Living with OPMD

My Story (Jersey Girl)

#1

Jersey Girl
65 posts
January 28, 2015 5:20 PM MST

Hello everyone. I was diagnosed about ten years ago. My mom and her brother had OPMD, which they inherited from my grandmother.

While my grandmother had classic symptoms, she passed away in 1976 and I don’t believe anyone even knew about OPMD at that time.

My mother was diagnosed by a knowledgable neurologist in New York City. the mid 90’s

I’ve had two procedures on my eyelids and will need another one soon. My dysphagia has become bothersome and I am going to ask my neurologist about having my throat stretched in the near future.

I’m able to walk OK on a flat surface but climbing stairs is extremely difficult; even if I have two handrails to pull myself up with.

I love to swim, because its great exercise and I am “free” of any leg weakness when I’m in the water!

My husband and I plan to retire to a no stairs/barriers home. He works full time; I am on disability and have a small part time job. I did not work for two years after I started receiving disabiliity and started my part time job in the beginnig of November,2014. While I enjoy it, I am beginning to wonder whether I will be able to keep the job or not. I can perform my duties (not physical) OK, but I’m very fatigued when I get home and don’t seemto be able to do much besides sit in a chair and recuperate from the day.

I’d love to “meet” some of the rest of you and hear your story!

purplebutterfly
3 posts
February 3, 2015 4:06 PM MST

Hello Jersey Girl

Thank you for sharing your story.

Jersey Girl
65 posts
February 4, 2015 5:05 PM MST

Thanks for reading my story, purple. I hope to get to know you more, here.

Jersey

PDP
3 posts
September 28, 2015 2:01 PM MDT

Hello Everyone,

My mother, four of her sisters and a brother suffered/suffering from OPMD, and so are some of my cousins. My mother and two of her sisters passed away in last 4-5 years. But, two of my aunts and uncle are still alive and I see them spending hours just finishing their meal. They all got OPMD from my grandmother. Most of my family who has OPMD lives in India.

I live in NJ, USA. I started experiencing OPMD symptoms 4-5 years ago. I consulted with couple of neurologists in NJ srea, but they had very little to offer. Recently I saw a neurologist, who had other patients with OPMD. So, recently I got my Gne testing done and results were positive for OPMD.

I have difficulty swallowing (which is not very bad right now) and a droopy eyelid. I am okay with the swallowing when I am at home or alone, but get very consious in a public place. My nurologists told me about the new drug from BioPlat Pharma from Israel, but not sure how that will help us at this stage. May be our kids could get this condition too, which we can not do anything about. But if they have it, then he advised that that can be stopped being passed on to the next generation.

I still have a lot of years to retire and hoping try out things to de-accelerate progression of this condition. Has anyone tried any alternative treatments?

Hoping for a cure for all of us!!

Jersey Girl
65 posts
October 13, 2015 5:16 PM MDT

Hi PDP,

There is supposedly a gene silencing “treatment” on the way, too, in the next few years.

Other than that, I don’t think we have any choices right now besides eyelid surgery and throat dillatation or botox injections. :frowning:

JG

PDP
3 posts
October 15, 2015 9:52 AM MDT

Thanks for the update Jersey Girl!!