PERU -"It changes your perspective on life, which isn't totally a bad thing," Darlene Long said. She was talking about how life has changed for her and her family after finding out that her husband, Roger, had Amyotrophic lateral sclerosis, known as ALS or Lou Gerhig's Disease, in May of 2009.
"ALScan functionally devastate families," Darlene Long said. "Those with the disease lose their independence and that need help. We count our blessings every day because I was able to retire and become the primary caregiver for my husband."
Long also said that she and her husband also want to help others whose families are dealing with the disease.
"We need to work together to stop accepting this diagnosis and do what we can to change the circumstances," Roger said.
"We have a golf tournament that we started last year, and we did not put our name on it because we want it to be about everyone in the North Country who has dealt or has to deal with the disease," Darlene said. " In our area is a pocket of the country where ALS victim numbers are greater than the national norm."
The second annual ALS Golf Tournament will be held at the Harmony Golf Course in Port Kent on Saturday, July 23 to support research and to raise hope.
"Together we can make a difference," Darlene said. "With under 200,000 cases a year, the disease does not get a lot of funding a research support. It takes a lot of grass-roots fundraising and awareness to advance the cause."
Long said that there are a lot of people who "live quietly" with the disease, and her hope is that through awareness, there will be more assistance for all of the families dealing with the disease.
"I don't think that anyone is prepared for or expects a diagnosis for a terminal illness," Long said. "A lot of people, when they hear of ALS, picture Lou Gerhig standing in front of the microphone at Yankee Stadium saying he was the luckiest man in the world. He was talking about the fans then. He faded away after that."
Since 2009, Darlene said that she and Roger have enjoyed the support of their friends and family.
"We have a wonderful family and incredible friends who have been there every step of the way," she said. "It's weird because when I was teaching, there was a pair of sixth-graders who did a report on Lou Gerhig's Disease and even interviewed a doctor. When you look at 15 years afterwards I am being affected by the same disease, it's kind of erie in a way."