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MINNEAPOLIS — About 5,000 people are diagnosed with ALS each year.
It’s a disease that takes over the nerves in the brain and spinal cord – and takes over lives quickly. But, there is a ray of hope on the horizon.
Remember the Ice Bucket Challenge? It was a viral campaign to “shock” people into ALS awareness with a cold water dump.
You know what’s funny, I even got challenged and I was like, I’m not doing that. That’s karma,” said Gayle Jacobs of Bloomington.
Now she’s laughing in the face of fear. A wife and mother of four is reflecting on her journey.
“When I was typing, I couldn’t lift my left index finger to reach the top key. I’m 44 and I go in for carpel tunnel cause its gotta be just carpel tunnel,” she said.
But it was far from it – she got the diagnosis of ALS, a 2-to-5-year life expectancy.
“I describe it as aging in fast forward. Your brain knows exactly what’s happening and your body is like ‘hmmmm, no thanks, not gonna listen.'”
But now, she’s beating the odds, five years in. She’s lost function in most of her limbs – and gained a new outlook.
“It really gives you a neat perspective and I try to appreciate that and I try not to think about the future too much. I say to people ‘keep in mind, I could outlive you,'” she laughs.
She’s got humor – and soon she may have a new drug too. Amylyx has a new drug the FDA may approve as soon as next week – exciting her and the local ALS Association she loyally supports.
Ashley Yoder, who lost her own mother to ALS has hope for the drug, too. Cautiously optimistic, it showed that it could slow the progression of ALS. There is no treatment or cure, but it slows the progression of ALS without very many harms.
So together the women are raising money for research and loaner wheelchairs. They’re also raising hope, even if it requires another ice bucket challenge.
The ALS Association is having a big event this weekend at the Mall of America – a walk around the mall to raise money and get information. Gayle says as much as this walk is about research, what really excites her is to see people physically cheer her on.
For information on the Minnesota Walk to Defeat ALS, click here.
Source: CBS
