August 27, 2001
By:Brian S. Schubert, Special to the Town Crier
First, you don't have anything going for you. You can't believe it. I was active all my life," said Jack Abbruzzesse of Newington.
"I was chilled to the bone, frozen with fear," said Anita Nesci, a Newington native now living in Farmington.
Abbruzzesse and Nesci suffer from multiple sclerosis, a chronic, often disabling disease that attacks the central nervous system. And their reactions to their diagnoses, which used to be a process of guesswork but has now greatly improved due to MRI technology, are common and frightening.
Diagnosis is only the beginning. There is no certain cure for MS yet, and the progress, severity, and specific symptoms of any one case of MS is as random as the lottery.
But since 1962, area residents have had a salvation in the form of a simple phone call to the Newington-based greater Connecticut chapter of the National MS Society.
The far-reaching importance of that first phone call cannot be understated for the more than 3,000 MS sufferers in Connecticut.
"You don't feel like you're the only person in the world," Nesci said, who also volunteers at the chapter's Newington offices.
Indeed, contacting the chapter opens an abundance of programs and information for MS sufferers, including the award-winning "Moving Forward," a primer on the disease for the newly-diagnosed as well as their friends and family.
The chapter organizes support groups all over the state, rap sessions where MS sufferers can speak to each other in their own peculiar language. Nesci said she sometimes has "fuzzy feet" or "phantom feelings," jargon with which only a fellow sufferer can fully understand and sympathize.
The symptoms and effects of MS are variable in both intensity and duration, and in order to save clients from having to purchase expensive medical equipment for a possibly temporary condition, the chapter maintains an equipment loan closet. It's a treasure chest of canes, walkers, wheelchairs, and scooters for clients to use during tough periods.
The MS society also lobbies for laws that meet the needs of the disabled, such as 1990's Americans with Disabilities Act. "You'd have to run your own advocacy" were it not for the MS society, Nesci said.
Because of their disabilities MS sufferers are often bedridden or confined to wheelchairs, deprived of the easy access to the outdoors and wild places most take for granted. Consequently, the chapter runs an annual vacation week at Camp Hemlocks in Hebron where the disease takes a back seat to camaraderie and a sense of normalcy.
But the chapter's greatest role is that of information resource. From answering one's first questions to updating clients on new therapies to putting someone in touch with a support group, the chapter maintains a vital two-way communication link.
The chapter is especially excited over a recent experimental surgery at Yale-New Haven hospital. Cells that generate myelin, an essential ingredient in brain function that MS sufferers often lack, were taken from a woman's ankle and transplanted in the brain. Surgeon Dr. Timothy Vollmer said the July 17-18 surgery went well but warned the procedure remains highly experimental.
"At this point we certainly don't want to give false hope because this is very early in the process," MS spokesman Gary Griffin said.
Abbruzzesse said until he phoned the greater Connecticut chapter he was stuck in a lottery at Hartford Hospital to receive his MS treatments. His calls to health professionals to find alternative treatment locations were for naught until the society steered him to a clinic at the UConn Health Center in Farmington.
"Even the places that are supposed to know don't know," Abbruzzesse said.
The society takes the fight to the disease every day, scheduling countless fund raisers and events to raise awareness and research dollars. Next week, along with Country 92.5, the chapter will host its first annual MS motorcycle ride from Windsor to Tolland. The money raised will help the chapter add a measure of predictability to an entirely unpredictable disease.
"When you think everything's going
wrong," said MS sufferer and Plainville resident Eric Wells, "there's a
©Newington Town Crier 2001
©Newington Town Crier 2001