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
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:
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
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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