Experiencing a lot of trauma in her life, especially the murder of her grandson, Derrek, Zullo thought the condition might have been triggered by stress. Physicians initially thought it was acid reflux, then neurula myasthenia gravis, a muscular disease. Next they considered post polio syndrome, and even a stroke.
"Then a neurologist in Asheville suggested it might be progressive bulbar palsy. I had no idea what that was, but after visits to doctors at Emory Clinic and Brown University, I learned that it's a form of ALS."
Nobody knows for sure what causes ALS. In Waters' case, some suspected chemicals on the San Francisco 49ers football field, where he played professionally during the 1960s. In Zullo's case, theories have stemmed from amalgams in her teeth fillings to mercury to a virus. She thinks toxins in the air could play a large part.
"The losing of speech is very difficult to accept," Zullo wrote. "Without speech, it is very easy to feel like a spectator, like you are on the outside watching the world go by. Luckily, my friends are very understanding and include me in their activities."
It tickles her, Zullo wrote, "when I start to write, people think that I can't hear so they yell at me. I have one friend who is almost deaf who says she loves to 'talk' with me because she 'hears' every word I write on my slate."
Like Morrie Schwartz of the "Tuesdays with Morrie" fame, Zullo remains incredibly upbeat. "I take one day at a time," she explained. "And I seem to find more humor in life, even the small things, than I did before. I'll watch people and get tickled with them."
More than ever before, Zullo relishes the simple pleasures. One of her greatest joys is the incredible view from her mountain top home. Her husband, Tony, and some friends are rebuilding a deck that overlooks Sylva and all the way to Double Top Mountain.
"The view changes every hour, every day," she scribbled on her slate.
Many of those spectacular views she captured with oils on canvas. "But I don't have many of her paintings here at the house," said her husband. "Marilyn gives them all away - especially to the kids."
This couple, who will celebrate their 51st anniversary in June, has five sons - David, who lives in Sabastian, Fla., Mark in North Attleboro, Mass., Jimmy in Long Island, N.J., Paul in Weaverville and Kenny here in Sylva - and 10 grandchildren.
"I met Marilyn when she was a freshman at the University of New Hampshire. I'm an old-fashioned Italian - I wanted a wife who would stay home, take care of the house and cook for me," he said, with affection and obvious pride for his lifetime companion.
"Seems like I've always been married," his wife wrote with happiness in her fingers and eyes.
Along with losing her voice, Zullo lost the capacity to swallow and now has to be fed through a tube in her stomach.
"That's a bummer," she lets you know right away. "I used to be like the little boy Mikey in the commercials who would eat everything. You know, 'oh, give it to Marilyn, she'll try it.' What I hate is watching the pizza ads on television. It makes me hungry for one. And I miss fried clams and scallops. Tony used to get me Turtle Track ice cream each evening and I've had to give that up, too."
But the ever-positive Zullo added, "I lost weight. That was good at first, but I don't need to lose any more now."
At night she sleeps with a device called a "Bipap" that forces air through her lungs. She wears a brace on her left leg, and her left hand is becoming weaker.
"My mobility is going now," she wrote. "First it was my voice, then eating, now mobility. It seems like things are being taken away step by step."
Since ALS does not affect the mind, it's almost like being a prisoner in your own body.
Doctors have her on Rilutex, which is not a cure, she is quick to point out. "But it does slow the dying of nerves." A month's supply of 60 tablets cost $750. "I feel very fortunate to have insurance," she wrote. "Can you imagine having to pay those expenses out of your pocket?"
According to the ALS Association, the financial costs to families of persons with ALS can cost up to $200,000 a year.
ALS strikes one out of every 100,000 people, with 5,000 expected to contract the disease this year. About 80 percent of those diagnosed will die within five years.
While she doesn't know anybody else around here with ALS, Zullo has found strength in a support group that meets at 2 p.m. the second Sunday of alternative months at Thoms Rehab Hospital in Asheville. "Five people were in the class when I first started; of those five, three have already died," Zullo noted.
Every three months Zullo is evaluated at the ALS Clinic at Bowman Gray.
"As this disease progresses, it takes a lot of care. But I don't want to be a burden. I don't want some ventilator or machine to keep me alive.
Many people live longer because of these devices, but the quality of life is important to me. If I were younger, I might be more receptive to these means of prolong my life," she said.
Zullo uses her remaining strength to advocate for ALS awareness and funding research. The N.C. ALS Chapter will be represented in Washington, D.C., May 17-21 during the ALS conference and rally, and May 18 has been designated ALS Advocacy Day in Washington as people meet with senators and representatives about ALS concerns.
Last year, during National Advocacy Day, 200 members of Congress signed the ALS Treatment and Assistance Act-H.R. 353. That bill and the Senate companion bill, S.1074, provides Medicare coverage of out-patient drugs and waives the 24-month waiting period for Medicare eligibility for ALS patients.
For information about the Washington event, call 1-877-444-ALSA. To find out more about ALS, call Alice Green at (828) 298-1863; June Thompson at (919) 362-6526; or visit the website at www.alsa.org.
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Herald photo by Rose Hooper