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.”
By SUZANNA LOURIE
SCHUYLERVILLE — Schuylerville resident Suzanne Nelson only had a few blissful hours with her firstborn, Jaden, before the panic attacks set in.
“It was terrible. I had no idea what was happening to me,” said Nelson, who was living in Colorado at the time.
It was years before she could label the nightmare that ensued as severe postpartum depression.
So severe that early this summer, Nelson teamed up with Hoosick Falls resident and fellow postpartum anxiety survivor Amy Breese to found the budding not-for-profit Shades of Light, a Capital District support network for women suffering from postpartum disorders.
In telling her story, Nelson said she not only hopes to generate awareness about Shades of Light, but also to help women realize help is available.
“I hope people can hear my story and realize they’re not crazy, they’re not alone and realize something is wrong and they need to get help,” she said.
The story continues a week after Jaden’s birth, when Nelson’s panic attacks grew into nonstop crying, extreme anxiety and irrational fears of the baby dying.
“It was this overwhelming feeling of doom — constant thoughts, terrible, terrible thoughts,” she recalled.
By two months, Nelson’s health was deteriorating. She would go days without sleep, her hair was falling out and she dropped to a weight so low it caused cardiac complications.
“The doctors would say I must be bipolar and say maybe you should be put in a psych ward,” she said.
It was four months before a therapist suggested Nelson get her thyroid tested. Sure enough, her physical symptoms were a biochemical illness and a hormonal imbalance known as Postpartum Graves Disease, which had led the body to attack the thyroid.
“We tried all sorts of med therapies, but nothing worked, so they ended up having to eradiate — basically kill — my thyroid,” she said.
That was seven months after giving birth. With daily medication, Nelson’s strength started to return. After 18 months, Nelson said, she could consider herself normal.
Once settling in Schuylerville and hearing about postpartum depression disorders from doctors and family members, Nelson began to make sense of what happened.
“Everything started clicking, but I think the bulk of my education came after the birth of my second,” she said.
After giving birth to Adler four years ago, Nelson experienced another four months of postpartum, although less severe because of her established support system.
Still, the lack of resources in the Capital Region for women with postpartum mood disorders was glaring, she thought.
“Even the doctors don’t know where to send these women,” Nelson said.
She connected with Breese, who has worked for almost eight years as a postpartum doula, someone trained to provide in-house support to women and their families after childbirth.
“I was a survivor of extreme postpartum anxiety. It’s always been a cause near and dear to my heart,” Breese said.
In May, Breese started a monthly postpartum support group in Troy. Now the group is a part of Shades of Light and has a consistent following.
“I was ready to create some support in the community so these women wouldn’t have to go it alone like I did,” Breese said.
Nelson connected with Sonia Murdock, co-founder and executive director of the Long Island-based Postpartum Resource Center of New York, who quickly got on board with Shades of Light.
In June, Nelson went through training with Murdock to earn the same certifications Breese has to conduct postpartum support groups.
Last month, Nelson hosted the first Saratoga Springs group at the public library, and the women have a Glens Falls group in the works.
In New York state, around 25,000 women suffer from perinatal disorders and more than 50,000 suffer from postpartum mood disorders, Murdock said.
The spectrum of these diseases and their risk factors are wide. While not genetic, women who have experienced a trauma are at greater risk to develop the condition, Murdock explained.
With trauma often comes postpartum post-traumatic stress disorder in which birth re-triggers the traumatic experience.
“There are a lot of sub-sets — postpartum psychosis is where the woman is unable to tell the difference between what’s reality and what’s not reality,” Murdock said.
Other postpartum classifications include depression/anxiety, obsessive-compulsive disorder, panic disorder and anxiety or depression during pregnancies.
“The information needs to be integrated into the whole continuum: pre-
conception, during pregnancy and after having a baby for everyone who plays a role. It’s important for them to be educated about how to be part of the safety net,” Murdock said.
That’s exactly what Nelson and Breese hope to bring to the Capital District with Shades of Light.
Future plans include a website with a local guide of professionals and support groups, as well as distributing informational brochures through regional health care facilities.
“We would like to have what they (the Postpartum Resource Center of New York) have here. We want to be independent and have one support group per week. There are all different kinds of outreach we hope to accomplish,” Breese said.
There’s still a way to go, much of which requires funding. But if Shades of Light grows the way she hopes, Nelson, owner of a graphic design business, envisions this becoming a full-time career.
“I’m hoping some businesses will want to help us or donate so we can provide all these things,” Nelson said. “If everybody plays a little part, it could be a really, really big thing.”