Daily struggle
http://www.2theadvocate.com/features/63651172.html?showAll=y&c=y
Couple fights ALS in life and local event
- By ELLYN COUVILLION
- Advocate staff writer
- Published: Oct 7, 2009 - Page: 1D
In Greg and Dawn Pitkin’s wood frame house near City Park, it’s quiet and peaceful. A beautiful, silver-gray cat curled up on a chair sleeps near her owners.
But a fierce struggle takes place daily in the Pitkin home, against the disease amyotrophic lateral sclerosis, commonly referred to as Lou Gehrig’s disease.
Greg Pitkin was diagnosed a little more than four years ago at the age of 30.
ALS is a fatal, progressive neuromuscular disease for which there is currently no cure, according to the local ALS Association.
Since the disease affects nerve cells in the brain and spinal cord, patients in the later stages of ALS may become totally paralyzed.
Looking back on the early days of Greg’s diagnosis, Dawn says, “It was a very difficult time, but we got through it by leaning on each other and (being) with family and friends — and came out on the other side.”
Every year, people across the country participate in “Walk to Defeat ALS,” the signature fundraising event of the national ALS Association, to raise funds for research and patient services in the struggle against the disease.
Dawn and Greg will participate in the local event this year, as they have the last several years, with their team called “Pitkin’s Parade.”
Coordinated by the ALS Association Louisiana-Mississippi Chapter, it will be held Saturday, Oct. 17, at the LSU School of Veterinary Medicine.
Greg, a native of upstate New York, embraced Louisiana and Baton Rouge culture wholeheartedly when he came here to work at Georgia-Pacific Port Hudson Operations in Zachary, Dawn said.
The couple are great fans of the St. Patrick’s Day parade that rolls in front of their house each year — so the name for their walk team came pretty easily, she said.
Last year, their team had about 80 participants, she said.
“It’s a wonderful reminder to us that we do have so many friends and family members,” Dawn said.
Research, she said, one of the primary goals of the ALS walks, is the “only way we can find a cure for this killer.”
Since Greg’s speech has been affected by ALS, Dawn communicates to others for him; she understands what he’s saying when others cannot.
Greg’s eyes, though, communicate in a straightforward way. They still twinkle with humor; he smiles when he finds something funny.
One recent afternoon, he reminded Dawn to show a visitor a framed magazine cover that hangs on the living room wall by the front door.
It has a special meaning for the couple — they met in a local cigar shop after one of Dawn’s friends asked to borrow such a magazine, a local one no longer published, from Greg.
Later, he got a copy from the magazine publisher and had the cover framed for Dawn for their first anniversary.
He smiles at her as she tells the story.
Some things the disease can’t touch.
Greg holds two degrees, in paper science engineering and chemical engineering, and was a superintendent of fine paper converting at Georgia-Pacific, before he had to step down about a year-and-a-half after his diagnosis.
In the fall of 2004, he had begun to experience muscle twitches in his upper right arm, Dawn said.
After running some initial medical tests, Greg’s primary physician sent him to a neurologist, who eventually gave the couple the diagnosis of ALS, she said.
Their feelings were ones of “shock, complete shock,” Dawn said.
“I don’t know how else to describe it,” she said. “When that diagnosis is presented at the beginning, it is often accompanied by a feeling of hopelessness. There’s no cure, no treatment.”
Greg’s neurologist encouraged them to get other opinions. They saw two other specialists, one in New Orleans and one in Houston, who both confirmed the diagnosis, Dawn said.
She said she thinks the time they spent in seeking other medical opinions helped them to begin to accept the situation.
At one point, Greg participated in a pharmaceutical trial in Houston.
He was convinced, though, that he was taking the placebo the whole time, Dawn said.
Greg smiles.
“His sense of humor — that’s one of the things that has gotten us through it,” she said.
“Greg has been such a good patient and the ALS Association has helped us out tremendously,” Dawn said.
The local ALS chapter maintains a “loan closet” of durable medical equipment, offers a respite-care grant program, holds support group meetings, and promotes advocacy and public policy for patients with ALS, among other services.
Kelly Viator, executive director of the ALS Association Louisiana-Mississippi Chapter, said that “Dawn and Greg are just a remarkable couple. They love each other so much.”
“He is so encouraging, through his spirit, to help everyone else who has the disease,” Viator said.
Dawn and her father, Terry Singer and his wife, Terri, have also been active advocates for those with ALS. For instance, the family collected helpful information on specific issues for those patients and their families and presenting it at an annual ALS symposium, said Viator.
Dawn, an accountant with Screening Systems International of Slaughter, a manufacturer of industrial water screening systems, has been able to take a sabbatical from her job, to be home with Greg, something that is her “responsibility and joy,” she said.
Greg is unable to walk, and the use of his hands has also been affected, she said.
A feeding tube supplies his nutrition, and a hydraulic lift, on loan from the ALS Association, helps him to be moved from his recliner to his wheelchair, Dawn said.
Greg wears a special mask at night, with oxygen, that helps him breathe, she said.
In July, he entered the local St. Joseph Hospice program.
“It was a hard decision to make,” Dawn said.
While a hospice program is associated with end-of-life care, she said, “a whole lot of that is caring for the whole person.”
The hospice staff was able to adjust Greg’s medicine, for example, so that he can sleep better at night, which has made a huge difference for him, Dawn said.
“He got his smile back,” she said, and the couple has been able to take some outings in their specially equipped van.
In his tenure at Georgia-Pacific Port Hudson Operations, Greg was known as someone who would “literally do anything for you,” said Patty Prats-Swanson, public affairs manager for the Georgia-Pacific site in Zachary.
Prats-Swanson is co-chair of the upcoming Walk to Defeat ALS event, and many Georgia-Pacific employees will be part of the Pitkin’s Parade team, she said.
Dawn said that as she and Greg deal daily with the disease, they’re able to keep their emotional balance “most of the time,” with the help of family and friends and the ALS Association.
“Most of the time, we have a good day. When one of us has a bad day, the other one pulls us back from the ‘ledge,’ ” she said.
“We are surrounded by a lot of people that make a big difference for us,” she said.
For more information about ALS or the national ALS Association, call
1-800-782-4747 or go to the Web site,
http://www.alsa.org. The ALS Association Louisiana-Mississippi Chapter,
with offices at 640 Main St., Suite 101 in Baton Rouge, can be reached at
(225) 343-9880 or (800) 891-3746.
~Best viewed with a positive attitude~