[DYSPHAGIA] RE: ALS patient and AAC options

[kgoertz@pahd.sk.ca (Clarke-Goertz, Kim (PAHD))]

I wanted to thank all of you who responded to my query re: ALS and AAC
options.  I'm getting closer to my goal of presenting suitable options for
this gentleman.  I've had some research to do and some compiling of
information (thanks to all of the wonderful folks out there who replied).
The next step will be to assess his functional communication and trial some
devices.

I will report as I go along on what is working and what isn't for those who
are interested.  Also, below I have added the information I received from
listserv members on contacts, resources and general ideas/tips so all could
benefit as I have.

Thanks again,
Kim

ALS and AAC

Resources:
· www.enablingdevices.com
· www.x-10.com
· radio shack online
· www.zygo-usa.com
· GF Strong Rehabilitation Centre in Vancouver, BC Canada
· www.alsa.com
· book: Augmentative and Alternative Communication For Adults with Acquired

  Neurologic Disorders by Beukelman, Yorkston and Reichle

Contacts:
· Robert Miller, University of Washington  rmm2@u.washington.edu  (206) 
  542-6898
· Tom Burke  tomburke3@prodigy.net
· Cathy Wengryniuk at GF Strong Rehab Ctr  (604) 734-1313 local 2267
· Tessa Lowis (SLP in Victoria BC)  414-3221
· Marta Kazandijian (NY Hospital Medical Center Queens)
· Lisa Bruening Cleveland Hearing and Speech Center in Ohio  (216)231-8787
· AAC listserv  isaac-list@snow.utoronto.ca
· Dr. Laura Ball UNMC
· Deb Crislip  (404)350-7721  deb_crislip@shepherd.org

Devices:
· x-10 powerhouse devices from Radio Shack (remote control switches)
  -controller has to be x-10 (for IR capabilities), but you could add other

   appliance units (e.g., plug-n-power) that are not x-10
· Dynavox (with x-10 equipment)
· Tough Book (Freedom) touch screen lap top with a modem and phone hook 
  up - then buy Dynavox software to run on it.  If use of UEs can use a spec

  switch; when UEs no longer in use, use an AST switch -you hook up into 
  phone tools and can use switch to dial and software to speak
· Lightwriter - try to get from the ALS society - need a scanning attachment

  later on - can plug into a PC
· Words + -speaks, scans, internet access, telephone access and 
  environmental controls
· Ameriphone - Dialogue RC200 -speaker phone that can be operated with a 
  switch

Tips:
· record the person's own voice into the device (the sooner the better)
· determine the type of phrases he needs 
· make sure the device can use any kind of input device when UEs go
· train the person early so he/she won't have to re-learn a new system later

  when he'll need consistency the most
· trial at least 2 or 3 systems to find the best fit - try one with text
based 
  messages as well as one with pre-stored frequent phrases

Kim Clarke-Goertz CCC-SLP (C)


-----Original Message-----
From: Caroline Johnson [mailto:Caroline.Johnson@MED.VA.GOV]
Sent: Friday November 16, 2001 08:07
To: C-NET_ADULTNEURO@LISTSERV.ARIZONA.EDU
Subject: Re: ALS patient and AAC options


I have seen several ALS pt.'s in the past few years at the Lexington, KY
Veteran's hospital. Almost all my ALS patients have a DynaVox communication
device and some use the DynaVox to communicate via phone. There was a very
good Teleconference called "Augmentative & Alternative Communication
Intervention in ALS Patients" on 3-22-00 from the University of Arizona that
talks about using low tech AND high tech AAC with this population. I have to
go now...but you can call me at 859-281-4972 if you want more info.
Caroline Johnson, M.A. CCC-SLP

-----Original Message-----
From: Clarke-Goertz, Kim (PAHD) [mailto:kgoertz@PAHD.SK.CA]
Sent: Tuesday, November 06, 2001 11:11 AM
To: C-NET_ADULTNEURO@LISTSERV.ARIZONA.EDU
Subject: ALS patient and AAC options


Dear members,

I apologize in advance for posting this to the dysphagia listserv, however,
I know there are SLPs in this group who serve patients with ALS regularly
and it is you who I need some advise from.  So all you devout dysphagia
experts who deal with no AAC can now tune out/delete  :  )

I have been asked by one of our OTs to help with a gentleman in long term
care/nursing home who has ALS.  Apparently he still has some UE
strength/function and uses the telephone as a main contact daily.  He has
occasional visitors but uses mostly the telephone.  So, for that, we are
looking at ordering a remote controlled speakerphone.  He will need
financial assistance for this device, so we will be making application to a
local foundation for monies (we may also ask for other equipment to be
funded, but at the moment I need some assistance determining what other
equipment might be useful for this man - any and all suggestions are
welcome).

My question is this:  what other communication aides/devices/strategies
would you recommend for an individual with ALS; high tech, low tech?  I
realize that AAC is very individualized to each person's needs, however, I
have not had any other cases of ALS/AAC, only ALS/dysphagia.  I know from
past emails that there are some clinicians out there who serve this
population either exclusively or frequently and I would greatly appreciate
some advice if you can spare the time to give it.

I will be happy to provide more details about this gentleman's case as
questions are asked and answered.  I do have an AAC assessment protocol to
follow and will be starting that this week with him, however, due to the
time constraints of this disease I want to do as much as I can for him as
fast as I can.

Thank you in advance for any and all replies.

Kim

Kim Clarke-Goertz CCC-SLP (C)
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