And because of that, the condition took from her two things in life she loved: her work as a nurse and her music. She was a guitarist, flutist, and vocalist who specialized in liturgical music. Still, “I love life,” says the married mother of two adult children who lives in Rhode Island. “I love my family, and I love the thought of the adventure of life ahead. I feel that now I am physically able to do some of the things my husband and I didn’t do in our forties and fifties. It’s been quite a change.” Binns, now in her mid-sixties, credits her family, her work, and her faith with helping her reverse what she describes as the “deconditioning that comes with having a chronic disease.”
The Long Journey to an MS Diagnosis
Binns’s journey to a multiple sclerosis diagnosis began with symptoms resembling those of optic neuritis in her left eye and periods of left-side weakness. She would experience these symptoms once or twice a year for days or even weeks at a time before she saw an ophthalmologist in 1994 who sent her to a neurologist who confirmed her MS. By then, she had lost much of the sight in her left eye. “I kept being told my symptoms didn’t really make much sense, and much of that time I didn’t have health insurance, and so doctors were hesitant to perform tests we couldn’t afford,” she says. “It was very frustrating, because I knew my body, and I didn’t feel like I was being taken seriously.” Even after learning for sure that RRMS was the cause of her symptoms, Binns and her care team struggled to find a treatment that worked for her. As a result, in 1996, she was forced to stop working as a nurse because her symptoms made working with the patients in her care too difficult. “I had experienced several falls while out in the field, at clients’ houses,” she recalls of her home care case-management position. “A lot of my clients lived in beachside cottages without insulation. It would be 80 degrees outside and 100 degrees inside, and I would literally fall out the door because I was overheated and overtired.” It wasn’t until she was “scooter dependent,” she says, that she finally began a disease-modifying therapy for MS. This came about when she transferred her care from a local neurologist to an MS specialist.
New Treatment, New Lease on Life
After a lot of trial and error, Binns and her doctor were able to find a disease-modifying therapy (DMT) that reduced both the frequency and severity of her relapses. As of this writing, she hasn’t experienced any relapses or new MS symptoms in nearly two years. “Plus, as we get older, relapses become less and less frequent,” notes Binns. “In fact, some people can go off drug therapy as they get older without experiencing relapses.” But Binns isn’t among them. When she and her doctors have experimented with discontinuing treatment, she’s experienced MS relapses. As a result, she remains on a DMT, and the current regimen seems to keep her symptoms under control. When she does have relapses, in addition to the vision problems in her left eye, which are permanent, Binns experiences weakness in her left arm and leg and what she calls “incredible, knuckle-dragging fatigue.” “I may not be able to hold a plate to put it up in the cupboard, because I don’t have strength in my arm,” she explains. “I may not be able to get up a flight of stairs without pulling myself up by the railing.”
Improved Diet and More Exercise Have Helped, Too
In addition to finding the right DMT for her, “I’ve also made major lifestyle adjustments,” Binns says. “I’ve basically eliminated sugars from my diet and transitioned to a whole-food diet. Overall, I’m cooking more and better, and my food selection is closer to farm-to-table. I’ve also ramped up physical activity. We’re hearing more and more that MS is a lifestyle disease. There are so many changes that we can make that can improve things for us, and if we don’t make these changes, it will make our MS worse.”
With Newfound Energy, Taking on New Roles
Since 2014, with her RRMS symptoms under improved control, Binns has been consulting with a number of MS organizations and support groups and traveling across the country to present patient education programs to people with MS and their caregivers. She’s been an MS-certified nurse since 2003, one of roughly 1,200 MS-certified nurses worldwide. “Through my work, I see people so much worse off than I am, but I also see people who aren’t as bad off as I used to be,” she notes. “Because of my own experience, I can honestly say to them, ‘You can do this, because I am living proof, and I’ll be available to help you through it.’” She also serves on a number of advisory committees related to aging (she has a degree in gerontology), living with chronic illness, and incorporating the patient voice into research. This work represents a half-dozen different national organizations.
Helping Others With MS Gives Her Strength
It’s through this work that Binns has found the strength to continue to persevere with her own MS and live a happy and healthy life. As part of that, she shares with her contacts the life lessons that helped her meet the challenge of MS head-on. “Each of us is individually responsible for our own well-being by the actions we take and decisions we make,” Binns says. “And it’s important to focus on what’s possible instead of what’s impossible with MS. My work is something to which I feel I’ve been called and given the tools to do. It’s a natural outgrowth of who I am and what I’ve been through that I can share this journey with others. I cannot in clear conscience let others continue to suffer because there’s not someone there to support them on their journey.”
