Samantha Chase, 15, left, is helped by physical therapist Shannon Greff, center, and occupational therapist Rachelle Cummings at Bartlett Regional Hospital on Wednesday, Feb. 1, 2017. Chase has transverse myelitis, which is an inflammation of the spinal cord that damages the nerve fibers, making her paralyzed. Fundraising is going on in Gustavus and Juneau for an FES300 Cycle which is designed to help physically rehabilitate those with neurological disorders like Chase who is trying to regain use of her arms and legs.
Samantha Chase, 15, talks about her illness at Bartlett Regional Hospital on Wednesday, Feb. 1, 2017. Chase has transverse myelitis, which is an inflammation of the spinal cord that damages the nerve fibers, making her paralyzed. Fundraising is going on in Gustavus and Juneau for an FES300 Cycle which is designed to help physically rehabilitate those with neurological disorders like Chase who is trying to regain use of her arms and legs.
Samantha Chase, 15, poses for a picture with her parents Maryanne and Bob Chase at Bartlett Regional Hospital on Wednesday, Feb. 1, 2017. Chase has transverse myelitis, which is an inflammation of the spinal cord that damages the nerve fibers, making her paralyzed. Fundraising is going on in Gustavus and Juneau for an FES300 Cycle which is designed to help physically rehabilitate those with neurological disorders like Chase who is trying to regain use of her arms and legs.
Story last updated at 2/14/2017 - 8:22 pm
One morning last summer, 15-year-old Samantha Chase of Gustavus came home from a sleepover with a backache — and in less than 24 hours, she was paralyzed. She’d developed a rare neurological condition called transverse myelitis (TM), a viral inflammation of the spinal cord that damages its nerve fibers.
At one of her appointments at Bartlett Regional Hospital’s physical therapy wing, Samantha, with her parents Bob and Maryanne Chase, spoke about how she became paralyzed, her slow recovery, and the fundraising for an RT 300 FES Cycle designed to help those with neurological disorders regain use of their limbs.
The day her life changed
In June of 2016, after Samantha returned from the sleepover with an aching back. She figured she’d slept on it wrong and went on about her day. But the pain was persistent, and later her arms became “heavy and crampy,” she said, “kind of like when your arms are falling asleep.”
Later her shoulders felt like they were burning. She had her father massage them but as soon as he touched her she felt pain. Her father took her to her aunt and uncle’s house because her uncle is an EMT. He gave her an Aleve and an ice pack, thinking the pain was a pulled muscle.
It didn’t help.
She felt “dizzy and loopy,” she said. Both her legs just felt “really hot” and then began “to feel like Jell-O,” so much so that she thought the heater next to her legs was turned on (it wasn’t.) Soon, she could barely move her legs. Both her legs and her arms began to lose feeling.
When she was brought outside for fresh air, she vomited. Her sister had to hold her up because her body just gave out – legs, arms and neck, she said.
“I remember my sister trying to slap my face to keep my eyes open ‘cause they wanted to keep shutting. My dad kept trying to give me water but it was getting harder for me to breathe,” she said.
She managed tell someone to call 911 and ask for an oxygen mask. A family friend diverted his plane from its planned flight and flew her to Juneau.
She doesn’t remember much at that point. She arrived in Juneau, and Bartlett staff ran tests. The last thing she remembers are the worried looks of her family. She was soon sent to Seattle.
She spent a month in the ICU at Seattle Children’s Hospital. Her memories of the time are intermittent.
“I remember communicating ‘squint for yes, blink for no’ or something like that,” Chase said.
Blinking was her only method of communicating while in the ICU because she was paralyzed from the nose down.
She was quickly diagnosed with transverse myelitis upon her arrival to the hospital. Hospital staff treated her with a 14-day course of the new experimental drug Vapendavir, which eliminated the virus, but she was still left with the damage it had caused to her nerves.
Hope in a cycle
She spent the next two months in rehabilitation. So far, Samantha has made a partial recovery, though she hopes for more. In Seattle she regained the ability to move her face and head, and was able to make some small movements in her arms and legs.
It was while she was in rehabilitation that she got introduced to the FES 300 Cycle.
Some models exercise arms, some legs, and some do both. The cycle looks like a stationary exercise bike with pedals and a monitor display, but it hooks up to a person through adhesive pads placed over their muscles. The cycle sends pulses of electrical currents to stimulate the lower motor nerves (peripheral nerves) that connect the muscles to the spinal cord. This generates muscle contractions and patterned muscle activity, helping a person move.
Getting on that bike was a big deal for Samantha. She finally got to feel normal again, moving on her own volition, pedaling a bike like she would back home.
“It was a lot of fun considering I got to use my legs more,” she said.
She only got to use it a maximum of an hour and half during each of her four to five sessions she had with it, but each time she pushed herself more.
The second or third time she rode, she hit 3.2 miles, Bob Chase said, and by the last use she hit four miles.
“I just wanted to keep beating my score,” Samantha said. “I just kept pushing myself harder and harder.”
Samantha went to Thunder Mountain High School for the semester preceding her diagnosis of transverse myelitis, so when she returned to Juneau, where she and her parents moved to have access to Bartlett Regional Hospital and its medical care, she was familiar with the city.
At Bartlett she progressed with her physical therapy. Now, she’s lifting arm weights from one-three pounds to strengthen them, though she needs help gripping them. She also uses a manual arm cycle, but needs help gripping the pedals. She has recently begun practicing drawing, painting and applying makeup, activities she liked to do before that day last summer. She can bend and straighten her legs slightly during her therapy sessions. One of her favorite exercises is the tilt table – it’s where she’s strapped in and the table is tilted forward so she is in a standing position.
“I really like the tilt table cause I get to feel like what it was to stand again,” she said.
But she doesn’t get the freedom of movement or progress that riding the bike would give her. BRH doesn’t have a bike, though it’s been on the physical therapy department’s wish list for some time.
Getting a bike for Bartlett
An FES300 Cycle isn’t cheap. The model that would most help Samantha, which exercises both the arms and legs, costs around $40,000. Right now, they’re aiming for the model that targets the legs at $23,235.
Community members around Gustavus have been fundraising and donating to help Samantha and her family. Mayor Tim Sunday paid for the family’s hotel expenses during their months in Seattle and has helped in several other ways as well. High schoolers raised money with a bake sale, Pep’s Packing owner Pep Scott has helped raise money, and there are jars at businesses around town to help raise money. Sunday matched every dollar raised by community members for the Gustavus School during the annual Fourth of July auction (about $14,000) and gave that to the Chase family.
Now Gustavus community members Melanie and Kim Heacox have been leading the charge in fundraising for the bike; as Melanie called it, it’s “a deliberate act of kindness.” The couple has been busy drumming up interest in Juneau from their home in Gustavus, contacting different businesses who may want to make a donation or support groups of patients with neurological disorders who may also benefit from the bike. In the meantime, Gustavus resident Greg Streveler has taken charge of fundraising in town through direct, personal emails and knocking on doors, the Heacoxes said. Greg and his wife Judy Brekel will match up to $1,000 for the bike. Sunday said he will match the first $5,000 raised for the bike. The Heacoxes are asking for the rest of Southeast Alaska to contribute if they’re able.
Director of Rehabilitation Services at BRH Helen Addington says the equipment could help not just Samantha, but also those with conditions like Parkinson’s Disease or other neurological disorders.
“The benefits are immense, including maintaining or increasing range of motion, increasing local blood circulation, preventing or retarding disuse atrophy and skin breakdown, relaxing muscle spasms,” she wrote in a letter to the hospital. “Disease and injury can dramatically reduce activity levels in both children and adults. When major muscle groups and the heart are not worked, the result is significant impairment of general physical and mental health.”
The Bartlett Regional Hospital Foundation can’t fundraise for one particular person, but can help raise money for equipment for the hospital that will help more than one person, said executive director Maria Uchytil. BRHF will collect donations for the bike. As of Wednesday, Feb. 8, they’d raised $3,469.
Life with TM
Outside of physical therapy, Samantha spends her time taking her online classes through Thunder Mountain High School. She’s able to use her pointer finger on her right hand to scroll and click on the pad of her laptop; since most of her coursework involves multiple choice, she is able to manage it (she can’t yet type). When she isn’t doing schoolwork, she reads books like she’s binging on Netflix, especially books by Sarah Dessen and Cassandra Clare (though she watches quite a bit of Netflix too).
But she wants to go back to school and be with her friends, create her artwork and be able to do the daily physical activities many others don’t even think about, like walking, bathing, or something as simple as brushing her bangs out of her eyes.
“I’m aiming for how it used to be,” Samantha said on her recovery. “I really want to travel — to Africa and India and Thailand — and I want to dance at my senior prom because, I mean, it’s prom and I loved dancing before just for fun. I always wanted to be on the volleyball team here.”
To donate for the RT300 FES bike, go to: brhfoundation.org/donate/donations (donations should be earmarked specifically for the bike). Checks should all indicate the donation is for the bike and can be mailed to
Bartlett Foundation (Attn: Maria Uchytil)
3260 Hospital Drive
Juneau, AK 99801.
For more information, contact Uchytil at email@example.com and (907) 463-5704.