by Sue Ann Rybak
Paula Barvin, 57, of Elkins Park, sits in her kitchen reading from a card in her scrapbook: “Sometimes the only sense you can make out of life is a sense of humor.”
“It’s one of my favorite quotes,” said Barvin, who was recently diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease. It is a progressive, neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. As the cells die, patients lose voluntary muscle control and movement and eventually become totally paralyzed. Despite muscle damage, most patients minds remain keen and alert.
“Part of what is so nice about the cards from people at work is that they remind me of the strength that I showed in my work and it encourages me to apply it to this situation,” said Barvin, who worked for 30 years as a regional coordinator directing canvassing for environmental and other nonprofit groups.
Barvin is not unfamiliar with ALS – her older brother Bill died of it 13 years ago at the age of 47. At the time, doctors believed it was sporadic, but now her doctors believe there may be a genetic link.
In 90 percent of all ALS cases, the disease strikes patients with indiscriminate ferocity. ALS can strike anyone at anytime. Patients with the sporadic form of the disease do not have a family history of ALS.
In 10 percent of cases, there is a genetic mutation that can be familial. Barvin’s doctors are testing her blood to see if Bill and Paula share this mutation.
According to the National Institute of Neurological Disorders and Stroke, “About one-third of all familial cases (and a small percentage of sporadic cases) result from a defect in a gene known as “chromosome 9 open reading frame 72,” or C9orf72. The function of this gene is still unknown. Another 20 percent of familial cases result from mutations in the gene that encodes the enzyme copper-zinc superoxide dismutase 1 (SOD1).”
“There is no test for ALS,” said Barvin, who is a member of the Cheltenham School Board. “It is a diagnosis of exclusion.”
She said initially, her family hoped it was a severe form of Lyme disease.
“But, the elephant in the room was always ALS,” Barvin said.
Barvin said she tries to be optimistic about the future, but she can not ignore the statistics, life expectancy for ALS patients is two to five years. Despite the odds, Barvin is determined to live every day to the fullest. And she focuses on what she can do.
Barvin continues to work and said she is thankful for the support she has received from the school board and the superintendent.
“They have hired a wonderful woman, Hillary, to transport me to meetings,” Barvin said. “When I told our superintendent that I would continue serving until I could no longer speak, she replied, ‘Oh, they have all sorts of assistive devices, now.’”
Barvin said living with ALS has taught her how much of life she can still enjoy.
“I do feel fortunate, even as a former tennis player, hiker and cross-country skier, that it started in my feet,” said Barvin, who has lost her voice since our initial interview in January. “That allows me more time to sustain my zest for life. Still, it is a degenerative disease – I forgo the life I used to lead. Losing motor control in my hands means my husband has to help me get dressed and put me in bed. I’ve lost my ability to alter my sleeping position during the night. I don’t do anything by myself. For safety reasons, I wait until someone is here to even go the bathroom.”
Barvin wrote in an email that her “zest for life and the love and support of friends and family” is what helps her persevere through life’s daily struggles.
“Playing Scrabble engages me with words, friends, competition and strategy,” Barvin said. “Some of my partners are former tennis partners. “I now teach Dan, [her husband],Tamelia [ her caretaker] and my friends how to cook and bake, instead of doing it myself.”
Recently, Barvin attended a party with 35 friends from Washington, D.C., at the hotel Staybridge Suites in Virginia. She said the hotel let them use the lobby for no charge.
“At the party, they [friends] told stories about what they learned from me and how I had influenced their lives,” Barvin said.
Barvin said it was just one example of the love and support she continues to receive from her family and friends.
“The hardest part is that it [ALS] is degenerative [and] that my body isn’t able to do simple things like turn over in bed,” Barvin said.
She added while there is no cure for ALS, there is hope.
“I do have some hope now that my doctor knows the mutation that causes my illness,” Barvin wrote in a recent email. “She is working on a cure. Whether it will be discovered in time for me, I don’t know.”
Barvin said the message she wants to convey to other people living with ALS is “to continue to celebrate the life that you still have. Focus on what you can do. Accept the love and support of your friends and family.”