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Award honors ALS survivor
‘Pa-pa often fell’ but always got back up

By Sara Gilbert Frederick, Special to The Free Press
The Free Press

NEW ULM —
Clair Gieseke was a senior in high school when her dad returned to the family farm near Klossner after a doctor’s appointment in Rochester with bad news.

Wilfred Griebel had been diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gherig’s Disease. The neurologists he had spoken with gave him two, maybe three years to live.

Almost 30 years later, they both remember that day.

“I said right away, ‘I’m going to make it,’ said Griebel, now 81. “I made up my mind to do what I always do.”

In May, Griebel’s perseverance — his five grown children call him “a stubborn German” — was honored by the Muscular Dystrophy Association (MDA) of Minnesota, which supports people with several neuromuscular disorders, including ALS.

Griebel received the 2008 Robert Ross MDA Personal Achievement Award in recognition of “his positive spirit and the determination with which he seeks success despite the challenges of disability,” according to the MDA.

Gieseke nominated him for the award after seeing it mentioned in an MDA newsletter.

“I thought that anyone who has lived with ALS with such a positive attitude for 30 years deserved it,” she said. “I thought I could get away with just e-mailing his name, but they sent me a whole packet of paperwork to fill out.”

In the process of completing the nomination, Gieseke gathered more than a dozen letters of recommendation from family members. Many of Griebel’s grandchildren and great-grandchildren wrote their own notes, talking about how their “Pa-Pa often fell” but always got back up.

“Every one of them made me cry,” she said.

It was Griebel’s turn to cry when he got a letter officially informing him of the award in May.

“I didn’t know anything about it,” he said. “It was a surprise.”

So was his survival. Most of the approximately 30,000 people with the disease in the United States live only three to five years past diagnosis. In rare cases, patients are able to live with the condition for many years; physicist Stephen Hawking, who has lived with ALS for 40 years, may be the most recognizable example.

Griebel knows that he is blessed to have survived the past 30 years. After a rapid onset that claimed much of his leg strength and also weakened his arm and face muscles, the progress of the disease suddenly stopped. It was about that time, Griebel says, that he became involved with MDA.

Griebel and his whole family have remained active in MDA activities since then. They participate as a group, sometimes with as many as 30 or 35 people, in the annual ALS walk in Mankato, and make themselves available for other fundraisers and events as well. Griebel is always willing to talk to other ALS sufferers and to offer whatever support he can.

“At first, I couldn’t find anybody who had ALS,” Griebel said. “But now I know a lot of people.”

The national Robert Ross MDA Personal Achievement Award winner will be announced during the Jerry Lewis Telethon on Labor Day. Griebel and his family will be at a telethon event at Treasure Island Resort and Casino near Hastings for the occasion.

“We’ve always watched it,” Griebel said. “This year we get to be there.”



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