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.