I would like to find out [about] other people with FSH [facioscapulohumeral muscular dystrophy] who have had scapular fusions to their rib cage, and how it helped or hindered them after having it done. I’ve had my scapula fused for 22 years now. The last 10 years, I have had chronic pain. I live with pain 24/7 and had my second spinal cord stimulator implanted in 2011. As long as I have received Quest, I have never seen anything on how many [scapula fusions] have been done and the risks or benefits after such a long period. The doctors I’ve seen over the years tell me that with the fusions, I’m carrying my upper torso in a different manner. I have lost a lot of upper body muscle in my torso. There is no muscular dystrophy anywhere in my family tree.
Ronald E. Burza
Editor’s note: See “When Form Meets Function: Exploring Surgery to Restore Muscle Power in FSH Dystrophy” (Quest March-April 2003) for an examination of the pros and cons of thoracoscapular fusion surgery.
I have MD and I’m 58. I enjoy staying in touch with others; it helps to smile. We miss the Pen Pals section that was in the Quest magazine. The Pen Pals section helped a lot of us that get this magazine to touch base with someone else that has the same type of MD and by talking to someone else, it lifts our spirits. Not all of us with MD live in a town that has an MD support group to go to, so we rely on the Pen Pal section. I hope the magazine will put the Pen Pal section back in. A lot of times a computer is not an option for some people. Some of us live in small towns or in the country where we don’t have a lot of options except to wait until Quest magazine gets to us so we can write to a pen pal. So don’t take this from us.
My daughter and three grandsons have myotonic muscular dystrophy, as did my late son. Last year, I wanted to do something special for the people who had been in the Quest Pen Pals section by sending each a Christmas card. I knew I needed to start in October to get the Christmas card to each person by the first week of December, giving them time to send me a Christmas card in return. Choosing the right card for each special person was a Christmas gift from me. The cost of stamps and my time and the goal I had were a Christmas gift to me. I didn’t realize what a big job I had set for myself, but when I finished I felt wonderful. I sent cards to young and older people. To my surprise, I received only one Christmas card back. My grandson Justin said, “Na Na it isn’t you, people email and have cell phones, and do a lot of texting. Facebook, computers, cell phones have changed the way people communicate. It’s changing times.” Quest is right [about discontinuing Pen Pals]. They have to change as the world changes. I like to write letters, but that is the way it is.
Please bring back the Pen Pals section of the Quest magazine. I believe the Pen Pals section is a vital part for your readers. I personally have been blessed with many pen pals, four of whom are my dearest friends. I thank you for allowing me that opportunity to make such caring and wonderful friends. Please allow other Quest readers that same chance.
Editor’s note: Pen Pals was discontinued in 2011 due to privacy concerns. Like many readers, we at Quest also miss this longtime magazine feature. Please contact your closest MDA office at (800) 572-1717 to see what other options might be available in your area.