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Old 01-09-2011, 06:10 AM   #1
Join Date: Mar 2009
Location: Silver Spring, MD
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Monnie45 HB User

Hi, I have myotonic dystrophy 2 and wonder what type of exercise is best for me to do. I appreciate that exercise in excess can be harmful. I do however want to keep whatever muscle strength I have.


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Old 01-09-2011, 10:53 AM   #2
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Re: exercise

The other day I almost posted this same question. Then I got sidetracked.

I have Limb-girdle and was wondering if anyone with an adult MD ever seriously gave daily exercise a try and if it was successful without doing harm. I sometimes lift dumbbells while watching TV but I admit I don't do it regularly. I am afraid that I'll break down muscle and not be able to replace it.

I do know that sitting in a chair for hours or a whole day sets me way back. I MUST get up and walk a bit (despite the fact that I don't feel like it) and stay active or I would really end up in bad shape fast.

The problem is that the dystrophy makes exercise VERY difficult or impossible. I can no longer lift my foot off the floor while sitting. How can you exercise your legs when they are 95% paralyzed?

Old 01-10-2011, 09:44 AM   #3
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Re: exercise

Hey Marlene and Mark,

I have the philosophy that the MD is going to make my life miserable no matter what I do. I have always been a very active person, and I decided that I have nothing so lose, so I attempt to work out every day. (I have not been as dilligent lately but I will get to that further down).

I started physical therapy in an indoor 93 degree heated pool in May of 2007, and in July of that year I also bought a recumbent exercise bike. Once my PT ran out I joined the "clinic" as a gym member, and decided to keep going to see what would happen if I exercised daily I had nothing to lose. It has now been nearly four years, and so far the MD has not progressed, actually quite the opposite. I used to have to use a chair lift to get into the pool (because of the way the stairs are set up, they 1.5 times taller than regular steps, I am fairly short, and the railings are to far apart), but I am now able to get into the water with the only assistance of one of the PT's arm as a railing. I have been able to not only increase the reps on my exercises, but I have also been able to add weights to my feet and increase the resistance on the dumbbells I use. In addition to that I have added cardio to my exercise routine in the water, and can "jog" for an hour and a half without fatiguing myself. At night I attempt to ride my bike for a while. I have achieved similar results there, when I bought the bike I could barely push the pedals at level one for five minutes, I had to use my hands to support. I can now go for an hour to an hour and a half at level four with no support. My entire medical team is impressed with what I have done. However, there is always a however, haven't you noticed? I think that most of my results are due to increased strength in the muscles that are not affected by the MD as I have not experienced as much of a progress on land as you would think. My PT friend says that is not true, and it may be because I want it all and I want it now.

OK returning to my comment about dilligency, it has been really cold here in North Florida lately, and even though the pool is heated and indoors, going there when it is cold outside just isn't nice as I get really cold getting to and from the car when going. In addition to that I have been fighting my stupid old depression again, and one of the things that happens when the chemicals in my brain decide to go haywire is that I lose all motivation to go there (or anywhere for that matter). I get tired of my friends there etc. So far I have not felt an decrease in my strength despite only goine about once every one of two weeks, but I know that if I don't get my motivation back soon, it will catch up with me.

My suggestion is that you look into whether or not there is a heated therapy pool in your area and check it out. It really is a good low impact way to get in a good workout.


Old 01-15-2011, 12:59 AM   #4
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Location: S.A.
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Re: exercise

I also have limb girdle md and your question regarding exercise and willingness to actually exercise some part of the anatomy is a question a lot of us ask ourselves.

For me exercise is when I get up in the morning getting myself into a sitting position. I’m sure the 2 muscles I have left in my stomach gets the cardio workout it deserves for that 15 min it takes me to get there.

I can still walk a little bit and there again the effort that it takes me to stay up must be an exercise for some part of my body.

Washing dishes and standing for the 10min doing so is a workout for my upper legs to keep on standing while doing so

I cannot use weights due to the fact it involves me bending down to pick them up is not a possibility so I let that go. (I prefer using the remote control for my TV instead)

South Africa, Cape Town had a heat wave a few weeks ago and regardless of me having a swimming pool, to get there walking on grass and uneven surfaces on my own and having to fall into the water instead of getting in slowly and of course the 100% possibility that I will definitely drown exempt me from water exercise unsupervised and with hands-on support

All jokes aside – exercise for any one of us comes in different ways and even walking to your car is some form of exercise than to sit the whole day stiffening your muscles

I have an electric recliner and every now and then I press the button to lift my legs
up and down just to circulate my bloodstream in my legs not to get that numb feeling when attempting to get back on my feet.

I’m only 38 and I’m sure that I still have a couple of years left to still walk. It really depends on each person individually how to manage our mind-set and what you feel you can manage in a form of exercise even if it takes washing dishes to do so.

The Following User Says Thank You to mandy37 For This Useful Post:
Monnie45 (01-15-2011)
Old 01-15-2011, 04:54 AM   #5
Join Date: Mar 2009
Location: Silver Spring, MD
Posts: 71
Monnie45 HB User
Re: exercise

Mandy, well, your sense of humor is still very strong. Thanks so very much for your post. I am fairly active at this point and hope to remain so.

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