Beverly's Patti Drinkwater Stays Positive In Face Of ALS Fight

BEVERLY, MA — It has been almost one full year since Patti Drinkwater heard the chilling words that struck her in such stark contrast to the warm, vibrant colors that used to light up the recently retired North Beverly Elementary School teacher's classroom.

"I suspect you have lower-limb ALS," was the news Drinkwater received while sitting in a neurologist's office on Oct. 29, 2020.

"For someone who was always moving and rarely sitting down, this news of having ALS was not something I could believe," she told Patch. "I drove home in a daze, wondering how I was going to share this news with my husband. Of course, it was a pretty emotional roller coaster for days, weeks, months after that conversation."

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disorder that affects nerve cells in the brain and the spinal cord. Diagnosis typically comes after ruling out potential other causes of worsening bouts of muscle weakness and loss of muscle control.

Making Drinkwater's diagnosis more challenging was the coronavirus pandemic that limited in-person specialist appointments and repeatedly postponed Zoom calls.

"I actually said to the doctor: 'Can you please call my daughter, Katie, and explain to her what you told me,'" Drinkwater said.

Yet, as someone known at North Beverly Elementary for her encouraging and uplifting voice, she soon became determined to face her uncertain future with a "Patti Party" instead of a relentless pity party. On Sunday, that Patti Party of more than a dozen members will head to Endicott College to take part in this year's North Shore Walk to Defeat ALS.

Drinkwater said she intends to "stroll" with the team using a motorized device to help her navigate the Beverly college campus.

"My positive attitude is because of the outpouring of love and support to help me to beat this disease not only from my family but friends and this community of Beverly," she said. "I am a very hopeful person, trying hard each day to find the beauty in each sunrise and go to sleep at night having good thoughts about what my day was filled with."

Drinkwater allowed the past year has included many sleepless nights, lots of tears, long talks, hugs and moments of feeling she had been caught in a bad dream. But she also made a promise to herself a year ago to cling to her husband, Al, and convince him that her condition would not ruin their lives together.

"My muscles might not be as strong, my steps are much slower, I wear a brace on my right foot, I can't walk without a cane or holding on tight to my husband's arm," she said. "I've been using a wheelchair or a scooter to make my way around town or to go to the bus stop to see my granddaughters off on their first day of school.

"I've taken quite a few falls, some a little harder than others. But I've always been able to get myself up."

She is also putting her faith in the first medications the U.S. Food and Drug Administration has approved for slowing the progression of the disease. She is about to begin an 11th infusion cycle of Radicava and takes a pill every 12 hours.

The hope is to prolong her battle long enough for researchers to find a treatment for the disorder for which there is currently no cure.

"I have so many people showing me I am not alone in this fight," she said. "I want to be the one who shows them I am a survivor of ALS."

Drinkwater said one major cog in her support system has been Nancy Frates, the Beverly mother of late ALS Ice Bucket Challenge co-founder Pete Frates. She said Nancy reached out to her and her family via Zoom within days of her diagnosis becoming public.

"Not only did Nancy immediately tell us how sorry she was but she said she would do anything she could to answer our questions, give us support, and let us know we're not alone in this fight," she said. "To say that there isn't a day that goes by that I don't think of Pete and try my best to be strong like he was is the honest truth.

"Because of him, I have had an opportunity to take the two medicines and be part of a clinical trial that Pete advocated for, but was never able to benefit for himself."

Pete Frates, a former St. John's Prep and Boston College star baseball player, was diagnosed with ALS in 2012, and in 2014 helped launch the ALS Ice Bucket Challenge, which is credited with raising awareness of the disease and more than $200 million for ALS research as of 2019.

He died from ALS complications in 2019. He was 33 years old.

Drinkwater said she tries her best to keep up with routines to stay as motivated and strong as possible.

"Between connecting with friends who are willing to come and help me around the house or transition my window boxes from summer to fall, every day seems to have a purpose," she said.

While she can no longer drive and uses a stair chair to get up to her bedroom, she still makes it up into the passenger seat of Al's pickup truck with the help of a little stool.

"I might not be able to run after my granddaughters on the beach but they sure had fun pushing me in my beach wheelchair down the ocean's edge this past summer," she said.

One small shuffle at a time, Drinkwater has vowed to press with her daily life, her beloved family, her dear friends and events like Sunday’s North Shore Walk to Defeat ALS that continue to raise money for ALS research so when that ultimate breakthrough comes, she will have done everything in her power to be there to make the absolute most of it.

"A cure is near," she said. "I just need to be hopeful just like so many pALS (people with ALS), given the same diagnosis as mine, who continue to fight each day to take a step, or to take a breath, or those who can do neither.

"Today I am lucky. And I don't want to waste a minute."

Did you find this article useful? Invite a friend to subscribe to Patch.

Scott Souza is a Patch field editor covering Beverly, Danvers, Marblehead, Peabody, Salem and Swampscott. He can be reached at Scott.Souza@Patch.com. Twitter: @Scott_Souza.