MS right now, there are ways to work toward reversing the deconditioning that almost all of us have experienced. He points out that most everyone is able to perform some type of physical therapy or wellness activity that may improve our physical wellbeing and help to strengthen us for the day when the cures for demyelination arrive.
My personal challenge is to set aside all of my reasons for not being engaged in wellness activities, particularly using the excuse that I have multiple sclerosis, and get back to making more effort. How about you? Most of us can use the help of a professional physical therapist to determine what might be in our own bucket of disability and whether it is MS or deconditioning and what ways we might engage for better wellness.
Wishing you well,
Does your employer provide workplace accommodations due to your MS?