I am new to Ben's Friends and will be moderating on the Occularpharyngeal Muscular Dystrophy website. OPMD is a rare form of muscular dystrophy that causes ptosis (drooping eyelids) and dysphagia (weakness of the swallowing muscles). Most people end up with some degree of limg-girdle weakness, as well.
I have had my eyelids lifted twice and I am in the process of doing a swallowing test and endoscopy in preparation for a throat stretching procedure. This will hopefully help with food that won't go down and gets stuck in my throat all of the time.
It is nice to see such an active site and so many people with so much to share! I look forward to sharing with each of you; although our diseases are different, we share many similar challenges with leg and arm weakness and mobility issues. I'm always looking for new ideas!
I am 59 years old and have Occularpharyngeal Muscular Dystrophy. A real mouthful, right? lol
While difficulty swallowing and drooping eyelids are the trademark symptoms of OPMD, there is also weakness in the limbs. I can't climb stairs any more and it is kind of a pain to have to research the venues for anything we are invited to. Nothing worse than arriving at a dinner, reception or wedding and finding out that you can't get in!
I went on disability in December, 2012. I tried a part time job recently, and it lasted for four months I didn't realize how difficult it would be to return to work and it caused so much fatigue that I had to quit.
I stay busy with my passion for reading, drawing and my newfound hobby - genealogy. I have loads of small projects going on at any given time, so if I get bored I swap projects.
I have four stepchildren; all grown and on their own now. My two Australian Shepherds are my constant companions, and I have a wonderful husband, too. He is my ever-patient help mate and I don't know what I would do without him, as he is physically fit and able and can do the things around the house that I can no longer do.
I'm glad to be here and look forward to getting to know everyone.