Robin

I spend a lot of time in bed due to intense fatigue. I’m sure it’s a combo of my fibromyalgia and OPMD.

Rick, I’ve heard of that. I have my first appt with the local MD clinic in September. Will discuss that then

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.

I’ve had swallowing issues as well. I’m working with a speech therapist. It’s really hard for my husband watching me eat. He worries about the choking, regurgitation, and the rare occasion I bring everything back up because it just won’t go down.

To be honest, I’m not looking forward to the anticipated progression.

There’s a loan closet near me also, it’s where I recently got a more stable rollator for using in the house.

I agree with what you said. For me, I’m happiest when I’m holding my new grandson, he’s so precious!

I always pay a price physically when I visit him, but it’s so worth it!