Saturday, November 27, 1999
ALS patients, friends refuse to be defeated
BY KAREN SAMPLES
The Cincinnati Enquirer
EDGEWOOD, Ky. Kevin Heidrich and Cindy Shaw Crispen threw a party the other day. Against all odds, it had the spirit of a celebration.
Both almost certainly will die of Lou Gehrig's disease, formally known as amyotrophic lateral sclerosis.
Both also think medicine will defeat ALS someday. Other lives will be spared, and these two Northern Kentuckians will have played a role in that victory.
So they had a party. There was much eating of cake and hugging of friends.
Mr. Heidrich's buddies talked about his days as a quarterback at Dixie Heights High School, and about that time they all got caught skinny-dipping at a country club.
Mrs. Crispen, who went to Bishop Brossart High School in Alexandria, was surrounded by her own friends and relatives.
They know her as a prolific writer of comforting notes. When she lost the use of her hands, a friend volunteered to take over the job.
Cindy is one of the most thoughtful people I've ever met, says Mary Falk, the volunteer letter-writer.
Mrs. Crispen grew up in Cold Spring and Mr. Heidrich in Edgewood.
They didn't know each other until ALS struck and mutual friends introduced them.
Now they share a destiny and an outlook: They won't be victims. They will make a difference together.
The party took place in Edgewood, where Mr. Heidrich lives with his wife, Jill, and his children, ages 5 and 8. With Mrs. Crispen beaming from her wheelchair, he formally announced that he and his friends would be donating $8,000 toward an endowment for ALS research at the University of Kentucky.
Establishing the fund was Mrs. Crispen's idea. Her doctor, UK neurologist Ed Kasarskis, wants to concentrate full time on finding a cure.
UK needed $10,000 to start the endowment process. Mrs. Crispen had raised $2,000 on her own.
ALS affects nerves in the brain and spinal cord. Muscles
gradually lose their function. Atrophy and paralysis set in. The disease is relatively uncommon 30,000 cases nationwide but especially brutal.
Patients remain mentally alert even as they lose the ability to speak, swallow and breathe.
Lou Gehrig, the Yankees baseball great, died of ALS, so his name is often associated with it.
In this decade, the best-seller Tuesdays with Morrie has drawn further attention to the disorder. A television movie based on the book will air Dec. 5.
Mr. Heidrich, 38, was diagnosed last year after experiencing weakness and twinges in his right arm. Friends reeled at the news, then rallied, forming Team 7 in honor of Mr. Heidrich's jersey number from his football days.
This summer, Team 7 organized a golf outing at Summit Hills Country Club, to establish an education fund for the Heidrich children. The group hoped to raise $8,000 but ended up with $70,000 a testament to Mr. Heidrich's popularity.
We're not going to let Kevin go through this by himself, says Joe McGinnis, an old friend who lives in Hebron.
If the roles were reversed, Kevin would be the first in line doing this for the rest of us, says Ken Lange of Fort Wright.
The same is often said of Mrs. Crispen, 43.
She lives in Louisville with her husband and two children, ages 9 and 3. Her ALS was diagnosed several years ago; she now depends on a caretaker for basic tasks such as brushing her hair.
Her voice will be the next thing to go. On some days, she can't help but despair. Not at this party, though.
A blue and white cake says, Team 7 & UK ... working to strike out ALS. People keep stopping to shake Mrs. Crispen's hand, pat her shoulders, murmur encouraging words.
She thinks about the $2,000 she had in September, and the $10,000 in the fund today.
There is hope for a cure. She can look ahead to a better day, even if it belongs to somebody else.
We have so much to be grateful for already, she says.
To contribute to the fund assisting Kevin Heidrich, make checks payable to The Kevin Fund Fighting ALS. They can be dropped off or mailed to any branch of Fifth Third Bank.
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