Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 05-09-2011, 04:13 PM #11
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He did suggest the bike, which I thought was very silly. An exercise bike targets specific muscles, which is exactly what I need to avoid. It makes more sense to me to aim for exercise that uses a little of one muscle, and then a little of another, so as not to sustain the stress on any one muscle. Good exercise for me is walking around the block (never alone), and this summer I will swim (but not in water over my head!). I think swimming must be especially good, because it's so gentle, and it's easy to rest while you're doing it, and because it allows you to stretch. Also, the coldness of the lake water is good for myasthenia.

Abby
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Old 05-10-2011, 12:26 AM #12
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Quote:
It makes more sense to me to aim for exercise that uses a little of one muscle, and then a little of another, so as not to sustain the stress on any one muscle
perfectly correct. This type of exercise may or may not improve your muscle strength (depending on the severity of your illness and how much stress your muscles can sustain), but not less important it will help you learn how to plan your movements so that you can do what you want much better.

It may be a good idea also to work with someone and not do it on your own.
I had an excellent teacher. for more then a year, in twice weekly sessions, we meticulously learned each and every one of my muscle groups. (she used a system called movement notations, which was originally structured for choreography, but is excellent to document any type of movement).

I learned to use my muscles in such a way, that I had significant improvement in my functional level, despite gradual worsening of my illness.
(that I stupidly ignored, being reassured by my neurologist at that time, despite the concerns of my pulmonologist, but that's another story).
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Old 05-10-2011, 10:45 AM #13
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My old dr, dr. Juel suggested that biking and swimming are two of the best exercises for mg because they are not concentrated. I don't agree w biking..if I did that my right leg would be dead within 2 mins.

I also agree that doing things such as these are essential to the well being of ones mental status and even though they may have negative repercussions for a day or so, doing them can greatly help the negative attitude change to a positive one.
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Old 05-11-2011, 04:43 PM #14
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Thank you for the mothers day message to the moms here like me. On mohters day I was working really hard to not have the ultimate melt down because in the morn I woke in a new kind of scary place. I get POTS symtpoms at times as I have mentioned that also can make me even weaker and make my chest ache and such. WEll had it in spades that day and it was alot worse and all that I usally do didnt work so I called my oldest to say I needed to go for fluids then not Monday. She didnt yell at me badly but she said that she needed a days notice and her voice sounded so burned out. She said call my other daughter. I said that she would say no. We both know this. AT the end of the day during which neither gril took me for fluids which I cried off and on about I did get some more words with oldest one and .......well lets just say I get what you are saying Tyson. My youngest is too scared and the oldest is pure burned out.

Monday I called my DHS workers supervisor as I was advised to do to ask for another worker. That supervisor yelled at me and said why didnt you call back your new agency....."heh lady I cant breath!!!!!" She was not nice or understanding and finally said your worker cant do anything more for you as the case load is too big. WOW! I said I just need another body to help. She said hire one. Good grief. She said go to Aging Services they have a cap on case load tho Aging Services told me that my DHS caseworker should be doing what I need. And so the circle goes..............

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Thanks for backin me up here glad you got some stuf done
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Old 05-11-2011, 08:54 PM #15
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Alice, what does your pulmo expect or want around expercise and activity?

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Originally Posted by alice md View Post
I learned to use my muscles in such a way, that I had significant improvement in my functional level, despite gradual worsening of my illness.
(that I stupidly ignored, being reassured by my neurologist at that time, despite the concerns of my pulmonologist, but that's another story).
was gonna take this out and make separate thread but today that is beyond me.

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Old 05-11-2011, 09:05 PM #16
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When I am cold I can do amazing things. My body is totally different under the right circumstances with cold. On 12/1 it was about 45 degrees here and it was very sunny and I set out to walk a bit and that bit turned into at least 2 blocks, More I think. But that is a miracle for me. Being so deconditioned which I have gotten as the total reason for my weakness at times, this truly surprised me and vindicated me in what I knw about my body. I noticed from my calendar that has health issues on it that I had stopped tanning much if at all for about 2 months. The tannin gets me too hot no matter what I do and that is a drag on my general strength.

A cool lake to swim in sounds good. I am a walker esp in a park. I rehabbed myself that way after the low vit D was found. Human body is amazing and a puzzle. A difficlut puzzle this week.

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