Thanks, Lisa…
I have a ways to go before I get as good as you at writing and editing these articles…
It definitely pays to have a carefully designed and controlled study!! WAY, WAY easier to write it up then…
But so many ideas for many, many follow ups…
Lisa M. Bruening, M.S., CCC-SLP
Patient Services Coordinator
The ALS Association
Northern Ohio Chapter
phone: 216-592-2572
toll free: 888-592-2572
fax: 216-592-2575
Check out our webpage: www.alsaohio.org
As of October 19, 2010 every person living with ALS in the United States can self-enroll in the National ALS Registry!
How to get to the National ALS Registry http://www.cdc.gov/als
Become an ALSA Advocate! It's easy!
Go to our website and follow the tab for Public Policy. Click on Advocacy Action Center and sign up today!
Where Patients Matter Most
From: xxxxxx@alsa.simplelists.com [mailto:xxxxxx@alsa.simplelists.com] On Behalf Of Lisa Bardach
Sent: Wednesday, May 02, 2012 3:24 PM
To: xxxxxx@alsa.simplelists.com
Subject: Re: Article out today
Alisa,
Congrats to you and Lisa on getting this published!! Kudos to you both.
Lisa
On Wed, May 2, 2012 at 2:06 PM, Alisa Brownlee <xxxxxx@alsa-national.org> wrote:
Passing on the info below from me and my co-author Lisa Bruening. This article was published today in the Journal of Language Disorders. We had 3 years of data to incorporate into this one article and we have many ALS Chapters and hundreds of past caregivers of people with ALS to thank for participating in our survey. Thank you to everyone that made this possible.
Regards,
Alisa
Alisa Brownlee, ATP
Clinical Manager, Assistive Technology Services
Follow me on Twitter @alsassistivetec
or visit my blog on assistive technology for people with ALS: http://alsassistivetechnology.blogspot.com
Direct phone number 215-631-1877
From: lisa [mailto:xxxxxx@alsaohio.org]
Sent: Wed 5/2/2012 11:48 AM
To: Alisa Brownlee
Subject: FW: our article!
Topics in Language Disorders:
April/June 2012 - Volume 32 - Issue 2 - p 168–185
doi: 10.1097/TLD.0b013e31825616ef
End-of-Life Considerations in Clinical Practice
Methods of Communication at End of Life for the Person With Amyotrophic Lateral Sclerosis
Brownlee, Alisa; Bruening, Lisa M.
Supplemental Author Material
Abstract
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that results in loss of most motor functions by the time of death. Most persons with ALS experience a dysarthria that eventually renders oral/vocal communication unintelligible. This article reviews the communication needs of persons with ALS and the range of communication strategies used, including most forms of augmentative and alternative communication (AAC). Survey data are presented concerning perceived presence and severity of communication deficits, common communication topics, and communication strategies used with different communication partners and at 3 time intervals (2–6 months, 4 weeks, and 1–2 days) before death. Survey data were collected from 625 family members/caregivers in 8 states in the United States, reporting on their experiences with persons with ALS who were deceased at the time of the survey. The analysis focused on patterns of communication used in the last 6 months as end-of-life approaches. Most common communication topics were physical needs, caregiving issues, and family issues. Least common topics were spiritual and death and dying issues. Communication strategies did change as end of life approached, with a decrease in all modes of communication including natural speech, writing, gestures, and electronic AAC. Unaided and low-tech strategies did not increase during the same time interval. Health care providers must be knowledgeable about the communication options available and factors influencing communication choices. Speech–language pathologists play an important role in monitoring speech changes, providing assistance in making choices about communication options, and educating clients, health care providers, and family members.
Lisa M. Bruening, M.S., CCC-SLP
Patient Services Coordinator
The ALS Association
Northern Ohio Chapter
phone: 216-592-2572
toll free: 888-592-2572
fax: 216-592-2575
Check out our webpage: www.alsaohio.org
As of October 19, 2010 every person living with ALS in the United States can self-enroll in the National ALS Registry!
How to get to the National ALS Registry http://www.cdc.gov/als
Become an ALSA Advocate! It's easy!
Go to our website and follow the tab for Public Policy. Click on Advocacy Action Center and sign up today!
Where Patients Matter Most
--
Lisa G. Bardach, MS CCC-SLP
Communicating Solutions, LLC
2314 Yorkshire Road
Suite 200
Ann Arbor, MI 48104
phone (734) 973-9670
fax (734) 975-6970
ALS of Michigan, Inc.
24359 Northwestern Highway, Suite 100
Southfield, MI 48075
248-354-6100 x227
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