Sullivan to read from 'I Prefer to Laugh'; excerpts will shed light on living with ALS


Thursday, January 29, 2009
SANFORD — Gary Sullivan will share his experiences with living with Lou Gehrig's disease during a presentation at Louis B. Goodall Memorial Library on Wednesday, Feb. 4.

Sullivan will read excerpts from "I Prefer to Laugh," the manuscript that he has written that is an autobiographical account of the life he has lived since he was diagnosed with amyotrophic lateral sclerosis (ALS) in December of 2004.

Afterward, Sullivan will answer questions from the audience.

ALS is a disease of the nervous system that destroys the motor neurons that control voluntary muscle movement. When the motor neurons can no longer provide the impulses that muscles need in order to function, the muscle begins to deteriorate. The deterioration often begins in the extremities and eventually progresses throughout the body, causing paralysis of the arms and legs, difficulty swallowing, talking and breathing. Death usually results from respiratory complications, according to a guide published by the Muscular Dystrophy Association, ALS Division.

Sullivan, a lifelong resident of Sanford, recently helped found ALS Maine Collaborative, a statewide organization in Maine to help coordinate the services available to those with ALS and their caregivers, and at the same time support the groups and organizations that provide those services.

Since his diagnosis, he also has served as vice president of the ALS Association's Northern New England chapter.

As well, he has attended two of the association's annual conferences in Washington, D.C. During those conferences, Sullivan visited the offices of Maine's Senators and Congressman to lobby for a bill to create a national registry for people with ALS.

Sullivan's presentation will start at 6:30 p.m. at the library.

Goodall Library is located at 952 Main Street.

For more information, call 324-4714.


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Sullivan helps create ALS-Maine; new collaborative will connect patients and resources throughout the state

By Ellen W. Todd
Sanford News Writer


Thursday, January 15, 2009

[IMG][/IMG]
Ted Hissong, left, and Gary Sullivan are seen here at last summer's annual Gary Sullivan ALS Golf Tournament sponsored by the Hissong Corp. The tournament raised $25,000 for the fight against Lou Gehrig's disease; the proceeds will provide the financial basis for the ALS Maine Collaborative, which Sullivan, Orm Irish and Lee Urban recently founded. photo by Jane Berger





SANFORD — Gary Sullivan considers himself lucky — in a way.

In the spring of 2003, Sullivan began to notice some unusual symptoms. His foot began to drag when he walked, sometimes causing him to trip. He had had surgery for a pinched nerve in his back a short time before and thought at first the problem was somehow related to the surgery. It was not until December of 2004 that he was diagnosed with amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig's Disease.

The diagnosis was a death sentence.

ALS is a disease of the nervous system that, over time, destroys the motor neurons that control voluntary muscle movement. When the motor neurons can no longer provide the impulses that muscles need in order to function, the muscle begins to deteriorate. The deterioration often begins in the extremities and eventually progresses throughout the body, causing paralysis of the arms and legs, difficulty swallowing, talking and breathing. Death usually results from respiratory complications, according to a guide published by the Muscular Dystrophy Association, ALS Division.

Sullivan was told he probably had two to five more years.

"I don't say I'm blessed and I don't say I'm fortunate," Gary Sullivan said during an interview Monday. He points out the braces that support both feet, enabling him to walk but only with a cane or a walker.

"Eventually I won't be able to speak or swallow," he said.

But nearly six years after he began to notice the symptoms, he is still able to get around, to enjoy his family, including his two young grandchildren, and to work to improve the quality of life for other people diagnosed with ALS.

Since there is no cure for ALS and medical research has not yet discovered what causes it, many people who are told they have the disease just go home and wait to die.

"You get diagnosed, you go home and you shut the door," Sullivan said. "I don't blame them at all."

But it doesn't have to be that way.

Because of his experience on the board of directors of Goodall Hospital and his career as an educator, as well as his wife's work for the Visiting Nurses, Sullivan said he had more resources than most people do.

He served as vice president of the ALS Association's Northern New England chapter and got involved in lobbying for a bill to create a national registry for people with ALS.

He also knows about the services available for people with ALS — the services that can improve the quality of the years they have left, like occupational therapy, physical therapy, speech therapy, devices that can help as people begin to lose muscle strength and other things like making patients' homes safer and more accessible.

"The more I got involved with ALS, the more people I met," he said, which led him to become more concerned about those who don't have access to information and services.

Two of the people he met through his affiliation with the ALS Association were Orm Irish, whose wife was diagnosed with ALS and died several years ago, and Lee Urban, whose wife has ALS and is currently very ill.

The three men decided to create a statewide organization in Maine to help coordinate the services available to those with ALS and their caregivers, and at the same time support the groups and organizations that provide those services.

And so the ALS — Maine Collaborative was founded.

"The hope is to bring these groups together under a very loose organization," Sullivan said. " We don't expect anyone to give up anything — just to work together and talk together."

The ALS — Maine Collaborative was incorporated on Dec. 30 and so far two organizations have signed on with the new collaborative: e-Hope, which creates and facilitates "caregiver communities" to provide non-medical support to those who face life-threatening illnesses, and the Veterans Affairs of Maine.

The Department of Veterans Affairs recently acknowledged a general link between military service and ALS by agreeing to provide full disability, lifetime health and death benefits to all veterans diagnosed with ALS or Lou Gehrig's Disease. Recent studies show that veterans are more likely to get ALs than those in the general population, although a reason for the connection has not yet been determined.

The founding members of the ALS — Maine Collaborative are currently negotiating with other organizations, including the ALS Association Northern New England Chapter, Maine Health, Maine Hospice Council, Inc., the Muscular Dystrophy Association and Visiting Nurses, with the goal of getting them to join the collaborative effort.

Funding for the collaborative will be raised through annual ALS — Maine Golf Tournaments — currently three tournaments are planned, based on last year's successful Gary Sullivan ALS Golf Tournament held last summer in Wells, which raised $25,000 for the ALS Association of Northern New England. Hissong Development Corporation sponsored the tournament.

One of the first goals of the collaborative, Sullivan said, will be to create a database of persons with ALS and the towns in which they live in order to determine where services are needed. Then the state will be divided into service sections, so patients can be better served closer to where they live.

Other goals of the ALS — Maine Collaborative are:

q To establish ad hoc committees, where appropriate, to facilitate projects of the Collaborative.

q To establish an ALS information and referral center.

q To create an ALS~Maine Medical Advisory Board of physicians and allied health providers from throughout the state.

q To hold a statewide ALS~Maine conference for neurologists, physicians and applied health services.

q To develop a network of neurologists throughout the state who are interesting in expanding their knowledge in the areas of diagnosing, treating, and providing information and referral services for pALS.

q To provide statewide training to neurologists who are interested in developing an ALS subspecialty.


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