Ralph Yaniz
Forum Replies Created
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This is one of the most difficult issues for me with my limb girdle muscular dystrophy 2L. The two things I struggle with the most are getting up and down stairs and getting out of chairs. Early in my muscle loss I preferred chairs with arms so I could lift myself up. But as I have gotten weaker, this has become too difficult and I actually prefer chairs with no arms so I can put my hands together in the middle of the chair between my legs to lift up. I seem to get more force this way. One thing I learned is that having some sort of a band or belt just below my knees and around both legs helps me to get up as I push out against the band. Because my abductors are still strong this works well and sometimes even getting up off the toilet works this way when you can use your pants in this fashion as leverage.
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Really liked the piece you wrote and it’s quite true. Stretch goals are great but we need to know our limits and also know when to take breaks and pace ourselves.
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Danielle, admittedly it’s often hard to tell. Because we all have good and bad days it’s a bit difficult to say what is making you feel better. I have stops many things because I didn’t feel any different. The few things I take now can be tied to just better health in general. Because there are no cures or treatments for LGMD2L I know what is good for me is the only thing I can control. Being healthy means good heart, good blood pressure, strong bones, etc. I believe everything I takes helps with that.
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This is always an interesting topic. I’ve found that many people swear by one vitamin or supplement while others may find help with something different. I personally take Co Q 10, Creatine, Vit D, Vit B/C and then a Magnesium, Pottasium, Zinc pill. Low dose. I’ve tried many other things in past. I have LGMD2L. I believe these supplements can be helpful and because each of us is different, we may very well see differences in how these affect us. My neuromuscular doc reminds me that while I have a gene with a mutation, we also have 20,000 other genes that make us unique even when compared to others with a similar illness.