Regarding Rock ‘n’ Roll to Soothe the Soul, (Quest Extra, July 2012): I too am a musician living with MD. I have limb-girdle muscular dystrophy, which makes getting on and off the stage quite a challenge, but I’ve been lucky enough to be in a band with some extremely helpful and understanding guys. Playing with my band, the Filthy McNastys, has been an incredible ride. We’ve opened for some big names, including Los Lonely Boys and, most recently, Molly Hatchet. We should record a benefit album to raise money for MDA! We could make a record comprised completely of musicians with MD doing their thing. If anyone reading this would like to get involved, please feel free to contact me and we can get the ball rolling. Think of all the fun we could have! Musicians could record parts individually and send me the tracks for mixing. We could put a record together with people from all over the country without any of us having to travel. (Unless, of course we go on tour … haha!) If anyone is interested, please contact me by email at email@example.com.
I have been dealing with OPMD (with severe pain) for over 20 years. In the beginning, I was told to exercise. However, I soon realized that by doing so, the muscles in my face went away much faster than when I didn’t exercise. So now, facelifts last seven or more years, rather than the five-year periods during the time I used to exercise. I am not happy, knowing that being sedentary will lead to osteoporosis as well as possible heart diseases. I would appreciate the thoughts of others with OPMD, especially those with severe pain. Email me at Diamondpaul48@yahoo.com.
Simi Valley, Calif.
When I read the letter from Mary R. Blan in Antler, Okla. (From Where I Sit, January-March 2013), and then I read the letter about the high cost of medical equipment, it makes me furious. I had to buy a 1995 van with a lift because I couldn’t afford a new model. I am a pioneer of MD. I am 62 years old now. I was a guinea pig when I was 7 years old at the National Institutes of Health in Bethesda, Md., and at Emory University in Atlanta, Ga. For me, I don’t think there will be hope any more for a cure. I just thrive on my ability to do things beyond my expectations. To readers out there, I say don’t quit. I find ways to do things that sometimes a normal person couldn’t do. It amazes my family and friends. My motto is, “if you can’t get someone to do it, then do it yourself.” I know Mary R. Blan’s problem about not being able to go some places. All I can say is, if you really want to go, then make it happen even if you have to get someone to carry you. Don’t let your disabilities keep you from doing what you want. As far as the cost of medical equipment, I feel like the government could give the companies a tax break, so they can bring down the cost. The prices for equipment are ridiculous. I have two children with LGMD. If they can find a cure for them, I’ll give my life. As for me, I thank God for the years I could walk. I accept my illness, and I know how to cope with it. So I say to all readers out there, don’t quit. Your ability is up to you, not doctors.
John W. Hall
This is in reference to a letter to the editor in which the reader states emphatically that IVIG does not help her dermatomyositis. However, please do not indict IVIG, as it brings grateful respite from symptoms of Lambert-Eaton myasthenic syndrome (LEMS) for which there are not too many options. IVIG unfortunately is very expensive, and Medicare has refused to cover my treatments since 2005. I have escalated this with Medicare to no avail and even have received the code explanation for the refusal in a Medicare booklet, where IVIG treatments are listed for both LEMS and myasthenia gravis (MG), among others, yet they refuse coverage. I am wondering if MDA can be of any assistance in getting Medicare to cover this treatment for orphan diseases such as LEMS and MG, and others. There must be numerous people who are being denied treatment to ameliorate the quality of their life. I am amazed at the successes MDA has achieved and am wondering if this could be one more cause you can add to so many others.
Editor’s note: Access issues are critically important to our community. MDA’s advocacy agenda is shaped by outreach and feedback such as this letter. To learn more, visit MDA's advocacy page.
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