When Lane Malone first started working with Patty Bobryk, a neurologic physical therapist at UCHealth SportsMed Clinic in Steamboat Springs, her initial goal was to walk down the street without issue.
Now, the 55-year-old living with multiple sclerosis (MS) has set her sights a bit higher.
“I want to alpine ski this season with confidence and strength,” said Malone. “And I want to be able to continue sharing great days on the mountain with my husband and son.”
When chronic symptoms are followed by a new diagnosis of MS
In 2007, Malone began experiencing chronic gastroenterology issues that caused significant discomfort and weight loss over the course of 12-18 months. Working with Dr. Mark McCaulley and another provider, Malone was scheduled for a hida scan at UCHealth Yampa Valley Medical Center to see how well Malone’s gallbladder was working; unfortunately, it wasn’t working well at all. In December 2008, it was removed laparoscopically by Dr. Allen Belshaw.
Just a few weeks later, in January 2009, Malone began experiencing numbness on the palms of her hands and soles of her feet. She initially reached out to a local physical therapist, who thought it was an orthopedic issue. At the therapist’s suggestion, Malone contacted McCaulley, who scheduled an MRI of her neck for the following week, after a business trip to Denver.
“While in Denver, the numbness moved from peripheral areas to my core,” she said. “Just holding on to the steering wheel was challenging on the drive home.”
She contacted McCaulley upon returning to Steamboat. He agreed an MRI was warranted, but switched it to an MRI of the brain, and scheduled it for the following day.
“I didn’t think anything of the switch, but trusted Dr. McCaulley as to which scan I needed,” said Malone.
That night, Malone woke up in the middle of the night and had trouble getting back to sleep. The numbness was worse. Something was wrong.
“Half my face was numb and I had trouble speaking. I couldn’t stand up and walk,” she said. “We were scared that it was a stroke. My husband called an ambulance and I ended up staying in the hospital for three days. I had many blood tests, multiple scans and a spinal tap to investigate the cause of the numbness.”
A MS diagnosis 25 years in the making
Within 48 hours, it was a nearly conclusive diagnosis of multiple sclerosis.
“It took six months for my brother, Blake, to be diagnosed in 2003 at the age of 44. My diagnosis came at the same age, but only took a few days,” said Malone. “The first symptom of MS was as early as 1994, but I didn’t recognize it as such until after I was diagnosed.”
Malone vividly remembers running on the prairie near Laramie during grad school at the University of Wyoming in the mid-1990s and lacking the ability to thermo-regulate. In addition to overheating, she noticed that after a run, when she bent her head to untie her shoes, she routinely experienced a buzzing sensation in her legs, but she never really thought much about it because it went away as soon as she cooled down. These sensations were Lhermitte’s signs caused by MS.
Newly diagnosed in 2009, it took time for Malone to regain her footing – literally and figuratively.
“I was weak and scared and extremely uncertain about my future,” she said. “At that point, I didn’t know what my life would look like moving forward. My husband, Mike, our son, Sal, and I, we’re an active family, and I was fearful that might change.”
Malone then did two things, on the advice of her brother. First, she called their parents to share the diagnosis. Second, she called the National MS Society and was connected with an MS navigator who became a resource for information.
“I spent six weeks recovering physically and emotionally, pouring over all the resources on the society’s website and learning a lot,” said Malone.
Back in the (bike) saddle
A few months after diagnosis, a friend suggested Malone get involved with Bike MS, the National MS Society’s fundraising cycling event with rides varying from 15-150 miles over the course of one to several days. But with an MS diagnosis, she questioned the reality of completing the ride.
“The event seemed really daunting,” Malone said. “Should I do this? Can I do this? How can I do this? I questioned everything.”
Her brother and neurologist reassured her that Bike MS is a ride, not a race and they encouraged her to participate. Malone considers training for and participating in Bike MS a true breakthrough experience and is very grateful for the support she received from family and friends.
“There were tears and sweat and a smile on my face and it was amazing,” said Malone. “I rode 150 miles from Westminster to Fort Collins and back over two days in 95-degree heat. I had a wonderful pacing partner and we took our necessary rest stops. When we approached the finish line, my husband, Mike, put our three-and-a-half-year-old son, Sal, on his little bike and we all crossed the finish line together, with Mike running along behind us.”
Malone was stunned she was able to do the entire ride, and was left wondering: Would she be able to do the ride in ten years when Sal was old enough to do the whole ride with her? Would she even be able to walk? Statistics at the time stated that the disease course for the majority of people with MS progresses to significant disability within 10 years of diagnosis.
“It felt like the clock was ticking,” she said. “I’m not a fan of being a statistic, so I continued circling the wagons to find out who could be on my health care team and help me navigate this new reality.”
Fast-forward 10 years, and Malone, Sal and other family members crossed the 2018 Bike MS ride finish line together in victorious celebration. It was Malone’s 10th annual Bike MS ride.
“I feel free and hopeful on my bike, that there’s a whole world before me while some things are behind me. You flow through the stages,” said Malone. “Life with MS is all about momentum – a body in motion stays in motion unless acted upon by an outside force. I focus on forces I can control, like having hope and faith and doing everything I can to nurture my body, mind, and spirit.”
Malone takes a daily regimen of medication to help with the ongoing impact of spasticity, which causes muscle stiffness and involuntary muscle spasms.
“Spasticity is when your muscles act like a cranky 2-year-old. They do things when you don’t ask them to and then don’t cooperate when you want them to. It’s very frustrating,” she said. “If I don’t take the medication every 6-8 hours, I can really feel it.”
She’s extra careful about hydration and electrolytes, too, to help minimize muscle spasms and cramps.
Malone also receives infusion therapy every six months at UCHealth Jan Bishop Cancer Center.
“It’s a world-class center and I’m so thankful it’s here,” she said. “I’ve had ongoing tests and visits at YVMC that have supported my care over the years. Since becoming part of UCHealth, the additional resources and access have been so appreciated. It’s extraordinary to have such a great hospital and excellent health care right here in our small town.”
Neurologic rehabilitation instead of more medication
In the fall of 2019, Malone felt that some of her ongoing symptoms were gradually worsening. She was committed to pursuing physical therapy and rehabilitation instead of more pharmaceuticals.
“I googled ‘physical therapist Steamboat’ and read every profile in town and found neurological rehab called out at UCHealth SportsMed Clinic,” she said. “I called and explained that I was living with MS and looking for that specific therapy. They said it was my lucky day, as a new neurologic physical therapist (Bobryk) started that very day and specialized in working with patients with MS.”
At their first appointment, Bobryk completed a full assessment of Malone’s health history and evaluated her balance and the strength of each side of her body.
“The drive to be active and engaged physically was apparent with Lane on that first visit,” said Bobryk. “MS presents itself in a very unique way in every individual, so it is important to remember that no two people living with MS are the same.”
After sharing that she was dealing more frequently with spasticity, foot drop and gait issues, Bobryk approached Malone about the possibility of wearing an AFO – an ankle-foot orthosis.
“I was 100% open to it if she thought it would help,” said Malone. “When I was younger, I was an avid trail runner. I felt as if that wasn’t in the realm of possibility in the last 5-10 years. I think with the brace, though, it’s possible. The AFO has already helped improve my gait dramatically so I’m comfortable walking farther and faster.”
Bobryk also identified another opportunity of support for Malone with swallow therapy. Elisabeth Boersma, a speech-language pathologist at SportsMed, was able to teach Malone techniques and diet modifications to keep her safe while eating.
“Patty noticed that I had been clearing my throat a lot. Through a simple test, Elisabeth was able to identify that I have a delayed swallow trigger,” said Malone. “Knowing that I need to sequence what I eat and slowly take small bites, among other things, has been so beneficial. They helped me identify this issue early and learn to address it before it might have become a serious complication of living with MS.”
Gratitude – Every. Single. Day.
While each day can bring different changes, Malone keeps a positive perspective.
“If I’m struggling one day, it doesn’t mean that whatever isn’t working won’t work tomorrow or the next day,” she said. “And if it’s going well today, I savor it, because there are no guarantees it won’t get harder later on.”
Malone says there’s a certain amount of “three steps forward, two steps back” with MS.
“MS is a highly variable condition. Many people underestimate or overestimate MS based on what they may have seen in other people they know with MS,” she said. “If you believe some of the statistics out there, you’d think I’d be in a wheelchair right now.”
Instead, Malone continues to live an active life, thanks to the support of her husband and son as well as the community in which she lives.
“Mike and Sal are a huge inspiration for me every day. We still ski together, though Sal could out-ski both of us by the time he was 10. Sometimes, when I struggle on a challenging slope, I tell Sal, ‘Don’t forget, Mom used to be a ripper on the mountain.’ He’s a good sport and waits for me now,” she said, referencing her years as a professional ski patroller in Colorado and the competitive alpine racing she did growing up in Minnesota.
Since initially reaching out to the National MS Society as a patient, Malone has connected further with the organization as an employee. She currently works as a business analyst for the Individual Giving Team.
“There has been tremendous progress in MS research, services and advocacy in the last 10 years,” Malone said. “I have great hope for the future – that we can create a world free of MS.”
Malone continues to work with Bobryk. They’re now focusing on incorporating components of skiing into her therapy plan, including more complex balance exercises and dynamic movements.
“There is far more potential through rehabilitation in MS than I had previously imagined,” she said.
“There’s a spectacular ski area in my back yard,” said Malone, “and I want to be able to enjoy it with confidence, strength and balance as long as I can.”