cognitive issues in multiple sclerosis (ms) – bringing awareness to light
gaby mammone and neurologist dr. tara lad share their perspectives on this under-addressed ms symptom
5 minute read
gaby mammone, tania haldar photography
this story is sponsored by
novartis pharmaceuticals canada inc.
this story was created by content works, postmedia’s commercial content division, on behalf of a client.
for the more than 90,000 canadians who live with multiple sclerosis (ms), it was likely the physical symptoms that prompted them to see their doctor. ms attacks the myelin – the protective covering in the brain and spinal cord, leading to interruption or distortion of nerve impulses. fatigue, pain, difficulty walking, bladder dysfunction, visual disturbances and a wide variety of other physical manifestations can occur in this chronic autoimmune disease, depending on the parts of the central nervous system where the myelin is damaged. yet, ms is also characterized by cognitive symptoms, especially in its later phase, and experts are now recognizing their importance in helping to identify individuals with the relapsing remitting form of ms (rrms) who may be transitioning to what’s known as secondary progressive ms (spms).
this transition has historically been difficult to define or predict.
rrms, which is characterized by temporary flare-ups called relapses, when new symptoms appear, followed by periods of recovery and remission, is the most commonly diagnosed form of ms. however, most individuals with this diagnosis will eventually progress to spms – a phase of the disease in which there is progressive worsening with fewer relapses and minor remissions.
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dr. tara lad, supplied
cognitive symptoms can often be subtle — noticed first by the person with ms, a family member or a colleague. some of the signs may include difficulty with:
- finding the right words
- work performance
- remembering daily routines at home or work
- making decisions or problem solving
- keeping up with tasks or conversations.
“there can be an emotional aspect to cognition. some patients may not want to acknowledge they are having memory issues, or they may be unaware that ms can affect cognition — or they may attribute these challenges to other life factors—so they don’t think to mention it to their neurologist during their regular clinic visits,” says dr. lad, pointing out that historically, cognition hasn’t been fully appreciated as a manifestation of ms.
yet, cognitive changes associated with ms can significantly affect a person’s quality of life, relationships, activities and employment.
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“there has been more focus on the physical exam and the mri result. but the physical exam may not give the early signals of the change to the secondary progressive phase,” says dr. lad.
it’s a conversation dr. lad believes is important for people with ms to have with their physician during regular in-person assessments and for them to track both their physical and cognitive symptoms to help inform their discussions. and for physicians, it’s important to ask the right questions to assess cognition issues, says dr. lad.
gaby mammone, who has been living with rrms for 18 years believes that being open about the symptoms she experiences has played a large role in her ability to manage her disease. being proactive comes naturally to mammone, who has continued to live a full and rewarding life that includes being a mother of two, running a company, and being an ambassador for the ms society of canada. mammone also does a lot of professional speaking engagements that focus on topics she is uniquely qualified to address – kindness, resilience and overcoming adversity.
since the pandemic, mammone began noticing memory issues, such as difficulty remembering words or how certain words are spelled. true to form, she took a proactive approach and has been monitoring and recording her symptoms. “there are some really great digital tools and websites designed specifically for tracking ms symptoms,” says mammone, noting a site that she contributed to, called myrules.ca, that allows people living with ms to organize and track their symptoms over time.
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mammone has also started to use workarounds to adapt to these new challenges, like using pictures in her mind to help memorize speeches, detailed calendars for home and work life, and recording meetings so she can play back key points. but she does plan to discuss the cognitive symptoms at her next visit with her neurologist to help learn if it is, indeed, a sign her disease is progressing.
unfortunately, the pandemic posed challenges for many living with chronic diseases to have in-person clinic visits and diagnostic assessments or have fulsome and collaborative discussions with their care teams. but continuing to track all symptoms to inform and optimize regular face-to-face check-ups remains important
because while the world seemed to ‘stop’ for many living with ms, progression of their disease may not have.
dr. lad believes there is great value in having conversations about the non-physical symptoms of ms. “when we are able to identify cognition issues, it helps direct management approaches – and today we have more options than ever before.
we can also work together to optimize the journey, including facilitating things from both a work perspective and building in that social support network,” says dr. lad. “just because a person has mild memory issues, it doesn’t mean that they can’t have good quality of life, as long as those supports are built in.”
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there is more reason for hope as research continues. this includes investigating the potential use of new biomarkers (clues from the body) to identify progression in ms, which has traditionally relied on clinical evaluation.
a variety of studies are underway – from the use of tracking eye movement to the use of fluid proteins called neurofilament light changes
to new imaging techniques to identify sub-types of brain lesions.
that hope and optimism also define gaby’s perspective on life. “i focus on gratitude – and starting each day with a positive outlook,” she says.
if you or your loved one are living with ms, access the questionnaire at myrules.ca to help you keep track of both physical and cognitive symptoms over time.
this story was created by content works, postmedia’s commercial content division, on behalf of novartis pharmaceuticals canada inc.
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