Living with OPMD

Vision Problems

#1

OK, I’m sure we’re all aware of the droopy eyelids associated with this disease. I had a levator advancement done in 2014, which helped lift the shades for a few years, but they’re drooping again, and I’m not so sure I want to engage in a frontalis sling yet. Has anyone here had that done?
I also experience fatigue in the extraocular muscles, which move the eyeballs up, down, sideways, and diagonally. Because individual muscles may fatigue to the point of paresis, I experience transient, assymetrical opthalmoplegia, which results in blurring of vision. It goes away with rest and closed eyes. It makes computer work difficult, though reading text or music - linear eye movements - are less affected.
Anyone else experience this? What accommodations have you made to mitigate this?
Dean

#2

Dean,

I too am experiencing all of kinds of vision issues. I feel that it has contributed to my Vertigo. It takes a lot of coordination of muscles, to align both eyes on a target.

My workaround is to use one eye (left) for a lot of activities. I naturally use my right more because of the droopiness of the left. I want to use the muscles equally on each side. When I can, I shut both eyes. For instance, tieing shoes, I can do that with my eyes closed.

At signal lights, I close my right eye to give it a break. For now, this is sort of working. I am worried that muscles will continue to fatigue and I won’t have any workarounds.

I am 59. My mother was disabled at 60. She would sit in her chair the entire day and do nothing. She never walked, so she did not experience the soreness in the legs, she could not drive, so she did not experience vertigo that I am, she did not work, so she did not stare at a screen all day. My uncles all had to stop working because of the disability. I am trying not to go there as long as I can.

#3

Dean,
Have you heard of our FB Support Group? We are almost 800 members strong. You should consider joining!

#4

I had frontal sling surgery a year ago and it is so much better. My sister also has this disease and she had the lid lift her eyes are really bad . If I had the choice of sling surgery I would do it again because I’m doing good with it and Iwas lucky to have a great doctor.