Thank you for helping me reach my Walk to Defeat ALS fundraising goal! The Walk to Defeat ALS raises funds to support those affected by ALS and to spread awareness of the urgency to find treatments and a cure.

WHY I WALK:

MY COUSIN GREG's STORY

Before the diagnosis, Greg Allin was a most active man. He skied, hiked, fished, canoed, kayaked and surfed. He was a certified rescue scuba diver. Together with his wife and children, he loved pretty much everything outdoors. Then, in February 2019, he started having difficulty moving the fingers of his left hand.

“I didn’t think too much of it,” Allin, 59, said in a recent virtual interview with The Providence Journal. “I thought maybe I had a little bit of carpal tunnel,” a syndrome involving weakness and tingling that can be caused by repetitive motion stress, such as from typing.

In June 2019, he visited his primary care physician, who on learning the symptoms referred him to a neurologist. That specialist referred him to another, who diagnosed amyotrophic lateral sclerosis, ALS, an incurable disease of unknown cause that robs movement, speech and breathing as it progresses inevitably to death, typically within three to five years of diagnosis.

Depression and denial sometimes follow diagnosis, understandably. Greg’s response was motivation — to do what he could in the time he has left to help support patients and families and advance research into this condition that is sometimes called Lou Gehrig’s disease, after the New York Yankees Hall-of-Famer who died of ALS in 1941.

“ALS is eventually going to take my life but not today, so let’s get something done,” he told The Journal.

This summer, that something is the CEO Soak, a national fundraising effort by the ALS Association, a successor to the Ice Bucket Challenge.  “The CEO Soak is so important because the only thing that is going to solve ALS is funding and we need that help because we don’t have that much time,” Allin said.

Now, he relies on his family more than ever. “I’m his primary caregiver,” said Gail, his wife of 35 years. “I had a part-time job, which I've left.”

Her husband’s needs now, she said, are “all things that most people take for granted. You get up, you shower, you shave, you eat, you get dressed — these are all things that he needs assistance with now. He'll wake up in the night and he doesn't have the strength to pull a blanket up over him if he's cold.”

Gail spoke of the toll on Greg and “the whole family both emotionally and financially. It's really tough to watch, but he's a determined soul and he will do anything to help the cause. Whether it helps him or if it doesn't help him, in time it will help someone else down the road. He will do whatever it takes to get that job done.”

Said Greg: “ALS is not a one-person disease. It involves a whole family.”

 

(Story taken from Providence Journal article 6/21/21)