Cheryl Cook‘s diagnosis proved heartbreaking and shocking, affecting every aspect of her life.
Battling symptoms for many years, the retired lawyer and Simsbury town leader officially was diagnosed with ALS this past April. She no longer can walk or feed herself and now needs oxygen at night.
Even so, Cook has not backed down from her commitments in the community, still serving as chair of the Simsbury Housing Authority and the DEI Council in town.
Named the town’s Hometown Hero this past summer, Cook was honored for her contributions from serving on the Board of Selectmen and the Aging and Disability Commission to her volunteer work with the Girl Scouts, the PTO and other areas.
Cook shared with the Courant the vulnerable and painful aspects of ALS, including the unknowns of her future, and how the neurodegenerative disease has robbed her of the ability to do the simplest tasks on her own. Still, her determination to keep going remains.
“They don’t know how to cure it and it is always fatal,” the 62-year-old said. “I try to remind myself when I start to think ‘why me,’ why not me? Why would someone have this and I wouldn’t?”
In Connecticut, roughly 400 people have been diagnosed with ALS, according to ALS United Connecticut.
Since her diagnosis, Cook has been a patient at the UConn Health ALS and MD program, which brings together multiple specialists to provide comprehensive care to patients with neuromuscular diseases.
Each patient visit is supported by a multidisciplinary team that includes neurologists, physiatrists, nursing, physical and occupational therapy, speech therapy, respiratory testing, nutrition, social work, and palliative care.
“It has done everything it possibly could for me,” she said. “They arrange for specialists to come to my house.”
Dr. Amanda Hernandez, division chief of neuromuscular medicine at UConn Health, said the multidisciplinary approach enables doctors to “come up with a good treatment plan that holistically addresses the patient’s disease.”
Tripping and falling
Cook knew something was not right when she kept tripping and falling. She originally thought it was simply arthritis in her foot after having surgery on her toes. But she never recovered.
She tried physical therapy but it did not work; symptoms first appeared in the right foot and then equally in the left.
Dr. Cristina Viguera Altolaguirre, a neurologist at UConn Health who leads the clinic, said ALS impacts the motor nerves and motor function, impacting movement, speech and ultimately breathing.
“It starts out affecting a limb like an arm or leg,” said Altolaguirre.
Other symptoms include patients’ hands getting a little clumsier and difficulties picking up their foot, then the rest of that limb and then slowly, over the course of months to years, progresses to different parts of the body, Altolaguirre said.
Three to five years is the average survival rate, according to Altolaguirre.
Hernandez cautioned that a lot of symptoms found in ALS are found in other neurological conditions.
Altolaguirre said some medications including Riluzole and Radicava can slow the disease’s progression by about 30%. She said there is renewed hope with gene therapies providing promise for those that carry the SOD1 mutation.
“Fewer than 500 people in the United States carry this mutation, but it was the first gene linked to ALS and the drug’s approval and use marked a major milestone in the ALS treatment landscape,” Altolaguirre said. She said the gene therapies can halt the disease for those that carry the SOD1 mutation.
Causes that are not entirely known
ALS is most common between the ages of 60 and the mid 80s, according to information from UConn Health.
While the causes of the disease are not entirely known, certain environmental factors have been associated with an increased risk of ALS, including smoking, environmental toxin exposure and military service, according to UConn Health.
For about 10% of people with ALS, a risk gene is “identified that was passed down from a family member.”
Cook said she learned that she did not carry the gene for ALS.
Representing those in the community
For 30 years, Cook served on the Connecticut Department of Developmental Disability Human Rights Commission as an attorney and parent of a child with Fragile X syndrome, a genetic disorder that is a common inherited form of autism.
“I joined the Fragile X Society of Connecticut as one of the founding members and we advocated for funding for research for Fragile X and that effort has been successful,” she said. “We went to D.C. every year and visited every senator and representative representing Connecticut and advocated for funding.”
Reflecting on her work in the community, Cook said that she has volunteered in almost every capacity in the town. She spent a lot of her time focused on social services, the food pantry and drug addiction programs for young adults.
Kevin Beal, selectmen in Simsbury, nominated Cook for the Hometown Heroes honor.
“She has been an advocate for people with disabilities for many years and she now finds herself in a situation where her ability and mobility has changed and her advocacy in that area prepared her for being aware of resources,” Beal said. “Even though she is being faced with some of these personal challenges, she has not pulled back from wanting to serve her community.”
Beal said Cook never shied away from difficult situations, including a 2019 incident when two students were seen on social media in blackface.
He said Cook did not sweep the problem under the rug as a selectman during the time.
As a result of the incident, Cook formed the Spirit Council which is now the DEI Council that she chairs, Beal said.
Cook said she focused on getting community leaders and students together to discuss the issue and come to a better understanding of each other.
“It was eye opening and inspired me to keep going with that work,” she said.
Changing homes
As ALS progressed, everyday life changed for Cook. She had to sell her home where she lived for 20 years with her family and move to a ranch-style house because she could no longer go up stairs.
Then she progressed to needing a wheelchair and needing help with cutting her food. In the last few weeks she was supplied oxygen at night.
“It is everything,” she said. “It is every muscle in your body atrophying. It affects how you talk, swallow and breathe. It affects your balance. I can’t reach things in the back of the wheelchair. I can’t get a dish down from a cabinet. I can’t even hold a regular knife anymore. There is nothing it does not affect.”
She said these days her electric toothbrush annoys her as she can’t even turn it on with her thumb.
She shared how she now has a BiPap machine to help her breathe at night.
“My lungs are diminishing in their capacity and I need oxygen,” she said. “I just had a feeding tube implanted in my stomach.”
Every morning to get out of bed her husband uses a special lift to aid her in getting into her wheelchair. The process takes 45 minutes each morning to get her ready for the day.
“It is hard to accept the help,” Cook said. “I was slow to do that. I have always been the person out there doing all the stuff, trying to help other people.”
With all the difficulties surrounding her, Cook said she redirects her mind every day with crosswords or reading. She has also formed her own book club.
Spending time with family and friends gives her strength.
She recently opened a card in the mail from friends which shows a picture of a group of women that states: “You have an army behind you.”
Community service means everything to Cook, who says she wants people to know that.
“It is part of giving back,” she said. “I feel like volunteering is something that everybody should think about — doing something for someone else.”
Altolaguirre reminds people not to give up.
“It is important to not lose hope and realize that ALS care is not ALS care 10-20 years ago,” she said. “We have made advancements in the understanding of ALS and the therapeutic landscape has grown tremendously and the clinical trials available have grown exponentially.”