Thursday, March 12, 2009

Where would we be without friends?

When the tough face

-- their friends see them through.

That's the case these days as we reach out and ask for donations and support for the ALS Association, the Goldsmith Team and the Walk to Defeat ALS.

People have written checks, offered to walk with us, and asked what else they can do. Virginia Spiegel, a talented (soooo talented!) fabric artist has donated AND mentioned our cause on her blog and testified that the ALS Association is a worthwhile cause. The local quilt guild Cabin Fever Quilters is looking into contributing a raffle quilt so we can raise some more funds with that. Family and friends we haven't seen for more than a decade are demanding to know how they can give and what else needs done. New friends, neighbors, work place colleagues all want to help. And all of their prayers and good wishes keep us going as we face new challenges in our personal life.

We have never been ones to ask, we'd rather be the ones doing and giving, but in the last few years, we find ourselves on the receiving end of so many kindnesses and so much generosity that we can't think about it without getting tears in our eyes.

When Derrol's brother was stricken with ALS it was the 1960s and Tommy was 10 years old. The neurologists had no idea what it was, not even thinking ALS in one his age. Ironic -- he was playing Little League baseball at the time and was stumbling and falling -- these were his first symptoms. I guess he and Lou Gehrig had more in common than we ever expected. Tommy had just turned 18 when he died. He had wasted away to a near skeleton. His voice was gone, but he was as sharp as ever. For a boy/man of that age to watch his body turn on him and know there were no treatments -- no hope....

There were four boys and two girls in that immediate family and they all chipped in to help with Tommy's care and quality of life. Derrol, the oldest, would take Tommy to the high school and literally throw him over his shoulder to take him to classes -- up stairs and down -- rushing to not only get Tommy to his classes but Derrol had to get to his own. Everyone wanted Tommy to live life to the fullest. They all went to hockey games at the arena nearby and the hockey team adopted him as their mascot. Tommy's wheelchair still has a bumper sticker on it with the team's name and logo. All of these years later, he died in 1972, the wheelchair is a reminder -- as if we need one.

We look at our two grown sons and pray, "Not them, please not them."

We not only work for ALS funds to help Derrol, our sons, and to remember Tommy, but for my father. He had a similar neurological disease -- Alzheimer's Disease. We know that research in one 'tangle' disease as they call ALS, Alzheimer's, Parkinson's, etc. helps move research forward in all of them. Muscular Dystrophy is also related. So our efforts to help Derrol have a much broader service.

And, sorry, I can't seem to stop writing about this once I get started. One more thing. Our military men and women especially those who served in the Gulf War are from 35 to 60 percent more likely to get ALS than the general population. Now we see a cluster of ALS diagnosis in people who were involved with NASA and Patrick Air Force Base. There is a study going on right now to find out the common denominator.

Sadly most people stricken are hardy, athletic, healthy people whose muscles shrivel and waste and usually within 3-6 years they are totally incapacitated and die. About 90 percent of those diagnosed have no idea why they have it. It is called sporadic and hits for no seeming reason at all. Five to 10 percent have the familial or inherited form that Derrol was diagnosed with.

ALS Association funds research and offers support and supplies and equipment (at no charge) to patients of ALS -- I don't know what we would do without this group of people. Between our support group at ALS Association in Winter Park and the Florida Chapter as well as our dear friend Gary Presley, Derrol has quality of life and is learning about living with a disability.

Our friends running the Florida Chapter of ALS Association say we've set out a really tough goal to reach -- $5000. They're probably right. But I think their goal may be tougher -- a cure for ALS. We are 1/5th of the way to our goal -- with help we can make it! We live in hope, it is the only thing available to people with ALS until we find treatments and cures.

With help from our friends, we can get rid of this and many other nasty diseases that seem to target our best and brightest and bravest. Thank you for your thoughts, prayers, and donations. Just knowing that someone cares is a priceless gift.

If you care to donate,
please click here and then push the Make a donation button, follow the directions and don't forget to hit SUBMIT! And please know how much we appreciate your help in this project we cannot complete alone.

No comments: