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Looking for advise on excercise and diet

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Old 07-31-2012, 11:12 AM   #11
kristy
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Quote:
Originally Posted by teresakoch View Post
I may upset some people here, but FWIW, I get REALLY upset with doctors who "recommend" exercise for patients with MG - it tells me that they truly don't get it. Our problem isn't that our muscles aren't "strong" enough - our problem is that the receptors that take in the chemicals that make our muscles work have atrophied.

All the exercise in the world is not going to change that.

For people with MG, exercise can - quite literally - KILL THEM.

If we exercise, we are requiring our muscles to use up all of the "juice" in them. Since our receptors are unable to pull in ACh at the same rate as everyone else, once our muscles have used up the ACh that is there, that is it - our muscles shut down and we collapse.

The frightening part is that one set of those muscles is the group that allows our lungs to expand and contract. If all of the ACh in our system is used up, those lung muscles CEASE TO FUNCTION. If our lungs can't expand and contract, oxygen cannot get to our brain and WE WILL DIE.

The only way to save someone with MG whose lung muscles quit working is mechanical ventilation.

It is vitally important that our doctors understand this - I get so upset with my neurologist when she starts to tell me what "exercises" I should be doing to prevent my muscles from atrophying. My muscles are plenty strong - I can tell that just by flexing my arms (a gluten free diet helps keep muscles strong).

Exercise isn't ever going to build up our endurance, because the problem isn't our muscle tissue - our problem is the neuro-receptors which are ON our muscles; they don't work. All the exercise in the world will never change that.

I don't know about you, but I do not want to find myself on a ventilator. I am unwilling to meet someone else's expectations of what I SHOULD be doing, because unless you have lived in a body with MG, you really and truly cannot understand how tiring the least bit of exertion can be.

We have to learn to give ourselves permission to take it easy. If the ones we love don't want to lose us, they HAVE to understand that we cannot do the things that other people take for granted.

We aren't lazy, we aren't "out of shape", and it isn't that we don't have the drive/willpower/desire to do more - I rail against the limitations of my body every single day. But I have learned to accept the fact that there isn't anything that I can do to change those limitations.
For real!! I have people that keep telling me to exercise, or start lifting weights so I can become stronger. I have explained this, and explained this, but they just don't get it. Thankfully my MG specialist that works at the MDA hospital near here understands. He has told me numerous times on how dangerous exercise can be for MGers. Many more doctors need to be more knowledgeable on this issue. It is extremely important!

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Old 07-31-2012, 11:52 AM   #12
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I seem to find that my extended family is not very understanding. They can't understand why I don't want to go and do all the things that I once did. I seem to be lazy and not wanting to participate in family activities. Then when I do try to do things and I get extremely short of breath, they tell me it is because I don't get enough exercise.
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Old 07-31-2012, 02:15 PM   #13
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I've found that most ppl do not understand this disease....it's very hard to balance activity in a way not to cause problems....before my final dx, tried water exercise on drs orders....was not a problem at first, just exhausting..then, one day after the usual time, couldn't get out of the pool without help, then sat/fell down & just could not get up to get to the showers for over 25 minutes...boy, was I in tough shape then, shortness of breath is no fun & it's a constant problem for me...reminded me of sev'l episodes I've had in prev. yrs, when air travel caused the same problem, had to have help to get out of the seat & walk...this I think cuz I was so nervous, white knuckle disease, lol...wore me out....nowadays, since I now know the problem, I use wheelchair at airports & a scooter/bike when walking is an issue....

Southblues, I've 3 horses & haven't been able to ride, but sure would love to try getting back in that saddle....it's a goal for me now, even if it's just short jogs....gotta get that wieight off too, tho....what a dilemma this is....

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Old 07-31-2012, 07:59 PM   #14
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Use a mounting block to get on. I get my husband to saddle the horse. Once I get up, I'm ok, that is unless I fall off. It only happened once as a result of sudden weakness. Once we start going, it's not that hard. If you just ride along slowly it is not that much exercise. I don't think that I am up for jumping any more.
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Old 08-01-2012, 12:32 AM   #15
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My horse and I grew old together...but when it got to the point where just grooming before tacking got me so exhausted I didn't have the energy to ride, I started the journey of trying to figure out just what was going on.

We retired and I spoiled her for 3 more years - until she was 28. What a wonderful 25 years we had together!
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Old 08-01-2012, 01:07 PM   #16
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I hope I didn't come across as "anti-exercise" in my mini-rant the other day; if it makes you feel good, by all means do it!

I just don't want people to feel guilty if they find that they don't have the energy to exercise - I tell my family it's kind of like a phone battery or a laptop battery; the more you use those devices, the faster they run out of juice. You can't do "condition training" on a phone battery; when it's dead, it's dead. If you don't recharge it, you can't use your phone.

MG'ers are the same way - only "dead" might really and truly mean DEAD. No recharge, no do-over, nuthin. If our batteries run out, we're pushing up daisies.

And then they'll feel bad, huh?
*does best imitation of sulking 5-year-old*

P.S. Don't think of it as "lazy" - think of it as "conserving energy"....

Last edited by teresakoch; 08-02-2012 at 09:35 AM.
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Old 08-02-2012, 08:44 PM   #17
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I refuse to give up riding, even if just walking! Last week all I could do was brush her but it sure was nice to get out and see her and give her and her pal some apples.
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Old 08-03-2012, 10:53 AM   #18
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It seems that there are several horse people here. Cool!
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Old 10-19-2012, 01:03 PM   #19
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Default thank you for this!

I just wanted to thank you for putting into words everything I have tried to explain to close friends, my EX, and family who can't or refuse to get how exercise can affect and exacerbate my MG. They are quick to tell me how much stronger I would be if I went to the gym or worked out. I use to be active and social and my MG was pretty much controlled with medications and treatments I was diagnosed in 1999. However the last 4 years despite increase in meds/txs/new meds, I've been unable to ever get that "second wind" that I use to be able to get and maintain. I appreciate, appreciate your eloquence of this subject.
Quote:
Originally Posted by teresakoch View Post
I may upset some people here, but FWIW, I get REALLY upset with doctors who "recommend" exercise for patients with MG - it tells me that they truly don't get it. Our problem isn't that our muscles aren't "strong" enough - our problem is that the receptors that take in the chemicals that make our muscles work have atrophied.

All the exercise in the world is not going to change that.

For people with MG, exercise can - quite literally - KILL THEM.

If we exercise, we are requiring our muscles to use up all of the "juice" in them. Since our receptors are unable to pull in ACh at the same rate as everyone else, once our muscles have used up the ACh that is there, that is it - our muscles shut down and we collapse.

The frightening part is that one set of those muscles is the group that allows our lungs to expand and contract. If all of the ACh in our system is used up, those lung muscles CEASE TO FUNCTION. If our lungs can't expand and contract, oxygen cannot get to our brain and WE WILL DIE.

The only way to save someone with MG whose lung muscles quit working is mechanical ventilation.

It is vitally important that our doctors understand this - I get so upset with my neurologist when she starts to tell me what "exercises" I should be doing to prevent my muscles from atrophying. My muscles are plenty strong - I can tell that just by flexing my arms (a gluten free diet helps keep muscles strong).

Exercise isn't ever going to build up our endurance, because the problem isn't our muscle tissue - our problem is the neuro-receptors which are ON our muscles; they don't work. All the exercise in the world will never change that.

I don't know about you, but I do not want to find myself on a ventilator. I am unwilling to meet someone else's expectations of what I SHOULD be doing, because unless you have lived in a body with MG, you really and truly cannot understand how tiring the least bit of exertion can be.

We have to learn to give ourselves permission to take it easy. If the ones we love don't want to lose us, they HAVE to understand that we cannot do the things that other people take for granted.

We aren't lazy, we aren't "out of shape", and it isn't that we don't have the drive/willpower/desire to do more - I rail against the limitations of my body every single day. But I have learned to accept the fact that there isn't anything that I can do to change those limitations.
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Old 10-24-2017, 09:38 AM   #20
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Some days I feel like walking a mile or so and other days I am just "tired." One doctor told me to "just stay active." My husband thinks the more exercise the better. Advice please.
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