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The National Family Caregivers Associationis now partnering with American Medical ID to provide medical caregiving bracelets, pendants and dog tags that will alert emergency personnel to the person's essential caregiving role. They recommend that caregivers engrave information on the ID such as:
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I am a family caregiver for my (relationship)
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Caregiver's name
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Care recipient's name
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Urgent needs and instructions of the care recipient
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Whom to contact in the caregiver's absence
If more information is needed, add "See wallet card" and include additional instructions on the free wallet card that comes with the bracelet, pendant or dog tag.
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Greetings!
Happy New Year!
We hope that 2010 is off to a good start for all of you and that you enjoyed your holidays.
Things at The ALS Association are going well, and we are excited for the new year. We will soon begin planning of our annual events, including our Walk to Defeat ALS and the Patient & Family Educational Forum. If you have any ideas about either event, or would be interested in helping to plan them, please let us know. We would love to have your input!
There is an article below about new American Academy of Neurology guidelines for the care of people with ALS. If this is something that interests you, watch your email for information about an upcoming webinar on Thursday, February 11. Led by four of the guidelines' authors, each a well known clinician in the field of ALS clinical care and research, the webinar will provide a practical overview and an opportunity for questions and answers. We will let you know the details as they become available.
Sincerely,
Leslie & Suzanne
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Featured Article
 Ask the Doc:
Q & A with Edward Kasarskis, MD, PhD
Edward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY.
Q: I heard that the American Academy of Neurology (AAN) has just come out with new guidelines for the care of people with ALS. Will those guidelines change the care I'm getting now or what my doctor is doing for me?
Dr. Kasarskis:
You're right; the AAN recently released new practice guidelines for the care of ALS. (I served on the review team led by Dr. Robert Miller from San Francisco). They were developed by a team of experts in ALS and review all the available studies published internationally on key aspects of clinical care for ALS patients. Following the established AAN criteria, each study was rated according to the quality of the research. Only the highest quality studies from around the world were included to formulate the practice guidelines. Areas investigated included drugs to slow disease progression, nutrition, respiratory management, multidisciplinary clinics, symptomatic treatment, and others.
Practice guidelines are really "one stop shopping" for the best available evidence that particular approaches are effective treatments. The information should help people with ALS have confidence to move forward with treatments and approaches recommended by their physicians using these guidelines. Here are the highlights:
- ALS multidisciplinary clinics, such as The ALS Association Certified Centers, optimize health care delivery and prolong survival, and may also enhance people's quality of life.
- People who are beginning to experience difficulty eating should be encouraged to consider getting a feeding tube, formally called "percutaneous endoscopic gastrostomy" (PEG), to help them maintain their weight and ensure they get the nutrition they need.
- Bi-level Non-Invasive Positive Pressure Ventilation (NIPPV), a breathing apparatus that helps people get more air into their lungs, should be encouraged to treat problems of ineffective breathing (called respiratory insufficiency) due to weakness caused by ALS. NIPPV has been shown to lengthen survival and slow the rate of decline in lung function.
Each time you're asked to make a decision about the care or treatments you'll receive, it's helpful to know that these questions have been thoroughly studied and there is solid evidence that they are beneficial.
You can access the guidelines at http://tinyurl.com/ydj5cjf. Look for "Slide Presentation - Update, The care of the patient with amyotrophic lateral sclerosis," October, 2009. | |
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Advocacy Updates 
Congress has increased its commitment to the ALS Research Program at the Department of Defense by appropriating an additional $7.5 million in funding for this year. This funding is in addition to the $2.5 million that was added to the Lifespan Respite Care Act and $6 million for the National ALS Registry. The ALS Research Program will have received a total of nearly $18 million to support its mission to find a treatment for ALS. The $2.5 million addition to the Lifespan Respite Care Act brings that program's funding to a total of $5 million which will assist states through grants in supporting local respite care programs once distributed. Click here to read more. |
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Announcements
- The Newly Diagnosed Workshop series will take place on Monday evenings in February. If you have recently been diagnosed with ALS, please join us for these informative sessions.
- We have some Simply Thick Nectar gel packs, Thick It powder and Ensure powder available at the office for anyone who needs it.
- There is a 20ft modular ramp with railing availble in our loan closet.
- A reminder that the The ALS Association - Rocky Mountain Chapter office has moved. Our new address is 7403 Church Ranch Blvd, Unit 109, Westminster, CO 80021
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Equipment Corner
 Grab BarsSafety is always a concern when dealing with the changes that occur with ALS. One way to maintain your safety and independence in the bathroom is to install grab bars in the tub/shower area and next to the toilet. These bars give a person a secure place to hold on to for support and balance. Grab bars come in a variety of lengths and are mounted vertically, horizontally or diagonally depending upon your needs. Even if there isn't a wall near the toilet, there are bars designed to attach behind the toilet allowing a person additional stability and a secure surface to push up from when standing. If you would like more information on what is available and where to place grab bars, please call Suzanne at (303) 832-2322. |
 Mark Your Calendars! | |
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