Facing ALS, Massachusetts dad fights for his life - and maybe yours

Steve Pickett was playing golf in May of 2015 when he noticed his swing seemed off.

His arm muscles felt weak. He could tell something was wrong.

Pickett asked his doctor about it, who noticed muscle spasms and ordered a barrage of tests.

As the test results eliminated one condition after another over the following months, Pickett began Googling his symptoms.

“As I was looking things up online, I was saying to myself, anything, anything but ALS,” he said.

That October, the 58-year-old single father of three and Brockton native received the diagnosis – Amyotrophic Lateral Sclerosis.

Remembering, Pickett sighed.

“There’s no treatment or cure,” he said. “That’s kind of a tough one to swallow.”

On Thursday afternoon, Pickett sat in his living room, next to the wheelchair he hopes he won’t need for several more years. In the meantime, he plans to fight -- not just for himself, but others who face the same prognosis.

The disease has already robbed him of much of his independence, Pickett said.

“I can’t button a shirt or zip a pair of pants, and I have difficulty bringing food to my mouth,” he said. “It’s a psychological struggle, to say the least. I have to swallow an awful lot of pride.”

ALS is a degenerative disease that attacks motor neurons, which then are unable to send messages muscles in the body, and the muscles fail.

Right now, the disease primarily affects Pickett’s hands and arms, but over time, it will likely spread to his legs, and he will need a wheelchair.

Eventually, it will destroy his diaphragm, and he won’t be able to breathe, or it will stop his heart.

“There are no more easy days,” he said. “As bad as it is now, a month from now, it’s going to be worse.”

Pickett is not looking for pity, or even sympathy, he said.

He’s talking about his disease, and describing it in detail, because he is looking for action.

“This isn’t about me,” he said. “It’s about ALS, about finding a treatment.”

Pickett is the main spokesperson for ALS One, an organization dedicated to finding a treatment or cure for the disease through fundraising.

ALS One was founded just under a year ago by Hanover resident Kevin Gosnell, who was diagnosed with ALS in May 2015.

He brought together a group of doctors, researchers, and ALS caregivers, who are now working together to identify a treatment or cure within the next four years.

Gosnell died in August, but his work through ALS One is still going strong.

Dr. Robert Brown, who treats Pickett and is a member of the ALS One research team, said he thinks they will find a treatment for at least one type of ALS by 2020.

“I deeply believe that,” he said. “The current blend of therapies in the pipeline is encouraging.”

Pickett said he speaks about his disease and the organization as much as possible, because the more awareness there is, the more money they raise.

In the first year of its existence, ALS One raised $6 million dollars to prolong their team’s research, trials, and other work.

Pickett said they need to raise between $6 million and $10 million every year through 2020.

It’s not easy, but he’s determined, as Gosnell was, to get it done.

Pickett said he once asked Gosnell, “did you ever wonder what would have happened if somebody had done this 10 years ago?”

Gosnell had wondered, of course, and had come to the same conclusion as Pickett did: if somebody had started ALS One 10 years ago, they might be sick, but they wouldn’t be dying.

Pickett said he and Gosnell agreed, “it’s up to us to make sure that, 10 years from now, nobody is asking that question.”

Brown said working with patients like Pickett through ALS One is “humbling” and “profoundly motivating.”

Though it’s difficult to see his patients suffer through ALS, Brown said, “One takes solace that the lab work will yield enough to make a meaningful treatment possible.”

Brown added that he admires Pickett “enormously,” and he’s not alone in this sentiment.

Pickett is close with all three of his children, twin daughters Jessica and Kerry, 27, and son, Chris, 29.

Kerry, a nurse, said hearing her father had ALS was especially painful because she has seen the end stages of the disease, and she knows how hard it will get.

Kerry and her brother and sister were “shocked and devastated” to hear the ALS diagnosis, but over the following months, they followed their father’s lead.

“We’re all so proud of him,” Kerry said. “He’s been able to face such a terrible diagnosis with such dignity. His reaction helped us all to keep fighting and keep moving forward.”

Pickett said he’s “blessed” to have the support of his three children and of friends who would do anything for him.

He said, “if there’s a silver lining in ALS, and there aren’t many, it’s that I’ve seen the kindness and compassion that exists in the world. It’s utterly remarkable.”

Pickett’s friends and family participated in last year’s Falmouth Road Race and raised $255,000 for ALS One. His daughter Kerry ran the Boston Marathon for the cause, and his son Chris has taken over one of Pickett’s tool franchises since the diagnosis.

His friends even started a Facebook group to show their support for Pickett, called Friends of Pick.

“Because of my dad getting involved in ALS One, we’ve all gotten involved,” Kerry Pickett said. “it’s kind of what we’ve all latched onto, ALS One, as a way to cope.”

Now, Pickett, his family, and his friends are focused on making the most of the next few years, so one day, no one will face this death sentence.

“Kevin and I both knew that this wasn’t likely to benefit either one of us, and we were okay with that,” Pickett said. "We thought, if we can do something to help those after us, we’re okay with that.”

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