Hello, my name is Kathy and I have LGMD and I’m sure if you are reading this you most likely have some form of Muscular Dystrophy (MD) and know that you are not alone.
Why did you enroll? Besides my siblings with MD I don’t know any others but it’s nice to know there is an incredible force of people at National Institutes of Health (NIH) trying to solve the MD puzzles. Not that I would choose this disease but it does put me in a unique position to help in the fight against muscle disease. I don’t expect a cure for myself from this study but I am hopeful by my volunteering now it will help people in the future to lessen or even prevent muscle disease.
What did the study involve? Dr. Zimmerberg’s study at NIH entails 4 visits for a week at a time. At NIH you are given your own room with your own bathroom. You’ll be given a menu to order room service. On your first day Dr. Zimmerberg reviews everything that is going to happen during the week and gives you ample opportunity to ask questions. Being the patient is pretty easy and I almost found it relaxing to slow down for the week. You’ll want to bring a lot of reading material or you can use the Wifi at NIH. You’ll be taken to various tests (MRI, EKG, PT assessment, etc.) by wheelchair so for a couple of days you don’t walk anywhere or do any physical exercise. The next few days you can leave your room and walk around the building and visit the coffee shop, cafeteria or the gift shops. Besides the tests they will be doing blood draws through the day and some of the nights at very specific times.
How would you characterize your experience in the study? I can say that there is no nicer group of people than the staff at NIH working on the MD study. They are very caring and take excellent care of you while you are at NIH for the week. It is a pleasure working with Dr. Zimmerberg and his team and believe it or not I am actually looking forward to my next visit.