Multiple Sclerosis: Understanding Its Impact On The Lives Of Patients And Caregivers
Patient Perspective It’s no secret that multiple sclerosis (MS) can be a devastating disease for the estimated 100,000 Canadians living with it — not to mention for their families and friends who must offer much-needed support.
Imagine losing the ability to do the everyday tasks and chores of daily life — caring for your children, driving to the grocery store, or carrying a basket of laundry upstairs. Multiple Sclerosis becomes front and centre. Life must revolve around managing and coping with it. The good news is that new treatment options are changing that. Patients and their caregivers are being able to reclaim their lives.
A terrifying diagnosis for a young mother
Meet Courtney Lee, a 25-year-old mother of two living in Oshawa, Ontario. She is surrounded by a close family, including two sisters and her fiancé, Joe Nesbitt, 28. Their lives were turned upside down with the news that Lee had multiple sclerosis. What started in 2010 with a pain in her left eye evolved into a saga involving multiple doctors, a litany of tests, and months of uncertainty before she received a firm diagnosis from a neurologist.
Lee remembers that day well. “I was at my appointment with my mother, who is a personal health care worker, and my sister, a nurse. They were hysterical when they heard. Both health care professionals, they knew the rough time ahead of me. We were terrified.”
By the time she and Nesbitt had a second daughter, Lee’s condition had worsened. Numbness in her legs had turned into serious mobility issues, as walking became difficult. Her balance and stability were compromised, and she could no longer take care of her infant daughter.
“I had to watch my daughter’s condition deteriorate,” recalls Lee’s mom, Joanne. “She couldn’t support her own body weight. She couldn’t hold her baby and I could see her body shrinking as she lost muscle mass.”
The family and Lee’s partner responded by creating a schedule of care to ensure she would not be home alone with her newborn. They cooked, cleaned, ran errands, and changed diapers. It was exhausting.
“She’s worth it,” says Nesbitt, who learned of Lee’s condition a year after they started dating. “She told me that she wouldn’t hold it against me, if I wanted to end things because of her MS. But I wasn’t going anywhere.” Recently, the couple bought a two-storey home and are now planning a wedding. And most importantly, Lee is well again.
New and innovative drugs deliver hope
In the early stages of her disease, Lee was being treated with daily injections. “They stopped being effective after I had my daughter,” she says. “I was having episodes and I couldn’t feel my legs. I feared I’d lose my mobility altogether.”
Her doctor recommended a newly available drug infusion taken intravenously for five days in the first year, and three days in the second year, a dosing regimen that is highly unique for multiple sclerosis treatments. The medication has a very unique mode of action, and was designed to slow the progression of the disease, almost like pressing a pause button for the condition.
“I was having episodes and I couldn’t feel my legs. I feared I’d lose my mobility altogether.”
Within a month on the new drug, Lee went from almost being in a wheelchair to running and playing soccer again. “Not in a million years did I expect what the treatment could do for me,” Lee says. Lee’s mom was stunned by the results. “The drug gave her back her life. She can now do everything she could do before her diagnosis. I look at her every day and I smile.”
For Nesbitt, the treatment allowed him to get his fiancée back. “At times, I felt like I had another child,” he says. “Today, she’s the person I first met. There are no words to describe how good it feels.”
Major advancements in MS treatment
“These types of success stories are not unheard of,” says Dr. Anthony Traboulsee, a neurologist, Director of UBC Hospital MS Clinic and MS Society of Canada Research Chair who has been working with multiple sclerosis patients for 15 years. Over that time, he has seen remarkable changes in its treatment. “It’s exciting to see people with a terrible disease doing so well,” he says. “They feel confident, and even go back to work and [are able to] forget about their disease.”
This marks a significant change from where MS treatments were more than a decade ago. “Expectations for treatments back then weren’t high. Patients could get maybe a 30 percent benefit,” Traboulsee explains. “Now, the chances of success are more in the range of 80 to 90 percent.”
This new drug that’s taken in eight days over two years had been studied for over 12 years before recently being made available, and is one of the most effective drugs for relapsing MS. As Dr. Traboulsee explains, “It nips it in the bud. It appears to reset the immune system, shut down new inflammation, and allow more opportunities for repair. After treatment, a patient can be drug-free for maybe a decade. That’s pretty revolutionary.”