Local support group launches for people with MS
STEAMBOAT SPRINGS — For many years, the people Gina Zabel worked with as principal of Hayden School District secondary schools had no idea she had multiple sclerosis.
“I prided myself on that; I didn’t want people to know,” she said. “I’m really independent and very stubborn.”
The diagnosis 10 years ago was devastating.
“To have something that I can’t control very well is completely out of character for me,” Zabel said. “It was a long time before I shared with my staff and students. It was really hard for me to say.”
Today, Zabel does talk more openly about her disease.
On Feb. 24, she will have the opportunity to join a new support and self-help group created for people living with MS.
The group will begin virtually due to the pandemic, said the group’s creator, Patty Bobryk, a neurologic physical therapist at the UCHealth SportsMed Clinic in Steamboat.
Zabel and Bobryk have been working together since last June.
Looking back, Zabel said she knew a few years before the official diagnosis that things weren’t right. Like when she ran a 10-kilometer race, and her knees wouldn’t work right at the end. Or when she couldn’t tolerate the summer heat in Arizona — heat she normally loved.
There was a lot of time spent in denial, she said, even as more things started to seem off-kilter.
“I had some really weird things happening, which were not normal,” she described. “When I got really tired, I would slur my words. My gait was off — my balance.”
But it was when Zabel couldn’t sign her name she knew she had to figure out what was going on. A normally perfect signature had turned into something “horrible.”
“I couldn’t control what was happening,” she said.
She went to a therapist and then a doctor who performed an MRI. There were lesions on her brain — resulting in a trip to a specialist and the ultimate diagnosis of MS.
But Zabel, 50, didn’t tell her staff and students until a few years ago when she needed a scooter to start getting around. Walking had become too much. People could see she was struggling, and she needed to explain why.
Opening up has been really hard, she said, but also good for her as it has forced her to really examine how MS affects her and how to explain that.
She tells people she has three enemies: heat, stress and fatigue.
When any of those things increase, she can barely walk.
“I think everybody who has MS has a very different story,” she said.
Zabel doesn’t have any cognitive disabilities, like some with MS, and for that, she feels very thankful.
When she finally did make the announcement in front of the entire school, she received overwhelming support.
“The staff and the teachers in the building, but above all, it was the students,” Zabel said. “I was terrified to let them know. It was the first time I’d ever talked about it openly.”
Zabel is also incredibly grateful for the support of her husband and two daughters and her entire family.
“I couldn’t ask for a better situation with my own family,” she said.
As Zabel began to face increasing physical challenges, her specialist in Denver said she needed to start physical therapy and would have to travel to the Front Range. That’s when Zabel found Bobryk.
It happened by chance. Zabel saw a story in her social media feed about a local woman who had MS and was going to Bobryk for therapy. Zabel knew the woman but didn’t know she had MS. She immediately made an appointment with Bobryk.
“I can’t imagine my life without Patty in it right now,” Zabel said.
She immediately felt comfortable with Bobryk and established trust. And for Zabel, relationships are everything.
“She’s so good at what she does,” Zabel said. “I would do anything for Patty. I’ve made such incredible growth with her and can’t imagine not seeing Patty. She’s been phenomenal.”
Zabel has needed to adapt in recent years, like moving from administration back into the classroom to reduce stress at work.
Her daughter got married last August, and Zabel had two goals — to walk down the aisle and dance.
“Patty knew that, and we worked and worked and worked so I could do those things,” Zabel said.
Before coming to Steamboat about two years ago, Bobryk worked for 25 years at an MS center in Orlando, Florida.
Bobryk learned many ways to support her patients, but it was what they were able to share with her and with each other that ended up being some of the most important contributions, she said. And that’s why she knew Steamboat needed a support group. It was a need she found not being filled throughout the entire Northwest Colorado region, including in the more rural areas.
“I don’t live with the challenges of MS,” she acknowledged.
Bobryk is highly skilled and trained in what she can provide as one of only about 500 MS-certified specialists in the entire country.
“But it’s those common life experiences and offering of mutual support and mutual aid that goes far beyond anything I can bring to the table,” she said.
However, what Bobryk does bring to the table is a lot. She works with MS patients on strength, flexibility, mobility and balance. She comes up with ways to manage symptoms beyond pharmaceuticals and finds ways for people to improve everything about their day-to-day function.
“Anything I can do to promote greater independence or just ease of how to do things,” she said.
Bobryk calls the new group a self-help group, with an emphasis on advocacy, being constructive and positive, and sharing resources and experiences. It is also open to loved ones and caregivers of people with MS.
Zabel said she absolutely plans on being part of the group.
“For a long time, I would have never shared, but I started to realize this is very lonely — struggling with what I’m struggling with.” Zabel said. “I’d like to have that support. I want to be able to hear about someone else and listen to their stories. I would like to think I have a story and info to share with others about ways that I cope with my own difficulties. Maybe I can share with someone else and gain from them too.”
To sign up for the virtual MS self-help group or for more information, contact Bobryk at email@example.com.
To reach Kari Dequine Harden, call 970-871-4205, email kharden@SteamboatPilot.com or follow her on Twitter @kariharden.
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