Testimonial – Tony O (OPMD Patient)​

Photo of Tony before OPMD diagnosis
Before
Photo of Tony after OPMD diagnosis
After

Tony O.
Born 1940, Diagnosed at 58 years

Before my OPMD diagnosis and in the early years afterwards, I enjoyed an active life: I exercised daily, ran 5Ks, played racquet ball, golfed four or five times a week, and lifted weights. I enjoyed spending leisure time with my wife and our children and grandchildren. We skied, hiked, camped, fished, and vacationed in the mountains and on beaches. My wife and I danced frequently and traveled extensively. In addition to my career as a counselor, I enjoyed taking care of my home yardwork, working on our small farm, and maintaining our apartments.

OPMD has affected many of my daily activities, and each year life has become increasingly more difficult. Simple daily activities like sleeping, toileting, dressing, showering, eating, throwing the trash, and even changing light bulbs present increasing problems. Work tasks at home which gave me joy are now impossible. Even visiting our children has become strenuous as it becomes more difficult to fly—maneuvering through the airport, getting on and off the plane, going to the restroom on the plane and carrying all that I need to have on a daily basis. Some activities which I took up early in the diagnosis, like bike riding and swimming, have been abandoned because of the exhaustion and loss of balance which are now part of my life.

I feel blessed to have a positive attitude and to be able to afford adaptations and modifications which enable me to continue living a satisfying life. I have tried to meet each new challenge with a solution which does not totally compensate for the loss but which allows me to continue to move forward. I have been able to improve my vision with the silicone eyelid surgery. In addition, I have the use of a lift chair, a ramp going into the house, an electric scooter for long distance walks, a walker with a seat for covering shorter distances, an electric adjustable bed, raised toilets and support bars in the bathroom. I purchased a Vitamix to purée food and step-in shoes and diabetic socks to help make eating and dressing a little easier.

Honestly, I feel OPMD has robbed me of the life that I planned for and that I envisioned. Although I took good care of my health, exercised, ate healthfully, and saved for retirement, my daily life is a struggle. I hate not being independent and don’t want to become more of a burden. I worry about my future and the future of my family. My daily prayer is that my children and grandchildren are not diagnosed with this incredibly debilitating disease.