I have been living with OPMD for 26 years. I am a 76 year old male, and there are not many of us living with this challenging condition. I was officially diagnosed via gene mapping.
My progression began with my eyes; specifically ptosis. If you had seen me in my 50s, you would have thought I was blind.
Next, walking became very difficult; the resistance felt like trying to walk through a swimming pool. My first assistive device was a pair of dual forearm crutches.
Shortly after, I had bilateral sling surgery for my eyes, followed by prism glasses because my eyes no longer tracked together.
However, after three severe falls resulting in a damaged rotator cuff, a shattered hip, and a face plant I had to give up the forearm crutches. I transitioned to using a walker and a wheelchair as my legs continued to weaken, eventually reaching a point where I could only stand and pivot.
After another fall resulted in a broken leg, I learned to use a slide board. Today, I am unable to stand and am fully dependent on a power chair and slide board.
Swallowing had been less of an issue until recently, when being unable to swallow my own saliva finally caught up with me. I was hospitalized with aspiration pneumonia and became so weak that I required a Hoyer lift.
Fortunately, I have since recovered enough strength to use the slide board again.
Despite these challenges, I still enjoy going to my local senior center and spending time with friends.
My hope is that future advances in medical research will bring better solutions for others facing this condition.