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Converted from paper version of the Broad Ripple Gazette (v10n20)
Gettin' Ripped in Ripple - A Cure is in Sight - by Laura Minor
posted: Oct. 11, 2013

Gettin' Ripped in Ripple header

A Cure is in Sight

Several years ago when I was renting space for personal training in the basement of a massage studio in Broad Ripple, a lovely couple named Mike and Margo Schmidt became clients. After several months, Mike asked me if my mother, who is a travel agent, could book him a flight to Boston and come back to Indianapolis the very same day. Well, as I can tend to be a bit nosey, I asked him why he was going just for the day. He replied that he was going to Massachusetts Eye Institute because he was in a research study for a vision disorder. He told me the name of the condition and kind of played it off like it was no big deal. . . so of course I went home and Googled it to see what it was all about.
The condition he said was Retinitis Pigmentosa. As I searched this disease all over the internet an overwhelming feeling of sadness came over me as I realized that it can be a quite serious and debilitating condition. As stated on the medicine.net website:

Retinitis pigmentosa is the most common of a group of hereditary progressive retinal degenerations or dystrophies. There is considerable variation and overlap among the various forms of retinitis pigmentosa. Common to all of them is progressive degeneration of the retina, specifically of the light receptors, known as the rods and cones. The rods of the retina are involved earlier in the course of the disease, and cone deterioration occurs later. In this progressive degeneration of the retina, the peripheral vision slowly constricts and central vision is usually retained until late in the disease. Since retinitis pigmentosa begins as rod degeneration, the patient first notices increasing difficulty in night vision, followed by difficulty seeing in the periphery. Slowly progressive constriction of the visual field leads to tunnel vision. A small area of central vision in both eyes usually persists for years. Generally night precedes tunnel vision by years or even decades. Total blindness eventually ensues in most cases. The age of appearance of legal blindness ranges from as early as childhood to as late as the 40s.
So, what this is basically saying is that a person with RP will gradually over time lose his/her peripheral vision until most often they become blind. Imagine each of your eye balls as an enormous drinking straw. Over, time, the straw shrinks and shrinks until there is complete darkness. And sadly, although there is some very promising research for RP there is no cure at this time. However there are several fundraisers such as the annual VisionWalk (held nationally including Indianapolis) that raises money to find a cure.
In 2011, Mike and Margo posted a video on YouTube about his specific story and it is very touching. He was diagnosed in 1994 and described his initial denial which turned to anger and depression. After he met Margo in 2000, and later getting married and having two daughters, he changed his perspective on his "affliction". Here are a few quotes in his own words:

Mike, Margo, Molly and Makena Schmidt
Mike, Margo, Molly and Makena Schmidt

"A lot of it is embarrassment. When you're out in public and you trip over a chair of fall down a couple of steps. I've been asked to leave a restaurant before for being drunk when I hadn't had anything to drink because I was bumping into stuff trying to get to the bathroom. So, it makes you clumsy and it's just really frustrating. You're slowly losing your vision and you don't know when. And that's the scary part. . . you don't know when. You're told you are going to go blind at some point in your life. Well, that's hard to deal with. How do you plan? Should I start looking for a new job? When will I stop driving? What do I do? It's difficult to deal with when you don't have a timetable"
"There's an old cliché that say you gotta play the hand you're dealt. When I was first dealt my hand, I looked at the one card, RP, and it was. . . a pretty bad card. And, for 15 years all I did was think about that card and what am I going to do and anger and all of the emotions. And as I have gotten older and hopefully a little bit wiser, I decided in poker you get five cards. I had one really bad card and gave up on the other ones. I looked at the other cards: I've got a wife that loves and supports me more than I could ever thank her for, I've got two healthy beautiful little girls, I've got a family that does and offers to support me, and I've got a set of friends that would do anything for me. So, I like my hand. . . I've got a pretty good hand. And I wouldn't trade it for anything in the world and I'm very fortunate."
My friends Mike and Margo are the Indy VisionWalk co-chairs and four years ago, I was fortunate enough to have them ask me to "warm up" the participants before they head out on the walk. I absolutely love doing it and it is such a great event! Although I make a fool of myself by coercing people into doing jumping jacks and squats while they are eating their pre-walk bagel. . . .I look so forward to it each year. It is great to see how much support it receives and for such a great cause. And it is also touching to see the community of those with RP coming together as it is quite a rare disease. Young kids all the way up to the elderly were present. One mother said that it was her son's favorite day of the year "even over Christmas". If you would like to donate to the VisionWalk to support RP research for a cure, go to: www.visionwalk.org click on Indianapolis and then "Make a Gift". And if you do, myself, Mike and Margo Schmidt and everyone who has or is affected by RP thank you 😄



Laura Minor owner and operator of So.Be.Fit. Personal Training and Fitness studio located at 54th and the Monon. She is passionate about teaching others how to "FIT" exercise and physical activity into their daily lives, and have fun while doing so! Visit her website at www.sobefitindy.com or e-mail laura@BroadRippleGazette.com




laura@broadripplegazette.com
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