Hi all,

I personally had a patient whose family taped her eyes open when she was in the hospital so they could continue to communicate with her.  I didn't know they were doing this.  Her eyes did ulcerate and she became blind.  Perhaps there is a safe way to do this but it wouldn't be anything I would try without an eye doctor's close daily supervision.  

 

I talk to patients and their families about eye droop and decreasing eye movement abilities when we talk about end of life decisions. I mention these as the two most common reasons that people who have only eye movement may lose the ability to communicate.  

 

Many of my patients on invasive ventilation over the years have eventually lost lid or eye movement, though quite often not for years.  Once it begins though (if not before), I have come to believe, patients and their families must be counseled about the reality that they could become locked in.   Patients need to explore what they would like to have happen if family members can only perceive a simple yes response for part of the day, infrequently or never. 

 

If we have not yet developed the relationship with the family to have this conversation, I believe it is important that we discuss this possible outcome with the physician, nurse, social worker or someone who can talk to them. 

 

 We can keep people communicating for longer and longer with technology.  Brain computer interface is coming along but we are not yet able to prevent all patients from becoming eventually locked in.   It is tempting to avoid this conversation with families.  All of us prefer to talk about what we can do rather than what the limitations are.  Also, we don't have any good data currently to give families all the information they may want.  How long before this happens?  Do some people never experience this problem? 

 

I would like to hear how, if and when others have this conversation with their patients and families and about your experience with this.  Thank you.

 

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

On Tuesday, May 6, 2014 7:00 AM, "Hurtig, Richard R" <xxxxxx@uiowa.edu> wrote:

Alisa,

I would urge caution at any use of a device to keep the eyelids open, without proper lubrication the corneas can ulcerate and lead to blindness.

R

 

Richard Hurtig, Ph.D.

Professor & Starch Faculty Fellow

Dept of Communication Sciences & Disorders

The University of Iowa

 

From: xxxxxx@alsa.simplelists.com [mailto:xxxxxx@alsa.simplelists.com] On Behalf Of Alisa Brownlee
Sent: Tuesday, May 6, 2014 9:01 AM
To: National ALS Association AT Listserv
Subject: eye crutches

 

Has anyone used eye crutches to keep eyelids open?

Any input appreciated.

Thx

 

Alisa

 

Alisa Brownlee, ATP

Assistive Technology Specialist

ALS (Lou Gehrig’s Disease) Association, National Office and Greater Philadelphia Chapter

Conference Chair, RESNA 2014 Convention

 

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