Activity

Yes, sometimes the most worthwhile activities and experiences do take it out of us but that’s what makes life worth living!

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 y…[Read more]

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.

Are they the elastic shoes laces where you can just slip your foot inside? Because I’ve thought about getting those. They would make life so much easier.

One recent thing I’ve added to my wardrobe recently are the Klassy Network padded bra tops. They’re absolutely amazing, stylish and comfortable. I can sleep in them and go to doctors appoi…[Read more]

Rick, I’ve never heard of using Botox to treat the sphincter but that’s absolutely genius! What an amazing suggestion by that neurologist. I love doctors that truly are problem solvers. You must be so happy to have that problem solved and be able to have that quality of life back.

Hi Robin. I have had very similar issues for about 5 years. Going to several different ENT’s and speech therapists never helped at all. I found my solution after visiting a MD conference in Miami a few years ago and the neurologist suggested I visit Dr Chheda, MD at the Univ of Florida, Gainesville. He took one look at my throat through a camera…[Read more]

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, in…[Read more]

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.