My Experience with RP

By Diane Krek

I had received this article from a relative that was published recently in the local newspaper. My relative and friends are aware of my prognosis, which is Retinitis pigmentosa (RP).

This article is interesting because it describes how our eye functions through the retina to form an image as well as how this disease can destroy or distort your vision. The writer also interviewed a woman that is dealing with RP in a different form, and how she copes with the disease.

http://www.pressdisplay.com/pressdisplay/showarticle.aspx?article=efec2773-b72f-4d95-a561-8c8a03b22231&key=3oIPoe1ka%2bfF1M8ipufnnA%3d%3d&issue=13132015052400000000001001

I was diagnosed with RP in my mid-life in the summer of 1990. I am fortunate that my disease is slowly affecting my vision. There are 3 types of this disease, and some stages advance more quickly than others. My younger brother, who is deceased, was also diagnosed with RP. His vision loss decreased more rapidly compared to mine.

My RP specialist informed me that there is no cure for this disease at this time, but there are many research studies going on every day. I will know when to give up driving when it gets too difficult to see. My job was only 2 miles from my home so it was easy to commute for a while. I was informed later of a state rehabilitation group to train you in using aided devices such as magnifiers, computer magnification software programs, reading glasses, CCTV, and white cane mobility training. It was embarrassing to expose these devices at work in fear that someone would tell me that I shouldn’t be working there. I needed these devices to continue to work and HR helped me further. I extended my work for 5 more years!

I gave up driving a few years ago when I could not see other cars around me. I found a transportation company and realized it was very inconvenient. I had no one to share a ride so close to work. My husband was able to help at times but it was not a solution. A few years later, my vision decreased further to a point when I had to decline my job. My position was to scan legal documents and type the required data into the scanning program. I could not see the difference between numbers and letters. I wore special reading glasses and used a special software program (ZoomText) to enlarge the image on the monitor screen, but it slowed my scanning production. I could not make the daily scanned quota required by my employer. The scanned documents also had to be clear of lines, dust specks, or streaks.
My vision was getting more blurry, bleached out, and distorted. There were no other positions available because everything is computer-based. I made too many mistakes to continue my work.

I have met many persons with RP and we all have various vision impairments. No two persons share the same vision. We are not alone, and it is great to reach out to help encourage each other; to learn to be more independent and productive. Today, I enjoy cooking, gardening, play my accordion, and painting. What’s your “blog”?

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