Danny W.
Diagnosed at age 56

My Mother died from complications of OPMD in 2013. When she first started having swallowing issues, she was misdiagnosed with TMJ. It took several years and many doctors to get a proper diagnosis and by that time, her brother and a sister were also diagnosed.

During my last conversation with her, while she was in Hospice, she told me she noticed one of my eyes drooping and asked me to get checked. I kept my promise that I would, and it was concluded that I also carried the mutated gene. At that point, my OPMD journey began.

I began going to the Muscular Dystrophy Clinic at Vanderbilt Hospital in Nashville where I was taught to manage my symptoms and began physical and swallowing therapy. As the disease slowly progressed, I noticed a change in my gait, had some balance issues and began to fall. I started wearing shoes that were lighter in weight which helped for a while.

Next, I began educating myself about OPMD and found a wonderful support group on Facebook and asked to join. The group consisted of Facebook administrators, family members, caregivers and medical professionals from many different countries. This great, diverse group was friendly, informative, and welcoming and has truly been a blessing for me. Four of my first cousins were also diagnosed, two of which have joined our Facebook group.

In 2016, my ptosis became pronounced to the point where I lost peripheral vision and bumped my head on things I simply didn’t see. I was referred to the Vanderbilt Eye Institute and found a doctor who had worked with OPMD patients in the past. She performed a frontalis sling surgery, and I was able to move about in the world more safely than before. Eighteen months later, my ptosis worsened. I returned for a frontalis sling adjustment and successful eyelid surgery.

My gait worsened, and I returned to physical therapy. My exercises were adjusted to match my current state. I started using a cane for balance and to prevent falling.

Swallowing certain foods become more difficult, and I began altering my diet. During this time, I continued to work and began researching ADA laws to be informed about how to ask for and receive reasonable accommodations. I requested and received LED lighting in my office, larger computer screens, a more comfortable chair and a footrest.

When Covid arrived, I began to work from home. When I was called back to work, I requested and received an adjusted work schedule as I had trouble seeing well while driving in darkness, fog, or rain. I continued to work until February 2022 when I retired.

I once read the following which spoke loudly to me and it defines how I approach and navigate my OPMD experience. “There is an invisible link between weakness and strength; ability and disability. It is our job to constantly identify that sweet spot and manage it to our advantage.” I think about this every day and have learned to pivot, adjust and learn new ways to function.

The OPMD Facebook Support Group continues to grow. There are over a thousand members now! We are organized, well-informed, tech-savvy, and supportive of each other. Our Facebook Administrators, Melissa and Becca are true heroes. They herd the cats, keep us on topic and work very hard on our behalf. The members of the OPMD support group are each on our own journey, each with varying degrees of the individual symptoms display courage, humor, and honesty.

OPMD is an adult disease, and we face it as adults. Chapter and verse, we know our future. We see our outcomes, as the older group members pass away and become mentors as new members join. We witness in person our relatives as they begin and end their journeys. We swallow a daily pill called HOPE as the pharmaceutical companies talk about clinical trials that never quite come to fruition.

Personally, I prefer to abandon hope and embrace Faith. Faith that soon, a medical team can come forward and say “We have a cure. Put your trust in us. Let’s get this fixed.”

Until that time, we have people to love, and memories to make. We adjust our plans to match our capabilities and live our lives. We wait for a cure and cross our fingers that those with children and grandchildren do not inherit the disease.

There is very little current productive research on OPMD and my understanding is that there are approximately 15,000 people worldwide that have been diagnosed. I am sure there are many more cases that have been misdiagnosed, not reported or have been chalked up to simply growing old.

Raising Awareness is a worn-out trope that has been adopted by many charities and causes. In our case raising awareness of OPMD is indeed necessary. People with OPMD have to guide their medical professionals to become informed enough to help. The OPMD population needs to advocate for ourselves. I believe it is time to show our collective strength and use social media as a megaphone.