MDA Mailbag Summer 2010

by Quest Staff on July 1, 2010 - 2:38pm

QUEST Vol. 17, No. 3

Letters to Quest: Changing professions * A brave fight * Believing in a cure

New education, new job

I am 52 years old and was diagnosed with myasthenia gravis in 2000. Over the past 10 years I have been through about every treatment known for myasthenia — thymectomy, prednisone, CellCept, Imuran, cyclosporine, plasmapheresis, IVIG, Mestinon and Mytelase.

I am a registered respiratory therapist and prior to my diagnosis, and during the first five years or so of my treatment, I continued to work as such. Eventually my disease progressed to the point I could no longer work in my chosen profession and I was placed on disability. This was not how I wanted to spend the rest of my life. I worked with vocational rehabilitation and used my respiratory background to obtain my certification in polysomnography.

I now work full time as a registered polysomnography tech doing sleep studies at Cincinnati Children’s Hospital. My disease continues to fluctuate, but my new education allows me to work again.
Connie Guyor
Liberty Township, Ohio

mailbag picHis life was a blessing

I just want to thank you for such a great magazine — very informative. My son, Jimmy (18), had Duchenne muscular dystrophy and passed away on February 19. He was a goodwill ambassador for MDA a couple years ago. He was also a talented artist, and a builder of all kinds of things — cars, trucks, space machines, etc. He was on the cover of Quest (“Dolphin Adventures,” January 2007) swimming with dolphins. He really enjoyed that.

I would like to talk to other moms who lost a son to DMD. My son had spinal fusion surgery on May 14, 2009. It was 11 hours long and he caught pneumonia while in the hospital. For his 18th birthday in July, he was really happy to finally be home. He came home on a respirator, with a trach and was doing fine. In December, he wanted to be off [both], so he had to take a lot of tests before his doctors would [allow] it. He passed every test. He was so happy to be off everything.

I spent every day with him. I had a couch put in his room so I could be next to him. He passed away in his sleep. Jimmy was very strong, smart and brave, right to the very end. He taught me a lot in life. I was blessed because of him.

Tina Blando
Port St. Lucie, Fla.

The sticker cure

I wanted to share a story about children’s innocence.

My daughter saw fire fighters collecting for the Fill the Boot campaign on a local road. My 3-year-old twin grandsons were with her, so she gave each of them some money to put in the boot. In return, the fire fighters gave each of them a sticker to put on their shirts. My daughter explained that the money was going to help people like me. (I have type 2 myotonic muscular dystrophy).

When they arrived at my home, one of the twins ran over, ripped off his sticker, stuck it on my shirt and said, “Now you’re all better MeMe, and now you can pick me up!”

If only a cure was so easy!

Mary Childress
Chesapeake, Va.

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