Gaby Mammone is worried her multiple sclerosis (MS) may be progressing. She used to play music while she worked, now she needs absolute silence. She has always loved writing, but lately finds herself staring at the words she’s typed, wondering whether or not they’re right. “It’s never happened to me before,” she says.
While the 48-year-old entrepreneur, COO and mother of two was diagnosed with relapsing remitting MS (RRMS) at age 30, she first began experiencing symptoms—tingling in her hands and feet, incontinence, vertigo, peripheral vision loss—in her 20s. She has learned to work around her physical symptoms, but the cognitive symptoms are newer.
Approximately 90,000 Canadians (one in every 400) live with MS, which attacks the protective covering around the brain and spinal cord. Although cognitive changes affect more than half of people living with it, they’re more likely to show up later in RRMS. This is often a sign of progression to a phase of the disease called secondary progressive MS (or SPMS).
This chronic phase is generally characterized by a progressive worsening and fewer relapses, and the gradual accumulation of disability and neurological damage. Sometimes there are occasional relapses and minor remissions and plateaus. Unfortunately, cognitive symptoms do not tend to be routinely discussed or evaluated, even though they can significantly affect a person’s quality of life, relationships, activities and employment.
Part of the problem, according to Dr. Tara Lad, a Hamilton/Burlington-based community neurologist with an interest in MS, is that these symptoms can be subtle, like having trouble multitasking or focusing in meetings. “One patient told me they couldn’t figure out a new electronic system at work, they just couldn’t catch on.” Patients might also have difficulty planning, prioritizing or finding the right words when speaking.
Often, Dr. Lad says, cognitive symptoms are first noticed by friends or family members. “People go to their doctors with a physical complaint and the cognitive piece isn’t addressed because they don’t realize it may be part of their MS,” she says, adding that tracking all symptoms as soon as they arise is key when it comes to management. “Each time we prevent an attack, we stop damage from occurring,” she says. “And the more damage we can prevent early on, the more likely that individuals will have a good quality of life and minimal disability as time goes on.”
Fortunately, there are platforms like MyRules.ca to help make symptom tracking easier with a questionnaire and recurring reminder features. Mammone discovered the importance of tracking her symptoms when she went to see her neurologist and couldn’t remember exactly when her flare-ups had occurred or what all of her symptoms were. “I learned I needed to be more prepared,” she says. “Now, I make note of my symptoms when I have them so that if I do have an attack, I can look back and see what happened right before. I’ve started to see patterns, like an increase in stress before attacks, so now I know to avoid situations that cause me stress.”
To adapt to her cognitive symptoms, Mammone now records meetings so she can review them later and, to memorize speeches she gives as a leader in the advocacy community, she uses pictures in her head. “I’ve needed to adapt because of my cognitive symptoms but I’m not focusing on the decline, I’m focusing on my ability to manage it,” she says. “I won’t let it hold me back from chasing my goals.”
Not everyone with MS progresses the same way, Dr. Lad says, which is why tracking symptoms and building relationships with a care team is so important.
Unfortunately, the pandemic made it challenging for many to build and maintain strong, collaborative partnerships with care teams due to disrupted in-person appointments and diagnostics. But continuing to track well-being and attending screenings and face-to-face check-ups remains important—since MS didn’t necessarily stop for people living with progressive disease.
Both Mammone and Dr. Lad are hopeful for what the future holds for people living with MS. “The outlook is much different than it was 20 years ago,” Dr. Lad says. “We’ve changed our approach to the disease. There is a lot more research on improving quality of life and decreasing disability progression.”
Research is also looking at the use of biomarkers (the body’s biological clues) to better understand MS, progression and treatment response. This includes the use of technology to track eye movement and gaze mapping, investigating certain proteins called neurofilaments in spinal fluid, as well as the use of imaging to determine sub-types of brain lesions.
Mammone is an ambassador for the MS Society of Canada and her favourite moments are when people share how she has helped or inspired them. She says that having a positive mindset has been her saviour throughout her experience, especially now as she navigates the cognitive symptoms of the disease. “Anyone who has some kind of challenge can wake up thinking, ‘It’s going to be a bad day.’ But if you think that, then it will be a bad day,” Mammone says. “I start every day with gratitude. I know my life isn’t necessarily shortened, it’s altered—I just have to make sure it’s altered in the best way possible.”