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Posted by: TonyLan ® 02/20/2013, 01:05:40 |
Hi,
For the past 12 years I have suffered from Apraxia of the eyelids and Blepharospasm and now find reading books or watching TV a bit of a trial. Lately I have habitually visited a friend of mine and returned home in the dark with the aid of a small torch. During these returns I have found that my symptoms are in abeyance so it occurred to me that I might try to re-create the same conditions while watching TV which I duly did. I bought a pair of swim goggles and painted them black to block out any light leaving the lenses clear. Over the lenses I glued 2 disks of black paper with a small hole punched in each. Not very elegant but it was successful and I was able to keep my eyes open nearly all the time that I used them for watching TV. Reading a book proved to be more difficult but only due to the fact that the book was closer than the TV which resulted in the two apertures showing separately. My eyes remained open but I was only able to read thru one eye by dint of scanning along the line of the book. The big disadvantage was that it was so uncomfortable to wear them since I’d had to dispense with the soft rubber eyepieces. I could wish for a more comfortable way of blocking out the light and also some way of adjusting the distance between the apertures. Regards Tony Lanning
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Posted by: liz in uk ® 02/20/2013, 05:03:02 |
Thanks for sharing that tip Tony - will pass it on to our support group which meets next week. We're going to discuss coping strategies so that one might well be added to the list! Bit of a problem though I should imagine if you need prescription lenses to either watch tv or read as I wouldn't think the goggles would fit over a pair of glasses. I wonder if pinhole glasses would have the same effect? But they wouldn't block out as much of the light as your modified goggles. Liz in UK |
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Posted by: lisao ® 02/20/2013, 07:29:02 |
That is fascinating! I am really impressed that you thought to recreate those conditions and that it worked! What a very odd disorder this is ... Suggestion: I recently posted that I finally got some ski goggles for biking in cold, windy weather, and that they really helped and were amazingly comfortable. I wonder if you could use those. They have a big plastic shield across both eyes (eyes are not separated). You could cover most of the shield with black duct tape to block out the light, leaving a thin strip across the area where your eyes are. Then you could use electrical tape (black, good for blocking light, but easier than duct tape to peel off) to block off the parts of the strip over your eyes as needed for the task. It would be easy to move the electrical tape around for different tasks. Or, you could create two pairs of goggles, one for TV, one for reading? Did you take out the spongy stuff because light was getting through there? Seems like there must be a way to cover that, too, so you don't have to remove it. Again, tape might work. Or dark fabric?
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Posted by: judith k ® 02/20/2013, 16:06:16 |
Hi,
That's very inventive of you! You didn't describe in what way watching TV has become a bit of a trial,
Early in my blepharospasm, I often had a great deal of difficulty (irritation, eyes blinking and closing, a strong sense of dis-ease, etc.) when watching TV.
Good luck! Judith K
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Posted by: noonsmom ® 02/20/2013, 18:52:40 |
Judith et al - I use my 55% FL$1 glasses while watching tv and STILL have blinking problems. I also tried leaning back, as some people do, and it doesn't help all that much. I do watch tv in a darkened room - that is helpful. Funny, I'm one of those people who can drive with little difficulty but tv is my nemesis. I also sometimes have problems in the theatre, but not if I'm looking down from the balcony. Reading is not all that bad. I use a Kindle and set it to a high level of print font. We all have our little tricks, eh? Marcia |
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Posted by: TonyLan ® 02/21/2013, 00:35:27 |
Hi Judith, My eyes keep slamming shut and I miss half the show. I too get a strong sense of dis-ease, restlessness as soon as the TV goes on. Not so bad if its something I'm really interested in.
What are FL41 lenses? cheers Tony |
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Posted by: judith k ® 02/21/2013, 02:45:33 |
Hi,
FL41 is a coating that can be applied to lenses; it helps with blepharospasm, migraine, etc. Blocks the blue light that is particularly irritating, useful in the sunlight, and (when my eyes are feeling particularly sensitive) I find them especially helpful for fluorescent lights and TV. I have mailed glasses to the Moran Eye Center, connected with the University of Utah, and they have applied the coating for $35. I've pasted below a link to results of a study about FL41s (some of the researchers spoke at the 2010 conference in Salt Lake City. I think a video of a presentation must be on this board). If you do a search on the board for FL41, you'll see there has been a lot of discussion. Link about study: http://www.ncbi.nlm.nih.gov/pubmed/19410958 If you search for FL41 Moran Eye Center, you will get a lot of information.
Judith K |
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Posted by: Susi ® 02/20/2013, 21:51:34 |
My problem with watching tv is not so much about the glare from the screen but from the constant movement on the screen. They flash from scene to scene too quickly for my eyes to focus on anything. It's really awful. I used to be able to watch movies as long as I had subtitles to focus on but now even that is getting difficult for me. Reading is still ok most of the time but I have had some problems lately. I can't imagine having to give up reading. I can't do audio books. I have the same effect with having to listen to someone speak for any length of time. My brain shuts down and my eyes go crazy.
Susi |
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Posted by: TonyLan ® 02/21/2013, 00:04:09 |
Hi Liz in UK, I find that ones prescription glasses could fit over the top of the goggles |
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Posted by: floweringrid ® 02/21/2013, 07:19:15 |
hi all sufferers ,I found the only way to relax to watch tv,(apart from using duck tape to keep my eyes open)is just laying down on my side withe one hand or fingers resting on my let temple, in a dimly lit room. As soon as I sit up again ,my eyes are off again with their damn spasming. I feel like one of those blinking dolls, except the opposite way round.Duck tape does help, but I only use it indoors , especially when cooking, or just when I have a bad day. Has any one tried loop-de-loop glasses? My neurologist said I should ask my optician ,but haven't as yet.
UK blinker(LANCASHIRE) Modified by floweringrid at Thu, Feb 21, 2013, 07:23:51 |
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Posted by: lastradioman ® 03/03/2013, 11:41:33 |
Tony and Group,
Very interesting posts. We have some inquiring, scientific minds here on the list - and people willing to share their coping strategies. It is also somewhat comforting (for me, anyway) to see that many of us have the same issues - TV coping strategies such as leaning back; reading strategies; finding it easier to walk at night; etc.
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Posted by: judith k ® 03/03/2013, 14:02:20 |
For those who've mentioned leaning back while watching TV, do your eyes close more?
I mean, in that respect is it comparable to looking downwards? That's why, if I'm in a movie theater, I sit far enough back so that I can look a little downwards; if I'm in a hilly place, it's much more comfortable looking downwards—when going downhill—than it is going upwards; the same with reading or doing other downwards-looking work. Looking downwards, less of the ocular surface is exposed and subject to drying-out, breezes, blowing air, dust, and other irritants.
Have you tried FL41 lenses (or a coating on old glasses, which is about $35 plus postage, if you do this by mail)? As we can see from this thread, it doesn't help everyone!
Judith K Modified by judith k at Sun, Mar 03, 2013, 14:04:02 |
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