Editor’s note: This story is related to another story on Wetern’s research in MSA from the point of view of a research students and her work with another MSA patient. You may read the story here.
When Frank Cervone’s doctors told him they thought he had Multiple System Atrophy (MSA) and wouldn’t live through Christmas 2011, he replied, “Well, then I better get busy telling people about it and affecting a change!” And that is exactly what he’s done.
Cervone posts on the blog hollywoodrepublican.net and recounted his diagnosis of the disease there…”You know you’re about to have a bad day when the doctor asks if you can wait a few minutes until they see their last patient because they need to talk to you. Your mind is racing to every disease you’ve ever heard of and trying to remember the symptoms to see if they fit what you feel. Then the door opens and the doctor walks in.
“There must be a class in medical school titled: ‘How to Tell a Patient They are Going to Die.’
It goes like this. Pull your stool up real close, lean forward, and speak in four word sentences.
“It’s Multiple System Atrophy.”
“I am so sorry.”
“Frank, you have MSA.”
“There is no treatment.”
Long pause…. “There is no cure.”
“I am so sorry.”
“Wait!! Back up. What did you say? Multiple System Atrophy? MSA? What the hell is MSA? Dying? From something I’ve never even heard of? Dying? I’m 48 years old! There must be a mistake.”
“I am so sorry.”
Cervone suffers from a primarily autonomic version of the disease, which causes the slow and paralyzing shutdown of the body’s major autonomic systems like breathing, organ functions, brain functions and more. He searched far and wide for partners in his quest to learn more about possible treatments and developments in active research, and chose WMU when a personal response from Professor Charles Ide of the Department of Biological Sciences at WMU explained his team’s newest findings. Ide is Gwen Frostic professor of biological sciences and director of the Great Lakes Environmental and Molecular Sciences Center.
Once Cervone heard of Ide’s work, he chose WMU as the recipient of funds raised by a 5-mile run in Dayton, Ohio to benefit MSA research.
“It all started with the smell of meatballs,” recounts Cervone on the impetus for the run. “We were campaigning door-to-door when I smelled a fabulous smell…(Cervone (R) was Councilman for the City of Fairborn, Ohio), and I had to find out where it was coming from. We headed straight for that house, I can tell you, and once there, we met a lady who knew someone, who knew someone, who knew a run organizer, who might be interested in helping organize a run for MSA.”
Enter Doug Brandt of the Dayton Barefoot Runners. Brandt heard of Cervone’s plight and volunteered to hold the race in March. Thus began the annual MSA Run/Walk. Cervone humbly explains, “Our gift of $3,350 from the run to the University was made possible by over 200 participants. It’s not a lot of money, but maybe it’s enough to fund a graduate student or a trip to a professional conference on MSA research.”
Cervone who worked at one time as a landscaper, discussed with Ide his exposure to pesticides as a potential cause of MSA.
Ide and his team have shown that changes at the molecular and cellular level in MSA brain cells are equivalent to those caused by exposure to certain pesticides. “We’ve been able to take cells from MSA or control tissues, remove the ‘messenger’ RNA (Ribonucleic acid) which turns into proteins, and show that RNAs and proteins that make energy and get rid of misfolded proteins are way down in MSA cells, like in pesticide treated cells. Conversely, mRNAs and proteins that turn on an immune response are way up in MSA, including those that are sometimes involved in autoimmune diseases such as Multiple Sclerosis,” said Ide.
While Cervone’s visit to WMU with Brandt, wife Susan, and daughter Angelina boosted everyone’s spirits—Cervone appeared hale and hearty to the casual viewer—Susan pointed out the toll daily activities and travel take on her husband’s life. “Today he looks and sounds and acts great,” she said. “Once we get home, it’s very likely he’ll be in a coma-like state for anywhere from a few days to a week. The disease takes that much out of him.”
Research on MSA is moving along steadily, and there are definitely high points with each new discovery…hopefully some of those discoveries will be made by WMU and will benefit Cervone and those sufferers of MSA who come after him.