Exercising and getting healthy w/ disability

Basilin

Hi there,

I was diagnosed with a rare muscle disease when I was a kid called central core disease that causes skeletal muscle weakness. I was told that I shouldn't exercise or over exert myself very much because the effects of moderate-heavy exercise aren't understood very well in people with this condition. My weakness attracted a lot of ridicule growing up and made me very self conscious about my physical abilities. I don't like people seeing me do simple things like run or go up stairs, and I avoid physical activities because of it.

However because I've avoided exercising and haven't eaten very well, I became overweight. I lost most of it again through fasting, and I think my heart is out of shape because I am very sedentary and get out of breath easy. I'm trying to figure out how to start exercising at a safe level and go about being healthy with cardio and diet, so I'm hoping MFP will help with that.

Is there anyone else out there with unusual disabilities they are working around as they try to get healthy?

fluffyasacat

I don't have a disability but I applaud your efforts to take control of your health and the bravery to take on exercise. Being overweight is a self-imposed disability which most people can control, given the right tools and support.

What sort of exercise do you plan to do?

CynthiaT60

Wouldn't it be better to ask specific questions at your doctor's or physical therapists? And there are a lot of physical therapists specialized in sports.

Good luck!

Basilin

Thank you fluffyasacat, that was really kind to hear!

I'm following recommendations of low-impact cardio, stretching/balance exercise and avoiding weight lifting or strength training. I do want to try running.

Cynthia, thanks for the luck! Unfortunately this is rare/little studied disease so there aren't many doctors or physical therapists that can help. I don't have a severe enough case to require special therapy (I get around ok). There is a lot of variation, and doctors sometimes have completely opposite opinions about it:

"In the case of central core disease, the potential negative effects of exercise aren't as clear-cut. Some doctors worry that because excess calcium in the muscle cell may be a problem for people with CCD, anything more than mild exercise should be avoided because muscle contraction requires calcium release in the muscle cells.
At the same time, some researchers speculate that exercise may actually stimulate the muscle cells to develop better strategies for removing the extra calcium that leaks into the main part of the cell." http://quest.mda.org/article/coping-central-core-disease

From what I can find, this hasn't been studied much since the late 90's. So I'm kind of on my own.

I'm learning a lot reading on this forum. I think I'm already getting a better grasp of how to create an exercise plan, and my first goal is to start tracking what I eat.

fluffyasacat

Please take the following with a hefty groan and an eye-roll if you must.

Have your doctors suggested taking dantrolene as a calcium release inhibitor? I'm a complete armchair scientist working with google rather than any actual education in the field here but it would seem that if you can control the calcium release for the period of the workout you might be able to get through without the damage and ill-effects.

ETA: dantrolene seems to have its own list of potentially carcinogenic side effects.

GertrudeHorse

Starting with something gentle like yoga or pilates could be good for establishing some strength in very weak muscles. Alternatively hydrotherapy might be beneficial. Even if you don't get a physiotherapist who knows much about your specific condition, it could be good to work with someone who knows about exercising with disabilities in general. Good luck!

Galatea_Stone

Because your disease is so rare, I think it may be harmful to give you advice. Honestly, the only advice I feel comfortable giving you is to try to seek out a specialist, whether through letters or for consult.

Basilin

Please take the following with a hefty groan and an eye-roll if you must.

Have your doctors suggested taking dantrolene as a calcium release inhibitor? I'm a complete armchair scientist working with google rather than any actual education in the field here but it would seem that if you can control the calcium release for the period of the workout you might be able to get through without the damage and ill-effects.

ETA: dantrolene seems to have its own list of potentially carcinogenic side effects.

Interesting! I will look into it out of curiosity. Thanks for the suggestion.

I am very caffeine sensitive (if I have 2 shots of espresso, I am so fatigued the next day I feel like I was hit by a truck!), and only recently realized that caffeine triggers calcium release in muscles... yet in low doses (65 mg), it can actually improve my ability to do things like go up stairs without using a lot of support. The genetic mutation that causes this disorder can result in a variety of changes to how the calcium release occurs, so you can get people with serious problems who can't walk or have spinal problems, or you can get people that are barely affected, and then everything in between.

Starting with something gentle like yoga or pilates could be good for establishing some strength in very weak muscles. Alternatively hydrotherapy might be beneficial. Even if you don't get a physiotherapist who knows much about your specific condition, it could be good to work with someone who knows about exercising with disabilities in general. Good luck!

Thank you for this advice! Yoga sounds like a great idea. I love swimming, too.

Because your disease is so rare, I think it may be harmful to give you advice. Honestly, the only advice I feel comfortable giving you is to try to seek out a specialist, whether through letters or for consult.

No advice required. I am curious if anyone else is struggling with muscle weakness or other disabilities that might make exercise harder. I am reading some people's stories like this in other threads, though.

Thanks everyone for your comments/interest!

Faye369

Hello Baselin .. I have Facioscapularhumoral Muscular Dsystrophy - FSH .. it is one of the most common forms of muscular dystrophy but oddly enough it's the one that the majority of people have never heard of. FSH causes progressive atrophy of the muscles in the face, shoulders and larger trunk ... no two cases are the same... The upside of this disease is that because the facial muscles are weak, it acts as a natural botox in that I have no wrinkles .. people guess me as being low to mid 40's when I will be 54 in November.

I mostly eat healthy foods and lots of fruits and vegetables but have an office job and do not get the exercise I should .. and it gets easier and easier to not do anything... but

Last November, in contemplation of surgery that would enable me to raise my arm overhead, I started going to a local gym. I do not look overweight even though I weigh over 200 lbs .. people often guess me at 165 - 170 so I feel like people are judging me when they see I am only able to walk on the treadmill at a slow pace. I also do not "look" disabled so also feel the same when they see I can only life 10 lbs .... so trust me when I say that I can totally relate to how you feel about doing "normal" things in front of people. My life has been affected by FSH with the progressive inability to raise my arms over my head - thus that I now have to sit in a chair with my elbows on a table to use a hair dryer Another daily issue is 'drop foot' that makes walking upstairs tricky because I often trip. The running joke at work is to watch I don't trip over the tile lines on the floor.

Since November my stamina has increased and I am feeling better .. I am trying not to dwell on the weight but try instead for the "feel good factor" and although I've only lost 20 lbs I am feeling better. I just started the Whole30 meal plan to change things up a bit. I am on day 4 only and so far things are going well but have to take it one day at a time.

kpk54

Checking in on rare disorders. I have Cervical Dystonia aka Spasmodic Torticollis. Due to involuntary sustained contractions in my left sternocleoimastoid, right splenius capitis and right trapezoid my head is turned right and (chin) upward. On bad days my head is rotated about 75° to the right and I look at the sky. To see something to the left I turn my entire body because my head is "locked" right. Nevertheless at 60 years of age I became bound and determined to lose my excess weight and have done so. On "bad" days I use my stationary recumbent bike. On good days I walk fast paced or do aerobics. I just have to be careful because not only is my balance off, so too is my kinesthetic perception. I walk into walls , stumble on sidewalk cracks I didn't see etc

It's no fun and quite embarrassing but I can smile about it. KathyK

ETA: Just looked at my post and noted my picture. Yep that's me...constantly sitting to everyone's left because i'm locked to the right.