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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,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • katrina
    3 years ago

    I am a Physical Therapist Assistant with MS (spinal cord only so far). I have battled trying to stay active and continue working. I had to cut my work hours to keep fatigue, weakness and spasticity under control. I believe we are losing muscle faster due to the MS and our inability to exercise like we used to is adding to our weakness. I use a restorator bike (5-20 mins is usually all i can do on better days) at home and try to go to an aqua zumba class and chair yoga when i can. These are the only exercises that i can do that help. Walking is a premium and must be conserved for work during the week or grocery shopping on the weekend. I believe weight training with limited reps would be helpful too, but budget and time (fatigue factor) are limiting factors. Also, many therapists are not well trained for treating MS patients. I tend to do my own therapy after relapses. The tools for measuring balance, speed, and gait are good for objective information but i have experienced both being provider and patient and have changed views on a few treatments many providers still do because of my own experience with MS. I wish there was more financial assistance so we could take better care of ourselves, but MS is an expensive disease/disorder to have and as long as i can manage work for income and even more importantly, medical insurance, I will. However, my quality of life suffers. I’ve been telling myself lately, “if i can do one more year.” (before cutting my hours again or quitting) I fear one day of being evicted or having to go live with a relative because i don’t qualify for disability (I can still make more than $720.a month) but one day won’t make enough to pay for a roof over my head and basic bills. So much money goes to research and not enough for MSers who just want a better quality of life and still want to contribute to society. I know this is off subject but wanted to put it out there. I had written an e-mail to the president of the MS Society, who forwarded it to a person who would get in touch with me and never did. The MS Society provides some educational information but their main focus appears to be raising money for MS research.

  • Christina Mattoni-Brashear moderator
    3 years ago

    Hi Katrina,

    You have a unique perspective as both a Physical Therapist Assistant and as someone with MS; thank you so much for sharing your experience and insights, and for being part of our community! You’re definitely not alone in your frustrations and concern for the future — I thought you might like these pages where others have shared their experiences:

    https://multiplesclerosis.net/living-with-ms/physical-therapy-mobility-strength-and-balance/

    https://multiplesclerosis.net/caregiver/my-role-as-physical-therapist/

    I also thought you might find these articles on financial resources helpful:

    https://multiplesclerosis.net/living-with-ms/financial-impact-and-helpful-resources/
    https://multiplesclerosis.net/living-with-ms/how-will-i-pay-for-my-ms-medications/

    Please stop by and let us know how things are going – we’re glad you found us!

    Take care,
    -Christina (Multiplesclerosis.net Team)

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