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exercise/condition for someone with early diagnosis
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Registered: 10-16-2011
Posts: 3
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Hi,
I think I was diagnosed relatively early in life, thanks to a diligent family doctor. I'm 31 years old, still fully functional, I just get the odd muscle cramp and/or twitch. I'm trying to figure out what I can do now in life to try and mitigate the symptoms coming in the future.

Does it make more sense to gain as much muscle and strength while I can, or is increasing muscle mass going to accelerate the progression? I'm sure it's not a clear cut thing, but I was wondering if I should adjust my lifestyle at all.

Currently I take part in sports 1-2 times a week, but don't lift weights (other than my kids I guess).

Any guesses? Thanks!
Registered: 10-22-2005
Posts: 142
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Hi Daniel
Glad you found your way here. Progression of symptoms is a highly individual thing, as is how you choose to live your life; at 31 with mild symptoms, you likely have decades of "normal" life ahead. My opinion is that playing sports and a work-out is a good thing, and you should continue as long as it is comfortable. I don't think I would get too hung up in building muscle mass.
Registered: 08-02-2009
Posts: 206
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Daniel, so far there have been no published scientific studies on the question of whether exercise is good or bad for people with SBMA. Actually, there is a study being recruited for right now (October 2011) at NIH. You can read about the study at this link, and even volunteer to participate if you want. You would probably get lots of free physical exams and have ample opportunity to ask questions of the experts at NIH.

Despite the lack of studies, however, everyone I have talked to has told me the same thing: exercise, within reason, makes them feel better. I believe the exercise has to be moderate and targeted. By moderate, I mean don't overdo it; if you exercise to the point of pain and cramping, either during the exercise or the next day, that's too much. By targeted, I mean your exercise should focus on the specific areas affected by SBMA, which includes the proximal and bulbar muscles. If you're not sure what exercises to do, get with a physical therapist or restorative yoga teacher who can help you. The local chapter of the Muscular Dystrophy Assn. (MDA) can probably give you a list of PT's who work with people having muscle diseases.

You mentioned you are getting the odd cramp at age 31. Trust me, the cramps will get worse, but stretching will help a lot, and stretching is even more important if you are exercising. If you know how and what to stretch, great; if not, you may need to ask the PT or restorative yoga teacher. Again, your stretching needs to be targeted to the areas affected by SBMA.

By the way, I have given up on lifting heavy weights to build muscle. I believe the gym machines were isolating my muscles too much, resulting in lots of little injuries in the connective tissue (tendonitis or bursitis) which were painful and required rest to heal. I have had excellent luck with walking (with or without 2-lb. handweights to work the upper body), swimming, and gentle yoga.

One more thing: as a person with SBMA, you are losing a small amount of muscle mass every day, which shows up on your creatine kinase blood test. When you are exercising, you need to give your body the raw materials it needs to build muscle. That can be as simple as eating an extra serving of protein each day (for breakfast have meat or eggs instead of cereal), or as complicated as hitting the supermarket or health food store to buy bodybuilder supplements (such as whey protein and creatine). A teaspoon of creatine powder in a glass of milk, taken before exercise so it's in my system while exercising, really helps my recovery time.

There are exercise resources on the KDA website at this link. Also there is an exercise piece on Bruce's blog at this link.

This message has been edited. Last edited by: Dan B,
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Registered: 09-28-2005
Posts: 654
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Daniel, asking this question now is important. Most of us did not have this type resource available to us and we floundered.

I started having symptoms in the late 20s and early 30s. Being somewhat a jock, I pushed myself even harder and lifted more weights. Later in life I found this was not the right thing to do.

"Smart" exercises (as Dan mentioned above) are the way to go. Yes, you can push yourself a little, but not to the point of exhaustion or experiencing recovery issues.

And as Cam mentioned, enjoy life. Experience it as any red-blooded young man would. You's have time enough to live with KD later on. For now, "just do it".

Also, there are two research projects that we are very interested in right now. The first is ASC-J9 and the second IGF-1. You can read more about them on my blog or the KDA website. If approved in the next few years, they could be especially important for those in the early symptoms stage.
Registered: 10-16-2011
Posts: 3
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Hi Cam, Dan and Bruce,

I have to say I'm overwhelmed with how thoroughly you have replied to my post. It really warms my heart to see, thank you a million times!

My wife was bugging me about not overdoing it, and you have reinforced that, so I guess she's right... again. Wink

The creatine kinase test was actually the first clue my doctor saw after she listened to my complaints of muscle cramps. I have been informed of the research project and I use the KDA website frequently.

Again, thanks for all the information. I'll keep up with the sports I do today, and I'll try to put a bit more protein in my diet for sure. Thanks!
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Registered: 09-28-2005
Posts: 654
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Daniel, yup, unfortunately our wives are almost always right. Live with it! Smiler
Registered: 08-02-2009
Posts: 206
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quote:
Originally posted by Daniel:
....The creatine kinase test was actually the first clue my doctor saw after she listened to my complaints of muscle cramps....


Daniel, your doctor is brilliant. There is probably not one doctor in ten thousand who could make the diagnostic link between muscle cramps in a 31-year-old male, to a creatine kinase test, to figuring out that you have SBMA. Many of us have endured up to five years of tests and mistaken diagnoses before being referred to a neurologist and getting a correct diagnosis.

Hang on to that doctor!

This message has been edited. Last edited by: Dan B,
Registered: 10-16-2011
Posts: 3
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I guess to be completely fair, she initiated the process by finding out my CK was high. She then referred me to internal medicine, who then referred me to a neuromuscular clinic, who then referred me to the doctor who on a whim decided to get my genetics checked. He noticed I was generally a bit twitchy, and my grandfather had had a questionable ALS diagnosis, so it finally all added up. I definitely agree though, my family doctor is hands down the most thorough and caring doctor I know. In general I feel blessed to have seen so many doctors taking the extra effort, and extra blessed to live in a country where this was all done free of charge.
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