Many years ago I visited an optometrist in LA who had ALS. He was totally locked in, couldn’t move his eyes, and used a lie detector in order to communicate.
He had invented an incredibly clever apparatus for himself- it was a special pair of eyeglasses, with a rounded, curved wire that came out, and fit in along one eyelid. It gently held his eyelid open in a naturally position. (They were especially designed for him…) He had two pairs- one for his right eye, and one for his left eye. The other eye would be taped down, and he used eye drops frequently…
(Hope this makes sense)
Margaret
Margaret Cotts Assistive Technology Specialist
Low Tech Solutions Low Tech Communication Aids
Store: store.lowtechsolutions.org
Resource: lowtechsolutions.org
Phone: (510) 681-3639 | Fax: (510) 842-1748
From: xxxxxx@alsa.simplelists.com [mailto:xxxxxx@alsa.simplelists.com] On Behalf Of Alisa Brownlee
Sent: Tuesday, October 15, 2013 12:57 PM
To: xxxxxx@alsa.simplelists.com
Subject: RE: Eye Care for Eye Trackers-taping eyes open
Agreed!! I was hoping the family wasn’t doing that. It’s hard to dissuade families from doing this because they want the person to have open eyes, but as you said, it is so dangerous.
Alisa
Alisa Brownlee, ATP
Assistive Technology Specialist
ALS (Lou Gehrig’s Disease) Association, National Office and Greater Philadelphia Chapter
Conference Chair, RESNA 2014 Convention
215-631-1877
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RESNA’s 2014 Conference is “Racing Towards Excellence in Assistive Technology”
June 11-15, 2014—JW Marriott Indianapolis, IN
From: xxxxxx@alsa.simplelists.com [mailto:xxxxxx@alsa.simplelists.com] On Behalf Of Amy Roman
Sent: Tuesday, October 15, 2013 3:47 PM
To: xxxxxx@alsa.simplelists.com
Subject: Re: Eye Care for Eye Trackers-taping eyes open
Hi Alisa,
No they are not holding the eye open with tape. The only time a patient of mine's family did tape her eyes open, the pALS became irreversibly blind from the ulceration that resulted. Horror!!!! It was early in my career and I don't know if I would have known, had they told me, that this is a dangerous thing to do. I hope I would have intuited it. Still makes my knees weak to think of it. Glad you mentioned this. Huge no-no even with eye drop application.
Sincerely,
Amy Roman, MS, CCC-SLP
Augmentative Communication Specialist
AmyandpALS.Com
Forbes Norris ALS Research and Treatment Center
2324 Sacramento Street
San Francisco, CA 94115
Cell (415)518-0592
Fax (415)600-3778
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From: Alisa Brownlee <xxxxxx@alsa-national.org>
To: "xxxxxx@alsa.simplelists.com" <xxxxxx@alsa.simplelists.com>
Sent: Tuesday, October 15, 2013 9:19 AM
Subject: RE: Eye Care for Eye Trackers
Is the family trying to keep the lid open with tape?
Alisa
Alisa Brownlee, ATP
Assistive Technology Specialist
ALS (Lou Gehrig's Disease) Association, National Office and Greater Philadelphia Chapter
Conference Chair, RESNA 2014 Convention
215-631-1877
Follow me on Twitter: @alsassistivetec
Facebook: Alisa Brownlee ALS
Pinterest: Alisa Brownlee
Mark you calendars!
RESNA's 2014 Conference is "Racing Towards Excellence in Assistive Technology"
June 11-15, 2014-JW Marriott Indianapolis, IN
http://www.resna.org
-----Original Message-----
From: xxxxxx@alsa.simplelists.com [mailto:xxxxxx@alsa.simplelists.com] On Behalf Of Ann Hoffmann
Sent: Tuesday, October 15, 2013 11:01 AM
To: xxxxxx@alsa.simplelists.com
Subject: RE: Eye Care for Eye Trackers
Hi Amy,
Ouch! Even just taking a break from eye gaze could be healthy for healing to occur and using a back up accessing method.
Just an idea, has this person seen a Neuro-Ophthalmologist?
Ann
Speech-Language Pathologist Lead
Ann Hoffmann| The ALS Association Minnesota/North Dakota/South Dakota Chapter Program Coordinator for the Hrbek-Sing Communication and Assistive Device Program | PH: 763-520-0445 | Fax: 763-230-1992| Courage Kenny Rehabilitation Institute, part of Allina Health | Mail Route: 78003, 3915 Golden Valley Road | MPLS, Minnesota 55422 xxxxxx@CourageCenter.org | CourageCenter.org
-----Original Message-----
From: xxxxxx@alsa.simplelists.com [mailto:xxxxxx@alsa.simplelists.com] On Behalf Of Amy Roman
Sent: Monday, October 14, 2013 6:13 PM
To: xxxxxx@alsa.simplelists.com
Subject: Eye Care for Eye Trackers
Hi,
I'm working with someone who has been eye tracking for years. She uses LC and EyeMax. She is starting to have regular abrasions of the eye which causes lid to close. Here are the things we have tried and I was wondering if anyone had any other ideas.
Patch worn on eye that is having the abrasions Cold (refrigerated) eye moisturizing drops Eye moisturizing gel at night Topical antibiotics Cold compresses Eye rest with closed eyes More frequent volitional blinking
Sincerely,
Amy Roman, MS, CCC-SLP
Augmentative Communication Specialist
AmyandpALS.Com
Forbes Norris ALS Research and Treatment Center
2324 Sacramento Street
San Francisco, CA 94115
Cell (415)518-0592
Fax (415)600-3778
CONFIDENTIAL OR PRIVILEGED: This communication contains information intended only for the use of the individuals to whom it is addressed and may contain information that is privileged, confidential or exempt from other disclosure under applicable law. If you are not the intended recipient, you are notified that any disclosure, printing, copying, distribution or use of the contents is prohibited. If you have received this in error, please notify the sender immediately by telephone or by returning it by reply email and then permanently deleting the communication from your system.
Thank you.
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