New Members!

[Robin]

I was recently diagnosed with oculopharyngeal muscular dystrophy. Although I’ve had some symptoms for years, I never thought they were connected to a disease. I’m struggling a bit to accept this diagnosis and the changes that lay ahead for me. Currently besides the dysphagia and ptosis, my leg muscles are pretty weak.

[Leah Leilani]

Hi Robin. I know what it’s like to finally get diagnosed and all of a sudden connect the dots to earlier signs of the disease that you may have dismissed. I am happy for you that you now have a diagnosis and at least have an answer to and label to your symptoms. Hopefully, the forums will provide you with helpful ways of dealing with all that you are facing. I will say that it may take you a while to feel comfortable in your newly diagnosed body but trust the process and be open to befriending members of the MD community.

[Karl Evans]

Hi, friends.  At birth, my doctor noted that I was a “Floppy Baby”.  Years later, he told me he also mentioned that I probably would not live to see my third birthday. He did not know why, only that I had some kind of “muscle or nerve problem”.  Last month I passed my 82nd birthday, with 4 children, 10 grandchildren and 19 great grandsons, including 2 Marines.    A few years ago I was diagnosed with Cardiac Gelsolin Myeloma, Leukemia and diabetes. Then, last year, a repeat diagnosis of these, plus Limb Girdle Muscular Dystrophy r23 (LGMDr23) with Walker-Warburg , Creutzfeldt, and some other stuff.  I worked hard from age 2, played, coached and officiated football, Drove truck, pastored, backpacked around Idaho and Oregon, clung to my faith, now been married to the same woman for 62 1/2 years. I know that some others will not have all the chances I had, but everyone can try just a little harder.  Now, any other r23’s or Gelsolin old-timers around? oldkarl

[Leah Leilani]

Hey Karl! Thank you for joining our forums and sharing your story. It’s sounds like you’ve had a very full life and have a wonderful family that can be your support system. I too was a “floppy baby” when I was born and needed physical therapy at an early age to build muscle. I was then diagnosed with Mitochondrial Myopathy when I was 9.