Muscular Dystrophy Association salutes Saratoga Springs wife and mother devoted to caring for her husband as he battles a neuromuscular disease
By SUZANNA LOURIE
SARATOGA SPRINGS — When her husband was diagnosed in 2006 with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, Kelly Ragan’s life changed forever.
Ragan soon found herself a full-time caregiver for her husband, Andrew, in addition to being a full-time wife and mother, as the neuromuscular disease claimed Andrew’s speech, motor skills and mobility.
“We’ve been fortunate in so many ways, and I’m lucky because I’m able to stay home with Andrew, but being a caregiver is honestly the hardest job I’ve ever done,” Ragan said. “It’s not easy; there are no vacations. You’re on all the time, and you’re watching someone you love deteriorate in front of your eyes, but you also have to stay strong for your family.”
Earlier this month, Ragan received a call from a staff member at St. Peter’s ALS Regional Center in Albany informing her that the national Muscular Dystrophy Association (MDA) had chosen her as one of 12 caregivers it planned to recognize as part of its MDA Salutes Caregivers campaign held each November.
“I’m honored to be a representative of the thousands of caregivers who are doing this for their loved ones who are battling ALS,” Ragan said. “I’m really thankful for the support we’ve had because it makes the dark days not so dark, and we do have lots of happy days.”
St. Peter’s ALS Regional Center recently became affiliated with the Albany chapter of the MDA, which has more than 200 offices nationwide.
Muscular dystrophy disorders are muscle diseases — ALS being just one of many — that cause the progressive weakening of the musculoskeletal system.
When Kelly first met her future husband in college, she never imagined someone as athletic and healthy as Andrew would be diagnosed with a disease as physically crippling as ALS. The pair dated for seven years before getting married, and they eventually moved to Saratoga Springs to be close to Andrew’s job with General Electric Co.
“He was involved in every sport,” Ragan said. “We did a lot of tandem bike-riding fundraisers. That was kind of our thing.”
While traveling for work in 2006, Andrew noticed something wasn’t right.
“He would call me and his voice was slurred. I thought maybe he had a couple of cocktails, but he said, ‘No, Kelly, this is getting worse,’ ” Ragan recalled.
When he returned home, the couple thought Andrew’s voice problem was the result of a bad sinus infection until they were referred to a neurologist after seeing countless doctors in the area.
“You always kind of think it’s something small or not a big deal. We were both healthy, happy, vibrant and working young people with two little boys,” Ragan said. “I guess you could say we were in denial until 2006 when he received the diagnosis of ALS from a doctor in New York City. (The doctor) told us to get our affairs in order because you’re basically handed a death sentence when diagnosed with ALS,” she said.
Currently, there is no cure for the disease and the one medication on the market can, at best, give a patient several more months to live. Despite the fatal diagnosis, Ragan sought out every option and alternative treatment.
Still, the disease progressed. Today, Andrew requires a special wheelchair, feeding tube and computerized communication system that he can control with eye movements.
“Within six months he went from a cane to a walker to a wheelchair and had to retire from his job, which was frightening having the kids and a mortgage to pay for,” Ragan said.
Five years ago, doctors said Andrew had three to five years left to live.
Ragan has adjusted to being his full-time care-giver, acting as her husband’s arms, legs and voice. A hospice worker helps for 90 minutes each day, giving Ragan time to run errands, clean or just sit down.
Although Ragan doesn’t know who nominated her, MDA Supports Caregivers coordinator Ali Santander and a team of staff members at the MDA national headquarters in Arizona felt Ragan’s story of courage and dedication deserved national recognition.
“Kelly was chosen because she’s been so strong and has dedicated her life to giving (Andrew) the quality of life he deserves,” Santander said. “It’s our way of saying thank you to the caregivers, and for the MDA community it’s a nice way for us to recognize their hard work because it’s truly remarkable what they do for family members and loved ones.”
Ragan is one of 12 finalists chosen from the hundreds nominated by a local ALS center staff member who works with the caregiver and the area MDA branch.
“The MDA/ALS center has been an absolute lifeline to our family,” Ragan said. “ALS can be devastating financially and emotionally, and they have provided us with a high-tech wheelchair that makes my husband more comfortable and my caregiving responsibilities manageable.
“I’m in awe of my husband every day — he has battled this disease with determination and integrity and he gives me strength every day. ALS is still a life sentence, but I’m determined to carry on the fight no matter what.”