Grinch Holds Lou Gehrig (ALS) Patients Hostage

ALS patients nation wide are being held hostage this Christmas by a Grinch on Capitol Hill. His name is Tom Coburn, Senator from Oklahoma. The Wall Street Journal posted the front-page article on Dec. 21st and detailed how this Senator worked late while others adjourned for the Holidays. His scrooge style mission was to place a "hold" on selected bills, a procedural maneuver that allows a single senator to prevent a bill from being passed quickly without a roll-call vote or floor debate. The bill held hostage is the ALS Registry Act S.1382. This legislation would authorize the establishment of an ALS Registry at the Centers for Disease Control and Prevention. The House of Representatives passed the bill on Oct.16, 2007 by an overwhelming 411-3 vote. The Senate H.E.L.P. Committee favorably reported the Senate version of the bill on Nov. 14, 2007 and more than two-thirds of the Senate has cosponsored the bill. The ALS Registry Act is needed to build on projects underway at the CDC and supported by the Congress and the Administration.
This bill was drawn up and introduced by Congressman Elliot Engel, N.Y. in 2004. When this bill finally becomes law it may take the CDC two years to collect the first of its ALS data. My question for Senator Coburn would be to tell me how many ALS patients would die in this five-year period. If we had the ALS Registry Act we would know the facts and much more Senator.

All Dressed Up and Nowhere to Go

When I was a teenager I remember a sign out front of a funereal home across from the Dairy Queen. The sign read; Today we lay to rest; Alfred P. Smith (Atheist) All Dressed Up and Nowhere to Go.Since ALS has robbed me of the ability to dress myself I leave everything to my wonderful wife. After a refreshing shower I remained in a trace as she dressed me for the day. It was a Florida perfect day and thought the time had come to do a little outdoor reading. After a while of sitting in the sun my wife brings out my last place Devil Rays ball cap. Dropping the book while turning the page I noticed I had on my boating shoes, fishing shorts, golf shirt and now the baseball cap. If you're familiar with ALS you should know that not one of these sports is possible for me anymore. I said outloud "isn't this just great, here I sit, All Dressed Up and Nowhere to Go"

What ALS has Taught Me

1. Patience
2. It isn't necessary to bite your nails.
3. Picking your nose is a memory.
4. Most doctors don't know anything about ALS.
5. Metamucil is my new friend.
6. The medical community is "big business" and their bottom line is profits.
7. If you really need to know something about ALS ask a Caregiver.
8. Some PALS have no sense of humor.
9. Some PALS do.
10. A good wife, spouse, makes life worth living!