-
Robin changed their profile picture 4 months ago
-
Robin replied to the topic Stuck in Bed in the forum Mental Health and Positivity 1 year, 2 months ago
I spend a lot of time in bed due to intense fatigue. I’m sure it’s a combo of my fibromyalgia and OPMD.
-
Robin replied to the topic Difficulty chewing or swallowing food? in the forum Tips, Tricks, and Advice 1 year, 4 months ago
Rick, I’ve heard of that. I have my first appt with the local MD clinic in September. Will discuss that then
-
Robin replied to the topic New Members! in the forum Using Our Forums 1 year, 4 months ago
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.
-
Robin replied to the topic Difficulty chewing or swallowing food? in the forum Tips, Tricks, and Advice 1 year, 4 months ago
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.
-
Robin replied to the topic Mobility aids and products in the forum Mobility Aids and Medical Equipment 1 year, 4 months ago
There’s a loan closet near me also, it’s where I recently got a more stable rollator for using in the house.
-
Robin replied to the topic Happiness is a Mindset, not a Destination in the forum Adults With Muscular Dystrophy 1 year, 4 months ago
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!
-
Robin posted a new activity comment 1 year, 4 months ago
Thank you Leah!
-
Robin's profile was updated 1 year, 4 months ago
-
Robin changed their profile picture 1 year, 4 months ago
-
Robin became a registered member 1 year, 4 months ago
-
Hi there Robin and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.
Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…
-
Thank you Leah!
-
Welcome, Robin! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the forums.…[Read more]
-