Primal and Muscular Dystrophy
I haven't been here in a while, and it feels a little weird to be 'back'. I was primal for three months, then started indulging in cravings more often, and then the diet took a turn for the worse and I dropped the whole thing. I know it was and is the pathway to a healthy life--you don't have to convince me of that. Which is why I'm coming here to ask this:
My college classes have started and I've made a friend who has Emery–Dreifuss muscular dystrophy. He's in a wheel chair already (well, it's more like a scooter) and his leg muscles look almost completely degenerated. Is it too late for me to suggest going primal? Would it even help at this point? I know many people rightly claim that going primal is the wonder cure from everything from a cold to cancer, but muscular dystrophy?
I'd want to go back to being primal to set an example if I were to introduce him to it. I'd do it if it would help him.
So my question is this: if he went primal, would he see improvement? Complete improvement or partial?
While I do think primal eating is the best way to stay healthy, it is difficult to envision how it could help your friend regarding his muscle function. His body is unable to make a certain protein that seems to be needed for muscle health. Even if he is taking in optimal nutrition, his body just doesn't have the proper "map" to make this protein function.
Originally Posted by Aly
You should get healthy for you If he expresses interest in your diet or in improving his health in some way that could be diet amenable you could definitely introduce it. Personally, I would not introduce it as a way to improve his MD. He's is lucky though to have a friend looking out for him!
No. Maybe you should educate yourself a little about how muscular dystrophy works.
Originally Posted by Aly
Shockingly, eating a good diet isn't a panacea and can't get rid of every human ailment ever.
As someone who has has MD myself for over 20 years, and has done extensive self-experimentation with diet and supplementation, I have a few observations to share.
~ I agree that a complete reversal of the condition is unlikely and unrealistic to expect, whether your friend decides to go primal or not.
~ However, diet *does* play a large role in health, whether you have a neuromuscular disease or not. The fact is, those of us with MD have compromised muscular function, and therefore it's *extra*-important that we follow an optimal, primal lifestyle. Other, physically normal people might be able to subsist on junk food for years without showing signs of disease, but people with MD are going to harm themselves further with every mouthful of grains and junk that they consume.
I have finally gotten around to going 100% primal as of the beginning of this month, and I already feel the benefits (more energy, a little more strength, etc.). What surprised me is that I had already been ~80% primal for ~12 years before that, so I hadn't been expecting a noticeable improvement. But yes, especially for MD, apparently, every little cheat does matter.
~ There also appears to be an interesting relationship between liver function, muscle strength, and insulin levels. I haven't worked out the biochemistry details yet (and I don't know that anyone understands the relationships yet), but there is strong evidence that muscle function suffers when blood glucose & insulin levels are consistently elevated. This fact definitely motivates me to stay away from the grains and sugars.
I've noticed that there is a large subset of the MD population that has a distinctive pudgy, puffy, bloated look to them. I have to wonder how much of that appearance is due to poor dietary choices (and consequent elevated insulin levels) vs. unavoidable effects of the disease.
~ If your friend is motivated to improve his condition, I'd encourage him to experiment with supplementation. In the past, I found that simply starting on a high-quality multivitamin gave me a many-fold strength increase over the course of only a few days! (went from taking 60+ minutes to get up a flight of 15 stairs & being completely drained by the end of the process, to getting up them in <3 minutes and having plenty of strength left). This strength gain didn't last permanently, but did 'set the clock back' on my disability by several years, which was fantastic. The dramatic and fast improvement suggested to me that I was simply, at least in part, lacking one or more nutrients that my muscles needed to function... which motivated me to persist in experimenting with supplements.
~ Encourage him to do web research relating to supplementation & MD. The Life Extension Foundation & PubMed are two good resources. Among the supplements that have been shown to help certain forms of MD are: selenium, vitamin E (d-alpha tocopherol, I take 4000 IU/day), other antioxidants (I take 12 mg astaxanthin & 3+ g vitamin C/day), ubiquinol/coQ10 (I take at least 100 mg ubiquinol/day), fish oil (according to some sources such as Dr. Barry Sears, people with neuromuscular diseases should take 15g/day -- I can only manage 8-10 g on most days; my appetite just disappears if I take any more than that); amino acids glycine (15 g/day), creatine (~5 g/day), carnosine (1 g/day), glutamine (5 g/day).
~ Fwiw, I haven't noticed any problems with intermittent fasting (IF). I try to do 1-2 24-hour fasts per week, and often do several 16-18 hour fasts through the rest of the week. IFing allows muscles time to repair, and I haven't noticed any decreases in strength -- in fact, I've been feeling more energetic since I started IFing a few months ago. It's just important to get in all of my nutrition during the times when I *do* eat.
~ Encourage your friend that, despite what the ignorant doctors say, improvements in strength *are* definitely possible. There are volumes of clinical studies of various supplements that show unequivocal strength increases for certain populations given certain supplements. And I have no doubt that if there were a clinical study comparing people with MD who consume a CW diet vs. eat primally, the primals would definitely fare much better in the long run.
~ Above all, don't force anything on your friend. Personalities vary widely, and you'll find some people with MD (such as myself) who ignore conventional medicine & are motivated to find solutions on our own, while others get very offended if you offer help, and don't want to do anything apart from listen to their doctor's pessimistic prognosis. I have, myself, gotten into trouble by offering nutritional suggestions to a CW-subscribing, carb-addicted person with MD... to each their own.
Last edited by healthseekerKate; 08-22-2011 at 10:25 AM.
Hi. I have been looking for a healthy eating solution/lifestyle for my husband and I. My husband has limb-girdle muscular dystrophy. He is gradually losing mobility as people with this disease do. He can walk a little ways holding on to me but not really enough to burn many calories. Since he has become more sedentary he has gained a bit of weight (not fat just a puffy belly). Kate thank you so much for this info on the supplements. I am not sure which type you have but maybe some of your suggestions for supplements may help him. The doctors he see never have ANY suggestions to help "turn back the clock" or prolong it. Obviously he will not rebuild lost muscle but maybe this will help him preserve what he has left and boost his energy. I have been reading info about this primal thing but I am still hesitant to try it for my husband because of his condition. (I think the fasting thing may be dangerous for him, what if it deteriorates his muscles further? Also he can't really exercise.) I would love to talk to a nutritionist that understood his condition and this diet/lifestyle. I wonder how I would go about finding someone like that. Anyways. I was glad to find this topic on this site. Hopefully we can find something safe that works for us.