01/21/2023
THE HORROR OF LOU GEHRIG'S DISEASE
It was July 4,1939 when baseball legend Lou Gehrig stood before 70,000 adoring fans in Yankee Stadium and reluctantly and without a prepared script made one of the most moving farewell speeches of all time.
He was taking himself out of the lineup after 15 seasons in which he had set an all-time record of 2,130 consecutive games played, and he was joined on the field by Baltimore's own Babe Ruth and other Hall of Fame players and managers.
He was dying of ALS , an unforgiving and deadly disease which now carries his name.
As I write these words, my wife, Mary Ann is the principal home care provider to a dying victim of ALS-a single military man in his 40s who as recently as last spring was competing in NASCAR races and who is now unable to move his fingers, chew solid food, or get out of a chair or bed without assistance.
Although his mind is in perfect condition, he is quickly losing his ability to speak, and he must get nourishment from a feeding tube in his stomach in order to avoid drowning in his own saliva.
I can't imagine any disease that is more hideous than ALS, and I am baffled by the fact that there has been so little progress in finding a cure since 1939.
This is a disease that disproportionally affects people who have been members of the armed forces, and close relatives seem to be disproportionally affected by it through inheritance.
I have been joined by some of my politically active friends to identify and support existing organizations and individuals who are trying to address the special needs of ALS victims.
My wife's client is currently hospitalized and is awaiting placement in a full time living facility where he could receive 24/7 around the clock care or an arrangement that would allow him the ability to remain in his own apartment without ever being alone.
I have been impressed by how uninformed and unequipped every day medical professionals and the VA appear to be when dealing with this disease.(A recent event occurred at a local hospital when medical professionals within earshot of the client thinking that the man was mentally impaired referred to him as a "vegetable" and a "re**rd" which was overheard by the patient. The incident was reported by an angry VA advocate who was visiting and the hospital administrator was quick to offer his personal apology, but the damage was done.)
In a perfect world there would be research and treatment facilities for this man modeled on the famous St. Jude's Hospital for children with cancer so that relatives of the disease would be given a place to stay while giving round the clock help and support to their loved one.
Would you be willing to offer advice and support to identify resources for such a project?
