MDA Clinics

I just had my semi-annual visit to the Muscular Dystrophy Association (MDA) Clinic. It is always an experience. The clinic I attend has neurologists and students from Emory University School of Medicine. I have been attending this clinic for over five years. My neurologist is Linton Hopkins, Jr., M.D., and he is great. I always enjoy seeing him. Dr. Hopkins is also very supportive of the Kennedy's Disease Association. He always introduces me to his students as a "rare bird."

The MDA Clinic also gives me an opportunity to educate upcoming doctors on Kennedy's Disease. 99% of the students have never heard of Kennedy's Disease or Spinal Bulbar Muscular Atrophy, so that always makes it interesting. The MDA Clinic is also a valuable resource for other services. A MDA representative is always on hand to discuss other needs and opportunities. These representatives are quite knowledgeable and have a long list of other resources readily available.

This visit was interesting because I am looking at getting a new wheelchair. Knowing that the next chair needs to last five years or more before being replaced, I have to make some decisions as to my current and future needs. The MDA representative recommended that I schedule an appointment with an occupational therapist (OT) at the Emory Hospital. This OT is familiar with progressive disorders and will have a much better understanding of my future needs. Unfortunately, Emory is a two-hour trip (each way). I do not look forward to spending a long day on the road and sitting in a hospital, but this might be a good opportunity. One additional benefit is that this therapist has several chairs available for testing to make certain I am comfortable with the capabilities and controls. 

Reference the MDA, I recommend that anyone who has Kennedy's Disease should register with them. They have a multitude of resources and support services available. My only complaint with the MDA is that they do not have any group or person focused on Kennedy's Disease support (it is
a rare disorder). That is one of the primary reasons why the Kennedy's Disease Association was formed. Fortunately, both organizations offer somewhat unique, but complimentary services.

So, if you have Kennedy's Disease and have not registered with the MDA, please go to http://www.mda.org/. In the middle of the home page is a form to "Find your local office." In addition, if you have not joined the Kennedy's Disease Association (KDA), go to http://www.kennedysdisease.org/. Near the top of the home page is a "Join the KDA" button. You will be glad that you joined both organizations.

Until Friday then, stay healthy and upright.