MDA Mailbag Summer 2013

by Quest Staff on July 1, 2013 - 9:01am

Quest Vol. 20, No. 3

IBM patient survey

I am writing to thank you for the enormous help you provided in spreading the word of our survey to patients with inclusion-body myositis (IBM) [IBM Survey Open, April-June 2013]. Since MDA first posted information about our survey on its website in late January, we have received 245 additional online responses and roughly 30 paper surveys have been requested/sent/returned. Response to our other outreach efforts had virtually run dry by the end of December 2012, so we attribute all of these additional surveys to the work of MDA. This brings our total to roughly 950, which is a much greater number than we had ever thought we would obtain. We are going to begin the analysis of the data in the next few weeks. I will be sure to keep you updated, especially since one of the first “deliverables” we aim to produce is a very basic FAQ page for patients, providing info on demographics, clinical histories, disease progress and the like. But for now, a very sincere and heartfelt thank you!

A. David Paltiel, Ph.D.
Yale School of Public Health
Yale School of Management
New Haven, Conn.

Seeking college-goers

I’m a high school student with Duchenne muscular dystrophy who will be attending college in the near future. I, like many students with disabilities, have so many questions about the transition, what to expect at college, and how to find accommodations after having my parents as my care providers for so long. But what I realized is that there are so many disabled students who made the transition who could help alleviate my concerns. Thus, when I was given the chance to do an independent study in school, I decided to create a guide that would compile interviews of [people with disabilities in college] or who have completed college. I contacted colleges and MDA groups and found some people, but I need more participants. The best way to do this is to ask the wider community, which in this case are the readers of Quest. If anyone is interested in participating in my project, please contact me by email at tssurampudi@gmail.com.

Tayjus Surampudi
Hillsborough, N.J.

Editor’s note: Thanks to all who help Mr. Surampudi with his project. In addition, those with questions about moving from childhood to adulthood with a neuromuscular disease may visit MDA’s Transition Center and click on the “resources” tab for helpful information. MDA’s Tips for Success Kit is another rich source of help.

OPMD and swallowing

My kingdom for a hamburger, fries and a bottle of beer. I haven’t tasted them since oculopharyngeal muscular dystrophy (OPMD) took over my life several years ago. My swallowing of both solids and liquids became difficult, and the choking could no longer be tolerated. A feeding tube went into my stomach. I can live with that, and I make believe sometimes, as I pour the liquid food into the tube, that it is something good like a bowl of Rice Krispies. I can’t swallow my saliva or nasal drippings, and rely on a suction machine and expectorants to discharge them from my throat. I would appreciate the thoughts of others with OPMD. Email me at talloak@buckeye-express.com.

Ronald Everett
Maumee, Ohio

Editor’s note: Please see the 2009 MDA report In Focus: Oculopharyngeal Muscular Dystrophy for information about the causes and symptoms of the disease, as well as medical procedures that can alleviate some of its problems.

CMT and curcumin

After reading the article in the spring issue of Quest [CMT: Can curcumin help type 1B?, April-June 2013], I thought I’d write. I’ve been taking curcumin for about a year (400mg of BCM 95 containing 95 percent curcuminoids with volatile oils of tumeric rhizome). I’m not noticing any real slowdown of the Charcot-Marie-Tooth (CMT) disease. I know I have no pain from the falling I do as the result of one foot not moving or one knee not wanting to move when I start walking. I am 68 years young and have no indication of osteoporosis anymore. I did have it, but I found [help through] a dose of Isotonix Calcium in the morning and at night, and Isotonix Vitamin D3 with K2. I never have liked any of the drugs the doctors give out, as I don’t like side effects and lean heavily on natural products.

Linda Bonar
Portland, Ore.

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