Let me introduce myself. I'm Ed Barbarash (pronounced Barber-ash) and my wife and I live in St. Louis County, Missouri. I and a younger brother have FSH. I retired in 2007 after 50 years in the Information Technology field. I started with the punch card machines that came before computers and then worked as a programmer, analyst, trainer, consultant and manager on systems ranging from payroll to inventory control to e-mail (which in 1988 ordinary people had never heard of).

In 1998, at the age of 58, I noticed that I had worn out the toe of my right shoe. After it happened again, I went to a neuro-specialist who diagnosed it as foot drop. Over time I had to go into an ankle-foot orthotic. I also had trouble raising my hands above my head. In 2003 I went to the Washington University Neuromuscular Center in St. Louis to see an MDA specialist. At that time I had the symptoms of FSH, but not the DNA marker. In 2007 they confirmed it was FSH. As I look back I now recognize some early signs. In my teens I had trouble running as I would break stride. My mother joked that I was the only kid she knew that fell up the stairs.

Nine months ago my brother Gary, who lives in the Washington DC area, complained about his back and shoulders and I told him to see the MDA. They tested him and he also has FSH. We're not sure who had it in our family although we think it was Mom. However, in her mid-70's she had a stroke which left her numb on one side of her body, from shoulder to foot. She had the same kick that Gary and I have, but nobody would have thought to check her for Muscular Dystrophy.

I have little to any problems with my face muscles, but I do have trouble with my abdominal muscles. I have to use an Oxygen Concentrator at night, since my lung capacity is slightly under 50%. I was using portable Oxygen, but I lost over 20 lbs recently and have not had to use that for months. I started using a cane in 2005, but now use a walker about 90%. Recently I began using SmartVest from Electromed, Inc. I've found that after using it and coughing up some mucus, I sleep longer and more soundly.

I keep busy by working two days a week at a local hospital doing patient information. Recently I even put together an article which I copyrighted called "A funny thing happened on the way to volunteering." It's all about the crazy phone calls and visitors that I've handled over the last 3 years. The rest of the time is spend on doing genealogy research on my family, going to the casino, senior socials, going to the movies, and visiting with my 3 children and 5 grandchildren.

It's hard for my wife, and kids for that matter, to understand how I feel about this disease and how much I want to continue to be functional and independent. In our 50's we did a lot of traveling and taking cruises, so I have those wonderful memories of this country, Canada and Alaska. But my wife is reluctant to travel now that I use a walker and have to stop frequently to catch my breath. But I keep pushing to do more, go more places and hope to wear her down or win her over.

Note — my pulmonary doctor recommended I go on the medifast diet to remove the fat around my stomach. He felt that this high protein, low carb and fat diet would not cannibalize my muscles. I've lost 31 lbs, stopped using the portable oxygen during the day and I feel wonderful.