Thanks Ed for the feedback. That really helps.
One thing I talked to the SLP about is priorities. I am sure her and
mine top priority is communication, but from what she has told me, I am
not sure that communication is his highest priority (in person) for the
patient - but again I have not met this person yet.
It always surprises me how often people do not talk priorities, and end
up going down rabbit holes that end up not mattering to the patient. I
been around the block enough times and gone down the rabbit holes myself
to know when to stop and reassess.
I may be coming back to the group after meeting him to get some
additional direction.
Sincerely,
Antoinette Verdone, MSBME, ATP
Founder, Rehabilitation Technology Specialist
ImproveAbility, LLC
Office/Text: 512-522-1705
Cell: 512-497-6026
Email: xxxxxx@improveability.com
"One cannot consent to creep when one has the impulse to soar" -- Helen
Keller
-------- Original Message --------
Subject: [no phi] RE: Advice for locked in patient
From: Edward Hitchcock <xxxxxx@sralab.org>
Date: Thu, September 06, 2018 6:26 pm
To: "xxxxxx@alsa.simplelists.com" <xxxxxx@alsa.simplelists.com>
I am guessing you may have covered some of this or are planning on it.
But it is probably a great time to review low technology strategies
like ETRAN or partner assisted scanning as appropriate.
Also, I have had a few very high-end eye gaze users that did so well
with typing they rarely used prestored messages. So it may well be
worthwhile to revisit prestored messages and doing things like
increasing spacing between buttons and such. Also consider a two stroke
keyboard or AEIOU layout? Six locations to pick a-D, E-H and so on and
then have it go to a page where it is a, B, C, D etc. I'm guessing that
makes sense but if not please let me know when I can elucidate further.
A couple of my end-stage users really extended their usage of eye gaze
by moving away from QWERTY based spelling with word prediction.
But definitely talk to Jane about BCI. I kind of want to be a fly on
the wall for that :-)
Edward Hitchcock
Occupational Therapist
355 E. Erie St, Chicago, IL 60611
312-238-1000 office
312-238-0000 fax
xxxxxx@sralab.org
sralab.org
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From: xxxxxx@alsa.simplelists.com [xxxxxx@alsa.simplelists.com] on behalf of
Huggins, Jane [xxxxxx@med.umich.edu]
Sent: Thursday, September 06, 2018 12:28 PM
To: xxxxxx@alsa.simplelists.com
Subject: RE: Advice for locked in patient
Sorry, didn't mean to send that to the whole list. Please trash it.
I'll send a separate message to Antoinette directly.
---------------------------------------------------------
Jane E. Huggins, Ph.D.; xxxxxx@umich.edu
"The most exciting phrase to hear in science,
the one that heralds new discoveries, is not
'Eureka!' (I've found it!), but 'That's
funny...'." -- Isaac Asimov
From: Huggins, Jane
Sent: Thursday, September 06, 2018 1:26 PM
To: xxxxxx@alsa.simplelists.com
Subject: RE: Advice for locked in patient
I’m willing to talk. When would be a good time? I’m in the
Eastern time zone here. I have time right now (Thursday), though a
student wants to meet with me around 2pm. Tomorrow (Friday) is largely
unscheduled with the exception of a 1pm meeting.
---------------------------------------------------------
Jane E. Huggins, Ph.D.; xxxxxx@umich.edu
"The most exciting phrase to hear in science,
the one that heralds new discoveries, is not
'Eureka!' (I've found it!), but 'That's
funny...'." -- Isaac Asimov
From: xxxxxx@alsa.simplelists.com <xxxxxx@alsa.simplelists.com> On Behalf
Of Antoinette Verdone
Sent: Wednesday, September 05, 2018 11:04 AM
To: xxxxxx@alsa.simplelists.com
Subject: Re: Advice for locked in patient
Temple, TX - we are based in Austin - would love to talk to you - feel
free to give me a call.
Sincerely,
Antoinette Verdone, MSBME, ATP
Founder, Rehabilitation Technology Specialist
ImproveAbility, LLC
Office: 512-522-1705
Cell: 512-497-6026
Email: xxxxxx@improveability.com
Web: www.improveability.com
Fax: 888-501-1009
Address: 3310 W Braker Lane, Suite 300-424, Austin, TX 78758
TWC/HHSC Provider# 1-274278960-0-000
"One cannot consent to creep when one has the impulse to soar" -- Helen
Keller
On Sep 5, 2018, at 9:37 AM, Huggins, Jane <xxxxxx@med.umich.edu> wrote:
There is one Brain-Computer Interface (BCI) commercially available
(IntendiX), though the AAC applications it accesses are quite limited.
There are other BCI interfaces to AAC under development, including one
that I am working on. Where is this person located?
---------------------------------------------------------
Jane E. Huggins, Ph.D.; xxxxxx@umich.edu
"The most exciting phrase to hear in science,
the one that heralds new discoveries, is not
'Eureka!' (I've found it!), but 'That's
funny...'." -- Isaac Asimov
From: xxxxxx@alsa.simplelists.com <xxxxxx@alsa.simplelists.com> On Behalf
Of Ben Lieman
Sent: Wednesday, September 05, 2018 10:08 AM
To: xxxxxx@alsa.simplelists.com
Subject: RE: Advice for locked in patient
Brain Control Interface?
Ben Lieman, ATP, MSW
Assistive Technology Specialist
The ALS Association Greater New York Chapter
42 Broadway, Suite 1724 New York, NY 10004
Direct: 212.720.3057 | Office: 212.619.1400
xxxxxx@als-ny.org / WWW.ALS-NY.org
From: xxxxxx@alsa.simplelists.com <xxxxxx@alsa.simplelists.com> On Behalf Of
xxxxxx@improveability.com
Sent: Wednesday, September 5, 2018 9:30 AM
To: xxxxxx@alsa.simplelists.com
Subject: RE: Advice for locked in patient
Thanks James for the info. I did find out that it is that he is not
able to close his eyes and they are putting cream on his eyes. What I
do not know is how well he is doing with the current system, but this is
something I can see when I visit.
Sincerely,
Antoinette Verdone, MSBME, ATP
Founder, Rehabilitation Technology Specialist
ImproveAbility, LLC
-------- Original Message --------
Subject: re: Advice for locked in patient
From: "James Brinton" <xxxxxx@eyegaze.com>
Date: Wed, September 05, 2018 7:50 am
To: <xxxxxx@alsa.simplelists.com>
Hi Antoinette,
I think the first step is to try and find out more specific details
about the condition of his eyes and then see if any eyegaze devices
might compensate for what is going on. If you find out more specific
details, I know that Nancy Cleveland, Medical Director of LC
Technologies, has 30+ years of working with difficult eye cases--she
would be a great resource if anything can be done at all. She can be
reached at 1(800) EYEGAZE and does consultations with all sorts of
complex eyeballs to find communication access, if still possible.
James
James Brinton, M.A., CCC-SLP
Assistive Technology Coordinator
Speech-language Pathologist
LC Technologies, INC
Eye Tracking That Brings Power To Sight
10363 Democracy Lane
Fairfax, VA 22030
T: 703-385-8800
F: 703-385-7137
www.eyegaze.com
Confidentiality Notice: The information contained in this electronic
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From: "Antoinette Verdone" <xxxxxx@improveability.com>
Sent: Tuesday, September 04, 2018 9:38 PM
To: xxxxxx@alsa.simplelists.com
Subject: Advice for locked in patient
Hello,
I have recently been made aware of an ALS patient. I have not personally
met him yet, but this is what I have been told:
- computer programmer
- expert user of a Talk to Me Technologies eye gaze
- has no reliable physical movement
- is losing eye gaze access - not sure why but the report from the SLP
is that he sometimes has patches on one eye or the other and he will
change up which eye is tracked with the eye gaze - I assume that he may
not be able to close his eyes and that is what is going on, but I am not
sure.
So, I am looking for any suggestions ideas on things we can try or what
to consider for access when visiting with this client.
I am concerned that because this client is such an expert eye gaze user,
changing over to switch will not be acceptable to him.
I do not have a lot of experience working with someone this far advanced
that wants to maintain access to a device. So, and questions I should be
asking or any other input is very welcome.
Sincerely,
Antoinette Verdone, MSBME, ATP
Founder, Rehabilitation Technology Specialist
ImproveAbility, LLC
Office: 512-522-1705
Cell: 512-497-6026
Email: xxxxxx@improveability.com
"One cannot consent to creep when one has the impulse to soar" -- Helen
Keller
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