May 25, 2013

Local dad diagnosed with ALS

Local father diagnosed with Lou Gehrig's disease

By JEFF MEYERS Press-Republican

---- — PLATTSBURGH — At 48, David Pearce was enjoying the wonder of parenthood.

He was the primary-care provider for his 3-year-old son, Michael, and the youngster had become the center of his life.

The challenges of caring for an energetic toddler became ever more complicated earlier this year when David was diagnosed with Lou Gehrig’s disease, or amyotrophic lateral sclerosis (ALS).

“Last July, we were at a family function and kind of noticed some slowness and delay in speech in David, along with a little bit of weight loss,” said his sister, Ellen Gordon. “We didn’t think that much about it, but again at Christmas, we noticed a bit of atrophy with his hands, difficulty zipping his coat.”

David’s weight loss seemed to be more dramatic at that time as well, and the normally quiet, reserved man told his loved ones that he was suffering from extreme fatigue.

“I noticed his speech was weak and slowed,” Ellen said. “He was having a lot of muscle twitching, and he knew that something was going on. He finally decided to go to the doctor to find out.”

After an initial doctor visit, he was referred to a Plattsburgh neurologist. Preliminary tests suggested David was battling Lou Gehrig’s disease, but he was referred to the ALS clinic in Burlington, Vt., where the diagnosis was confirmed in April.

“I remember calling my brother (after the diagnosis), and he was not totally on board with it,” Ellen said of David’s determination not to accept the dreaded diagnosis. “There are a lot of other things that can mimic ALS. It wasn’t until a month later and several more tests before everything else was ruled out.”

ALS, also referred to as a motor neuron disease, affects cells in the brain and spinal cord. Progressive degeneration destroys those cells, cutting off the brain’s ability to control muscles. In the later stages of the disease, the patient can become totally paralyzed.

There is no cure or treatment for the disease, and one FDA-approved drug slows the progress of ALS a bit. Other drugs are in various test stages as scientists continue to study the mysterious condition.

Several North Country residents have been diagnosed with ALS over the past decade. Ironically, there is a family connection with David’s diagnosis and a recent victim of the disease, Johnny Nixon of AuSable Forks.

“My husband (John Gordon) is cousins with Johnny Nixon,” Ellen said. “With that family connection, we have always been involved in supporting ALS research.”

Jennifer Furnia and Julie SantaMaria, sisters from AuSable Forks, started an annual fundraiser to support victims of ALS and their families following Nixon’s death in 2007. The Gordons and the Pearces have been active supporters of the event ever since, but this year’s edition has suddenly taken on a much more personal flavor.

“We’re always very involved, but this year it has helped us to take our minds off of all that is happening,” Ellen said.

The event, to be held Saturday, June 1, features a motorcycle ride by the Mountain Riders Motorcycle Club. The group will ride from North End Harley Davidson/Plattsburgh to Elks Lodge 2072 in Keeseville.

David hoped to ride with one of the motorcyclists but will now ride in one of the classic cars that will accompany the cyclists, Ellen said.

Michael will meet his father for dinner at the Elks Lodge, she added.

“He is a very quiet, private, reserved kind of guy,” Ellen said of her brother. “He’s in a lot of pain and is very, very tired, but at this point, he is thankful for every good day he has. Michael is what keeps him going, and he wants to make sure he is able to make some memories.”

Dinner will feature a chicken barbecue. There will also be raffles, a silent auction, entertainment and giveaways.

“The donations to the auction have been overwhelming thus far,” said volunteer Kelly Murphy. “Donations have been pouring in locally, throughout the state and even as far as the West Coast.”

Donated items include a “California Package” with lodging at the Beverly Hills Hotel and two tickets to see music performer Brad Paisely. 

Funds raised during the Motorcycle Rally and Poker Run will go directly to supporting David and Michael.

The Walk of Hope ALS research fundraiser is being held today at Trinity Park in Plattsburgh. Organizers across the state are hoping to raise $100,000 nationally and also raise awareness of ALS, Alzheimer’s, Parkinson’s, Huntington’s and all neurodegenerative diseases.

Email Jeff

IF YOU GO The seventh-annual ALS Motorcycle Rally and Poker Run will be held Saturday, June 1. Registration at North End Harley Davidson/Plattsburgh begins at 10 a.m., with riders departing along the way. Poker Run stations will be set up along the route. The ride ends at Elks Lodge 2072 in Keeseville with a barbecue lunch, entertainment, raffles and giveaways. Registration for the ride is $15 per bike and $5 per person. The Poker Run fee is $10 per person. Those wishing to attend the barbecue only can meet at the Elks Lodge at 1 p.m. A $10 donation per person is suggested. For more information, contact Art at 834-5716 or Jules at 420-9739.