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Paynesville Press - July 24,2002

Going Blind - Local family lives with eye disease

By Bonnie Jo Hanson

Deb Nehowig Deb Nehowig has always known she would go blind. Even in her earliest years, she knew she and her brother shared with their father the disease that could gradually rob them all of their sight.

Deb in her golf cart which she is allowed to drive on city streets.

By the time she was in her teens, her father had lost so much of his sight that he had to give up driving, and Nehowig said she grew up with the knowledge that she would follow in his footsteps.

Nehowig never had effective night vision and she started to notice the loss of her peripheral vision while she was in her late teens. Since then, darkness has gradually consumed much of her field of vision.

Nehowig has retinitis pigmentosa (RP), a hereditary eye disease. It's a rare disease that affects about 100,000 people in the United States, according to the Johns Hopkins School of Public Health.

There is no known cure for the disease, and no known way to stop degeneration of the retina in affected people, although a therapy of vitamin A may be able to slow progression, but it can also cause serious side effects.

Most people can see left and right, and up and down while holding their eyes straight ahead, Nehowig said. A person with RP gradually loses their peripheral vision.

People with normal vision have a field of vision of 180 degrees. Nehowig's field of vision is 10 degrees. Legal blindness is determined at 20 degrees. Nehowig's father has a three degree field of vision. For all practical purposes he is blind as he only sees a pinpoint of light.

Nehowig has had to make a lot of lifestyle changes because of her disease. Because they can't see out of the corners of their eyes, people with RP tend to trip over things, and everyday activities become more and more difficult as the disease progresses.

She is still able to work as a substitute teacher and gymnastics coach for PAHS and she hopes to continue coaching until her daughter finishes high school. Coaching or playing anything that involves a ball, like basketball, is impossible now, although she's still able to play golf with the help of her friends, and she does, almost every day.

Not being able to drive has been one of Nehowig's largest obstacles to overcome. When she gave up her driver's license in 1999, it felt like she was giving up her independence. In fact, the family moved from the country into Paynesville three years ago because Nehowig knew she would be more mobile in town.

Imagine not being able to drive yourself to the store, or not being able to take your three kids to their activities or to a movie. "I still miss it, especially on those first spring days when you can drive with your window down listening to the radio," she said.

She probably should have given up her license sooner than she did, she said, but along with the independence it provided, driving was one way she could hold onto the sighted world longer.

She has permission to drive a golf cart in Paynesville, so she can still get groceries by herself and go to school functions or to work, but in the winter she can't even get around that way.

She said her friends and her husband Kyle are great at shuttling her around when she wants to go out of town. She learned how to use the Tri-Cap bus that goes from Paynesville to St. Cloud each week and that has given her a little bit of much needed independence.

RP is hard on marriages and families. Nehowig's husband Kyle is very supportive and she considers herself one of the lucky ones. "With three kids on the go all of the time and only one person to drive, sometimes it gets overwhelming for him, but he rarely complains. If he does I tell him 'O.K. I'll drive' and that usually ends the discussion." she said.

Like giving up driving, Nehowig is reluctant to start using a cane, but thinks she will have to soon. The cane would serve two purposes, to help her feel obstacles while she walks and alert others around her that she is visually impaired.

"In places with a lot of obstacles but few people, I look down a lot so I don't trip over things. If I used a cane, it would keep me looking straight ahead while I let the cane do the work for me," she explained. According to Nehowig, people have a hard time understanding how she can read a sign or see a land mark that is in her field of vision, while legally blind.

To get an idea of restricted peripheral vision, take two paper towel rolls, hold them up to your eyes and look through them like a pair of binoculars. Now try to go about some of your daily life with only that much vision. Imagine what it would be like to drive with vision like that.

While growing up with RP, Nehowig's family neither talked about the disease with each other nor discussed it with others. Her best friend from high school didn't even know about her disease until their 20-year class reunion.

A few years ago Nehowig got involved with a group of people she met through an on line support group which has helped her be much more open about her disease. She thinks her involvement will help her sons who also have RP.

In mid-July the National RP Get Together had its annual two-day outing in Minnesota. For one day, the Nehowigs took 15 members of the group to a cabin near Glenwood.

At one point, nine people and seven guide dogs took a ride on a pontoon. While members of the group enjoyed tubing, getting the rope back to visually challenged people was difficult. One young lady could neither see the rope nor hear Kyle's instructions because she is also deaf, but eventually everything worked out.

Just as her father passed the disease on to her, Nehowig passed the disease on to her sons Kohl, 12, and Kody, 11. Her sons have both lost their night vision. The Nehowig's daughter Kacy, 13, does not have the disease.

Michael Veeck, a co-owner of the Saint Paul Saints, also has a daughter with RP and he has offered to help raise funds for the purchase of night vision goggles for the boys.

What's worse than losing your vision? Watching your children lose theirs. "I would gladly give up what sight I have left to protect my sons from this disease," she said.

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