2000 Conference Proceedings

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Barbara Phillips, MS OTR, ATP
Molly Doyle, MS CCC, ATP
Las Floristas Center for Applied Rehabilitation Technology (CART)
Rancho Los Amigos National Rehabilitation Center
Downey, California 90242

The goal of this presentation is to inform service providers of the unique implications of providing assistive technology (AT) to individuals with amyotrophic lateral scelerosis (ALS). Emphasis will be placed on the key role of the interdisciplinary team while performing assessments, teaching individuals and care providers to use AT, and the importance of follow-up services. The course will focus on strategies to accommodate for decline in functional status. The presenters will address the following technology areas: augmentative communication, computer access, electronic aids to daily living and AT integration, and will also touch upon seating and mobility issues. Several case studies will be presented.

Amyotrophic lateral sclerosis (ALS) is an adult onset, progressive neuromuscular disease which affects all aspects of daily living. There are different manifestations of ALS however, all persons diagnosed demonstrate debilitating muscle weakness which results in a steady decline in functional status. The rate of progression varies from person to person. Individuals with ALS can benefit from a range of assistive technologies during all phases of the disease. Existing devices often need to be adapted or new devices introduced to accommodate for the progressive loss in function.

Individuals with ALS typically receive an initial AT evaluation and then are followed through the course of their disease. During the evaluation, the individual’s current functional status and needs are assessed. Anticipated changes in future function and needs are addressed prior to prescribing assistive devices. Upon receipt of the recommended equipment, return visits to the clinic are scheduled to address the issues of set-up and training. Subsequent contacts are indicated to ensure that the recommended technology continues to meet the individual’s needs. If a client is unable to attend a follow-up session, modifications and trainings are done in the home or with care providers.

The presentation will be based on the interdisciplinary approach used at CART and will follow several clients through the process of initial evaluation, equipment recommendations and acquisition, training, follow-up and on going equipment modifications. Additional discussions will address two areas essential in successful AT application with ALS populations: how special collaborations fostered in the community maximize the quality of services provided and how response to the progressive nature of the disease has resulted in the need to alter the AT intervention process including the features that facilitate functional use. Case studies will be used to highlight these issues.

Book Resources

Kazandjian, S. Marta: Communication and Swallowing Solutions for the ALS/MND Community. Singular Publishing Group, Inc. Miller, M., Robert, Strand A., Edythe, & Yorkston, M., Kathryn. Management of Speech and Swallowing in Degenerative Diseases. Arizona: Communication Skill Builders. 1995. Gallegher, J. P. Pathologic laughter and crying in ALS: A search for their origin. Acta Neurologica Scandinavica. 1989; 80(2):114-17. Montgomery, G.K., and L.M. Erickson. 1987. Neuropsychological perspectives in a amyotrophic lateral sclerosis. Neurological Clinics 5(1):61-81.


Blackstone, Sarah. Augmentative Communication News. (January - February 1998, March - April 1998. Volume 11, Number 1 and 2. Cedarbaum, M., Jesse, Charatan, Matthew, Stambler Nancy, & the ALS CNTF Treatment Study Group. Prognostic indicators of survival. 1998. Alderson, M.K., MD; Almada, A.; Brinkmann, J.R., MS; Bryan, W., MD; England, J.D., MD; Gappmaier, E., MS; Graves, J., MS; Herbelin, L.; Lee, M.Y., MA; Mendoza, M., MS; Miller, R.G., MD;MS; Smith, P.; Murphy, J.R., PhD; Mylar, D., Petajan, J.H., MD; Ringel, S.P., MD; Roelofs, R.I., MD; Smith, S.A., MD; Yu, P.; &Ziter, F.MD. The natural history of Amyotrophic lateral sclerosis. Neurology 1993.

Hillel, A., Miller, R., Yorkston, K., McDonald, E., Norris, F. & Konikow, N. (1989). ALS Severity Scale. Journal of Neuroepidemiology. 3: 142-150. Yorkston, K., Strand, E., Miller, R.n Hillel, A.m Smith, K. (1993). Speech deterioration in amyotrophic lateral sclerosis: Implications for the timing of intervention. Journal of Medical Speech-Language Pathology. 1;1, 35-46.

Carroll-Thomas, S. (1995). Communication changes and challenges in ALS?MND. Journal of Speech -Language Pathology and Audiology: 19:4, 281-282.

ALS Web site

ALS Association: http://www.alsa.org

ALS Association, Greater Philadelphia Chapter: http://www.als-phila.org/

MDA/ALS Clinic at Baylor College of Medicine:http://www.bcm.tmc.edu

Led Turner Amyotrophic Lateral Sclerosis Foundation:http://www.familyvillage.wisc.edu/lib_als.htm

ALS Association, Greater New York Chapter:http://www.als-ny.org/

Family Caregiver Alliance Fact Sheet - ALS: http://www.caregiver.org

ALS/MND on the World Wide Web: http://http1.brunel.ac.uk:8080/~hssrsdn/alsig/als_rsrc.htm

ALS - MND - Motor Neurone Disease Association - UK:http://www.alsmndalliance.org/, http://www.businessconnections.com/mnd/

ALS Society of Canada: http://www.als.ca ALS Society of British Columbia: http://www.freenet.vancouver.bc.ca/als/

World Federation of Neurology - ALS Web Page: http://www.wfnals.org

ALS March of Faces:http://hometown.aol.com/alsmof/index.html, http://members.aol.com/alsmof/index.html

Ride for Life - ALS News & Information:http://www.rideforlife.com\

ALS Adovocacy:http://pages.prodigy.com/ALSPROD/

The ALS C.A.R.E. Project: http://www.outocmes.org/als/

The ALS Survival Guide: http://www.lougehrigsdisease.net

Doctor D. Eric Livingston=s patient=s guide to ALS: http://www.phoenix.net/~jacobson/pages/guide1.html ALS News - Muscular Dystrophy Association:http://www.mdausa.org/publications/alsnews.html

Yahoo! Message Board for ALS has beeb started on Yahoo!-From the Yahoo! Main Page, go to HEALTH Disease. When the next page comes up, select Message Boards. When the next page comes up, select Message Boards. When the Message Boards page come up, select Alphabetical listings. Find ALS and click on it.

ALS Association:http://www.alsa.org

Family Caregiver Alliance Fact Sheet: ALS:http://www.caregiver.org

Ride for Life - ALS News and Information: http://www.rideforlife.com

The ALS Survival Guide: http://www.lougehrighsdisease.net

ALS News - Muscular Dystrophy Association: http://mdausa.org/publications/alsanews.html

ALS Resources (Communication Aids, Links, etc.):Http://www.speakeasily.com/alslinks.html

The national Library of Medicince has sites that allow you to search published medical literature. MEDLINEplus: http://nlm.nih.gov/medlineplus/

ALS Digest. This is an ALS Interest Group?s weekly newsletter with over 3050 subscribers. Bob Broedel is the editor. E-mail bro@huey.met.fsu.edu to subcribe.

ISAAC. The International Society for Augmentative and Alternative Communication Web site has information about the organization, national chapters, AAC (the Journal), conferences, direct links to manufacturers and an interactive section. http://www.isaac-online.org

University of Nebraska-Lincoln. The Barkley Center website is rich with resources. Check out the Case Study of Mr. Scott, a man with ALS who uses Vision Key. Thom Jakobs did a nice job describing the process of equipment selection and its impact. http://www.@aac.unl.edu

Applied Science Engineering Laboratory. ALS Web site at the University of Delaware http://www.asel.udel.edu/rerc-aac

Stephen Hawking’s site http://www.damtp.cam.ac.uk/user/hawking/home.html

Assessment/ Prognositic Tools

Archives Neurology Bo 53 Feb 1996, pgs 141-147 The Amyotrohic Lateral Sclerosis Functional Rating Scale
Journal of Medical Speech-Language Pathology, 1993, 1(1):35-46 Yorkston, K.M., E.Strand, R. Miller, A. Hillel, and K. Smith. 1993- Speech deterioration on AlS: implications for timeing of intervention Neurology, 1986; 38:937-41 Andres, P., et al. 1986, Quantative motor assessment in amyotrophic lateral sclerosis
Neurology, 1992; (43) 1316-1322 Ringel, S.P., et al. The natural history of amytrophic lateral sclerosis
Mulder, Donald editor; 1980 The Diagnosis and Treatment of amyotrophic lateral sclerosis, pgs 171-192.

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