From: Chris Jasch <xxxxxx@ric.org>
Subject: RE: ALS technologies
To: xxxxxx@alsa.simplelists.com
Date: Monday, September 24, 2012, 8:41 AM

Your question seems very broad-based and difficult to address in specific terms. However, I want to give my input regarding the ALS FLR as a predictor for assistive technology.

 

As an OT working in the field of assistive technology and a person with ALS I can tell you the rating scale cannot defined which type of technology a person needs at any given time. A person with bulbar ALS with swallowing and speaking difficulty, but functional walking and can climb stairs can get the same score as myself who can functionally speak and swallow however cannot walk or perform some self-care tasks.

 

As a clinician, when I first started going to the clinic I was very interested in the FLR score I received at each visit. It was more of a personal quest to not have the score reduced at the same rate each visit. Truthfully at this point it's too depressing to even care what the score is anymore.

 

The important part is the clinicians don't necessarily (or maybe I should say shouldn't) use a number to determine when somebody needs a wheelchair or communication device, they look at the clinical picture and make the recommendations. The same holds true for computer access, individuals vary too much to use a score to tell us if a person can use their hands functionally for mouse or needs an alternative method.

 

Access to the wheelchair, communication device and computer software varies so much with each individual and with their individual progression, a clinician uses their experience and expertise to determine the ideal method at each stage.

 

To explore the various types of technologies available to all persons with disabilities I recommend you look at Closing the Gap's resource directory and ATIA resource links. Both organizations have conference is coming up that may be helpful for you.

 

Good luck

 

Christine Jasch, OTR/L

Rehabilitation Institute of Chicago

Technology Center

345 E. Superior, Room 1543

Chicago, IL 60611

xxxxxx@ric.org

 

                                                                                                                                                                                                                                                         

From: xxxxxx@alsa.simplelists.com [mailto:xxxxxx@alsa.simplelists.com] On Behalf Of Alisa Brownlee
Sent: Sunday, September 23, 2012 9:09 PM
To: National ALS Association AT Listserv
Subject: FW: ALS technologies

 

Hello all,

I am asking for other’s input to answer the question posed below.  Anyone want to share with the writer you experience or expertise? 

Thanks,

 

Alisa

 

Alisa Brownlee, ATP

Assistive Technology Specialist

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

215-631-1877

 

Follow me on Twitter: @alsassistivetec

 

Follow my blog, dedicated to assistive technology issues, disability issues, and ALS: http://alsassistivetechnology.blogspot.com

 

 

 

 

From: anjanak [mailto:xxxxxx@bellsouth.net]
Sent: Friday, September 21, 2012 1:29 PM
To: Alisa Brownlee
Subject: Re: ALS technologies

 

Hello, 

 

            In addition to my previous queries, I was also wondering if you knew of any proven correlation between the ALS-FRL-R score and the sort of devices used by the ALS patients with a certain score. 

 

Thank you, 

 

Anjana Kallarackal 

 

---

From: anjanak <xxxxxx@bellsouth.net>
To: xxxxxx@alsa-national.org
Sent: Fri, September 21, 2012 12:39:10 PM
Subject: ALS technologies

Hello, 

 

            I am doing research on the use of high level medical technologies by those with ALS. I was particularly interested in the common interfaces like Linux/ Microsoft/etc utilized by devices commonly used amongst ALS patients. 

 

Also, if you had any information about the iuser nput devices such as clickers/ sip and puff/ eye tracking devices and their compatibility with other devices like the USB port of a HP computer, etc. 

 

Please let me know if you would like me to clarify my question or if you have any relevant insights or resources that you would be willing to direct me to. 

 

Thank you, 

 

Anjana Kallarackal 

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