We are now cross training moderators to work on more than one community or taking on new recruits and training them on a group similar to their own.
Writes-A-Lot comes to us from a new group, OPMD (Oculopharyngal Muscular Dystrophy).
http://mda.org/disease/oculopharyngeal-muscular-dystrophy/diagnosis
Please say hello and welcome her, and hopefully she will tell us all more about herself.
Writes-A-Lot welcome to the group, and BTW, you have messages in your inbox!
Welcome to our community Writes-A-Lot!
Hi all and new moderator.
l have just gotten a new neuro. Uped my gabapentin to 900mg a day from 200. We shall see what this does.
Fatigue has settled in real bad lately. l am not sure what to make of it.
Working with GenDX to see if l can get some genetic testing done.
~Tami
Hi Tami,
I hope the higher med dose does the trick, and that you can soon feel free of the fatigue.
I am always hopeful of a treatment, better yet a cure for all of you.
Sending my best,
SK
Thank you, EVERYONE, for the welcome!
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!
Writes-A-Lot
Hi SK, and thanks for the welcome!
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.
Writes-A-Lot
You sound like a very together lady! My husband is good with carpentry, but not housework! So even with occasional help, most of it still falls here.
Ben's Friends has become my project now! I spend a lot of time on the various groups, but like it very much. I have met wonderful people from all over the world!