Experiences with Retinal Degeneration
Unexpected Detour By Kathy

My Name is Kathy. My husband Ted has Rp. We have been married for 22 years now. I knew when we married he had this disease. I thought I understood what it meant to go blind at the time. I have come to find out it is a lot more than I had anticipated and disability came a lot sooner than I expected.

We were married in November of 1978 in Central Illinois. At the time my husband was 22 and still driving, life seemed normal. About 3 years latter we had our first child. When she was six weeks old Ted had his yearly eye doctors appointment. We were excited to take the baby and show her off. At the office Ted had the same battery of test as usual. During the visit with the doctor he showed us Tedís fields. We had seem these before and really never gave them any thought. He explained again how little Ted saw. As I remember it his field of vision was less than 6% at this time. This well qualified Ted to be considered legally blind. The doctor, to our surprise suggested that with this new baby it was time to make some serious decisions about Ted and his driving. So this was the first day of Ted having to admit that the RP was actually taking control of his life. The doctor filed the appropriate paper work and Ted was now considered Legally Blind.

Ted was employed by the United States Postal Service at the time. We chose not to tell them of this new development. Ted had a walking route and no one would ever be the wiser. One Christmas season those in charge decided that they could cut the people needed to deliver in half for Christmas Eve and News Eve. This meant for Ted he would receive Christmas Eve off but would have to deliver 2 routes on New Years Eve in a vehicle. That was a problem because Ted had no license. He had no chose but to tell them of his blindness. It came as a shock to those in charge. They immediately took his route away from him and put him inside, sorting mail.

Ted sorted mail up until 1990 . Everything seemed fine at work. They even had assigned Ted a fire extinguisher. If a fire were to break out Ted was to run to the extinguisher and fight the fire. We thought this was a little odd but didnít complain, hoping there would be no fire. As time progressed Ted began to have more trouble getting around the Post Office. He could do his job but it was hard getting from place to place. It was at this time those in charge began to put the pressure on. Ted had taking the eye test required to work on the LSM machine several times. He flunked it every time. He wanted to be on the LSM machine. This would mean that he would not be walking around much at all. He just could not pass the test. The powers that be demanded that he take the test again. It seemed they were planning to use this against him to push him into retirement. He fought taking the test with the help of the Union as long as he could. He eventually did have to take the test and of course failed it again. He was with in days out on disability.

Disability has not been bad. Ted receives a pension from the Post Office. He also had a policy that covered a portion of his salary. At the time we bought the police we wondered if they would actually sell to Ted. They did with a 2 year rider. This meant he could not lose his job due to his sight for 2 years. Luckily he just made the 2 year mark.

After retirement Ted participated in the Double Blind Study in Boston with Dr. Berson. This seemed like a good idea at the time. We figured he had a good chance of getting the right drug and maybe it would be helpful. Ted participated in this study for over 5 years. At the conclusion we found that he had been on the vitamin E, not the vitamin A as we had hoped.

Ted has been out on disability now for 10 years. I am a stay at home mom. Since his disability we have adopted 5 children and had another baby. We manage just fine. We live on 33 acres and enjoy being out of the city. It seems now that every day Ted is a little blinder. Things are getting increasing more difficult for him. We are learning to adjust. Some days are more difficult than others.

Our youngest daughter is 3 years old now. She has always seemed peculiar to us but we could never put our finger on just what was different about her. Recently, I all of a sudden turned to Ted and said, "Do you think she has night blindness?". This was the first time we realized that there was something wrong with her eyes. We had just never considered this. We have not had to deal with this in our oldest daughter, she has showed no signs of RP at all. We have taken our youngest to the eye doctor. She is now in glasses. They seem to help. There are still more doctors she will need to see. There is talk of doing a ERG on her in the future. Only time will tell how things will progress with her. We have not told her anything. She is much too young for that. I must say, she does seem to know that something is up. I guess we will just take one day at a time. Nothing we do will change the inevitable. We pray for a miracle, we hope for a break through in the medical field. But until then we will go on living life, enjoying what we have.

If you would like to have your story listed, please email me at rpmail@jwen.com

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