Amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig's disease

The reason for this page is I once took care of a man with ALS, when I worked as a home health aid. At the time I really knew nothing about it. One night I came across a web site on ALS and as I was reading it, I realized I still didn't know that much about it. If I someone who had helped a person with it didn't know very much what about people that have never met someone with it. The man I took care of was on his 10th year of living with it, after diagnosed most people die within 3 to 5 years. I helped with activites of daily living, preparing food and feeding him, I helped him shower and dress. Then I would help him with range of motion. He moved to a different area and I moved to a different job, so I have no idea how he is doing, but I often wonder. I hope from this page you can gain a bit of knowledge and maybe learn ways that you can help in raising awarness. Right now there is no cure, and only one drug on the market to help slow the progress of this horrid disease. Check out the links I have I have found some very helpful sights.

What is ALS?
Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that attacks nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With all voluntary muscle action affected, patients in the later stages of the disease become totally paralyzed. Yet, through it all, for the vast majority of people, their minds remain unaffected.
ALS Association's Introduction to a Patients Bill of Rights

1. You have the right to receive comprehensive information about ALS, including options and resources for your health care needs. This includes the right to communicate with your government representatives regarding policies and practices of the FDA, NIH, DHHS and other agencies that impact ALS.

2. You have a right to participate in decisions about your health care including the right to accept, discontinue or refuse treatments and therapy

3. You have the right to access ALS specialty care in a timely manner.

4. You have the right to receive health care that is coordinated and individualized for you across the spectrum of home, hospice, hospital, nursing home, outpatient, and work-place.

5. You have the right to access health care benefit coverage without discrimination based on your ALS diagnosis or physical disability

6. You have the right to obtain clear, timely information regarding your health plan including benefits, exclusions and appeal procedures

7. You have the right to access your medical records and have the information in your records explained to you

8. You have the right to prepare an advance directive to tell health care providers your wishes regarding emergency and end-of-life treatment choices

9. You have the right to receive care that is considerate and respects your dignity, your cultural, psycho-social and spiritual values and your privacy. You have this right no matter what choices you make about treatments and therapy, what your disabilities related to ALS might be or what your financial situation is.

10. You have the right to know that the information about you and your medical condition will be held confidential by your health care providers.

11. You have the right to receive support to enhance or maintain your quality of life and have your family involved in all aspects of your health care.

ALS Association Evergreen Chapter

Linda Gibson An interview with Linda Gibson, mother to Marcie, 28, who was diagnosed with ALS in 1994.

Ann G. Smith Living with ALS

American Academy of Family Physicians

Les Turner als Foundation

SUPPORTWORKSŽONLINE

ALS: A Guide for Patients

NOAH: New York Online Access to Health

"Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth. I have been in ballparks for seventeen years and have never received anything but kindness and encouragement from you fans. Look at these grand men. Which of you wouldnt consider it the highlight of his career just to associate with them for even one day? Sure Im lucky. Who wouldnt consider it an honor to have known Jacob Ruppert? Also, the builder of baseballs greatest empire, Ed Barrow? To have spent six years with that wonderful little fellow, Miller Huggins? Then to have spent the next nine years with that outstanding leader, that smart student of psychology, the best manager in baseball today, Joe McCarthy? Sure Im lucky. When the New York Giants, a team you would give your right arm to beat, and vice versa, sends you a gift - thats something. When everybody down to the groundskeepers and those boys in white coats remember you with trophies - thats something. When you have a wonderful mother-in-law who takes sides with you in squabbles with her own daughter - thats something. When you have a father and a mother who work all their lives so you can have an education and build your body - its a blessing. When you have a wife who has been a tower of strength and shown more courage than you dreamed existed - thats the finest I know. So I close in saying that I may have had a tough break, but I have an awful lot to live for."