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intro & question

Wed, 07/11/2007 - 12:48
Hello, I am new to the group. My name is Trudy and my husband has epilepsy (almost 30 years now). Most of the time he can avoid things which are triggers, but still has multiple grand mals each week, also several petites each day. Recently several of his triggers have become more sensitive. The one I am seeking help on today is a sensitivity to patterns. One example: our church is in the midst of remodeling, and have torn out the old carpet, exposing the concrete floors, with old glue stains, and patched areas which have been caulked. This causes my husband to go into seizures -to see the scattered patterns the floor makes. We have tried very dark sunglasses, and it has helped a little, but now even that doesn't seem to do the trick. The blind association said they make black out glasses out of safety glasses and paint with Krylon Fusion. Currently I lead him around while he closes his eyes in the areas where the floor is exposed. But, as I said, it is getting more sensitive, and yesterday he had troubles while riding in the car, to see the patterns on the bridge (not reflecting lights, just the cracks between panels and the weeds growing in cracks, etc). Are there other options to reduce his sensitivity other than forcing him to be blind? I read the article about fireworks (which defintiely do send him into seizures) and saw the suggestion that the pattern be less than half the visual field. Great idea and we will try to do that when possible, but I am not sure how we can apply that here, as my husband has very good peripheral vision, and even when it is off to the extreme side or bottom, it still bothers him. We would rather have some non-medicinal answers as medicine doesn't seem to do alot for him. Thanks for any suggestions!

Comments

Re: intro & question

Submitted by itsmyeviltwin on Wed, 2007-07-11 - 16:33
I honestly think if I were as sensitive as your husband, I would just always wear blackout glasses or tinted contacts all the time and resign to learn braille eventually for the times he may need it. As for me, I throw towels or jackets over my head in the car with sunlight streaming through trees, through bridge grates, etc. I have had to learn to avoid my visual/pattern and light triggers through trial and error. Good luck and my heart goes out to both of you, i do understand the frustration...perhaps others will have better suggestions.

Re: Re: intro & question

Submitted by Trudy on Mon, 2007-07-16 - 10:42
Thanks for the ideas of towel/jacket etc. We will plan to have something on hand for when it is needed. Tinted contacts are a good idea too, maybe we can look into those. I sure appreciate the time you took to respond. I contacted the Blind Commission and they told us how to make black out glasses. I then thought about the fireworks article, and how if the problem is less than half the visual space, it will help. So, we took an old pair of his prescription glasses, painted the lenses black, but left a very small slit unpainted across where the pupil would see. He could then see enough that he didn't run into people, but saw so little that he didn't have a problem with the floor hardly at all. Between old prescription and small viewing area, it was not enough to identify who people were, and it was intersting seeing him try to shake hands! Last week we had to leave before Sunday School even started, this week he was able to stay for all the service times (4+ hours), and was only slightly head-achy/dizzy/twitchy by the end of the morning. He wore cotton in his ears (packed really tight) and it blocked the sound bouncing off the concrete really well. Of course that made it almost impossible to talk to him (and with his vision blocked, he couldn't really see for me to use sign language on him either! Oh, well - he made it through services - yeah!). The sound system carried songleader & Pastor's voice enough, that he could easily hear that, so was able to enjoy the services quite well.

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