Resources available for those with ALS
To the Editor:
On May 15, Tracye and I had the opportunity to fly to Washington, D.C. to be a part of the group of people who are trying to raise the awareness of the dreaded disease, A.L.S., or more commonly known as “Lou Gehrig’s Disease.”
There were 48 states represented at this year’s Public Conference and Advocacy Day. There were eight people from the state of Alabama, six from the Huntsville area and Tracye and I from Selma.
In all, there was a total of approximately 700 people, including 90 PALS (People with ALS) on Capitol Hill on May 17 to ask the Senators and Representatives from all states to sign the bill that has already been introduced, requesting funds for a National ALS Registry.
With this, there will be data documenting everyone who has ALS nationwide, their location, environment, workplace conditions and all factors pertaining to their specific lifestyle can be studied and researched. There has to be some connection to the increasing numbers of people diagnosed with ALS now.
The second request that was brought to their attention was a request to the Department of Defense that some of the funds already allocated to the research of Parkinson’s Disease be used also for the research of ALS.
Studies conducted by several organizations have determined that people with any military history service are at a 50 percent higher risk of ALS than those who did not serve in the military.
ALS is a fatal disease that attacks the nerve cells and pathways in the brain and spinal cord. When these cells die, voluntary muscle control and movement dies with them. Patients in their last stages are totally paralyzed, but the cruelest part is that their mind remains sharp and alert.
“The disease is always fatal.” The life expectancy is an average of two to five years at the time of diagnosis.
The only ALS Association Chapter in Alabama is located in Huntsville. They serve 30 counties in North and Central Alabama. ALS services are for local families and patients. All ALS services are free. They sponsor an ALS support group; maintain a DME “loan closet” with wheelchairs, ramps, SCD (speech computer) and other equipment that can be borrowed when necessary. They develop an Alabama ALS resource guide.
There is a chapter web site with current calendar and patient information such as tips and resource guide.
Please help us make more people aware of this devastating disease and help our state senators and representatives see our need for the Registry and more funding for the research of ALS.
If you have family members or know someone who has been diagnosed with ALS, please send names and addresses to me at 168 County Road 882, Selma, AL 36701 or to Deb Kohlhase, executive director, ALSA Alabama Chapter, www.ALSAlabama.org or call (256) 519-9030.
The ALS Association is there for you and will advise you and help you in every situation as it comes up.
May God continue to bless each and everyone of you and we thank you for all your support and help in this project in the past years. And we thank you in advance for your help and support once again.
Dorothye Jackson and Tracye Howe