New ALS support group starting locally - Press-Republican: Local News

New ALS support group starting locally

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Posted: Tuesday, September 3, 2013 3:26 am

PLATTSBURGH — Lou Gehrig’s disease can be as traumatic a diagnosis that a person can receive.

Also known as amyotrophic lateral sclerosis, or ALS, the disease that has no cure and offers patients little hope for survival.

It’s a diagnosis that can also weigh heavily on loved ones who often bear the responsibility of caring for a person as the disease progressively worsens.

Donna Pearce, whose son, David, was diagnosed with ALS earlier this year, has organized a support group for patients and their caregivers who are dealing with ALS and other neuromuscular diseases.

The group, which meets on the second Thursday of each month at the Newman Center in Plattsburgh beginning Sept. 12, offers community members a chance to share their experiences in dealing with the debilitating disease.

“There is nothing available in our community (in the way of an organized support group),” said Pearce, a registered nurse, as she spoke of the steps she has taken to organize the new group.

“My philosophy is that we could get together as a group, caregivers and our patients, and offer recommendations for dealing with the day-to-day care for people with ALS and other degenerative diseases.”

“When you’re diagnosed with ALS, you feel all alone out there,” said David’s sister, Ellen Gordon. “There are not a lot of approved drugs out there for the treatment of ALS. With the support group, people could talk about how they are dealing with symptoms, the long-term effects of ALS.

“For us ‘newbies,’ we can learn so much from them, what worked and what didn’t,” she added.

David’s family had started to notice some changes in his behavior last fall, some hesitance in his speech and unexplained weight loss, for instance. Then, when family members came home to visit for Christmas, they recognized obvious changes that loved ones close to David on a daily basis might not have picked up on.

“He was losing dexterity in his hands and was having problems with speech,” Gordon said. “He had a slower, much softer voice.”

David finally agreed that he had to visit the doctor’s to find out what was happening, and the diagnosis was made relatively quickly.

“He’s got an amazing outlook,” Gordon said of David’s resilience following the diagnosis. “He will continue to fight with all that he can.”

David is the primary caregiver for his 3-year-old son, Michael, and that father-son bond has been his biggest strength in battling ALS, Donna said.

“He’s trying to do everything he can (with Michael) while he can,” she said.

Donna has worked closely with the ALS Clinic at Fletcher Allen Health Care in Burlington, Vt., and has received support from clinic nurse Ruth Ann Rhodes.

The support group will work on improving the participants’ education of ALS and will invite experts in the field to present information during upcoming meetings.

The meetings are free and open to all who have experienced the complications associated with the progression of the disease.

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The Plattsburgh ALS Support Group will meet at 7 p.m. on the second Thursday of the month at the Newman Center, 90 Broad St. in Plattsburgh. 

The first meeting will be Sept. 12. For more information, contact Donna Pearce at 643-2327 or