Multiple sclerosis (MS) is a complex disease that calls for a comprehensive care plan involving a team of health-care professionals and other experts in areas such as fitness and nutrition.
Individuals with MS also benefit when they have a broader network of support that goes beyond medicine and lifestyle management – family members and friends, as well as peers and larger communities of people with the disease.
Depending on the individual’s type of MS and how they are affected at various times, specialists may provide therapies aimed at modifying the disease course and to treat exacerbations (also known as “relapses” or “attacks”); rehabilitation programs to help manage symptoms, improve function and ensure safety; and services to address emotional health.
“To me, having a team is vital,” says Ardra Shephard, who has had MS for several years. “In addition to my health-care team, I have built a larger team around me made up of people who ‘get it’ – who understand my challenges and needs in various areas.”
Shephard says she has made it a priority to “do whatever I can to maximize my nutrition and wellness.” She gets guidance from a nutrition expert and works with a physiotherapist to build strength and enhance her mobility.
Research shows that a healthy lifestyle and various non-medicinal strategies improve quality of life for people with MS, and according to the MS Society of Canada, “… maintaining a healthy body weight, not smoking, and checking vitamin D levels may be proactive steps in slowing or preventing MS relapses and progression.”
For Shephard, focusing on her wellness also gives her emotional strength. “I feel like I am doing something every day that is contributing to my health. With a disease that often leads you to feel like you have no control, there is something psychologically uplifting about putting your body first.”
While she appreciates all members of her support team, Shep-hard highlights the value she has received from her physiatrist – a physician specializing in physical medicine and rehabilitation.
When someone is newly diagnosed, their needs might be more emotional. They need someone to help them answer questions like ‘What does the future hold?’ ...— Dr. Anthony Traboulsee, Research Chair for the MS Society of Canada at UBC
“My physiatrist, Dr. Sharon Grad, is one of the most important people on my team,” she says. “Where a neurologist will diagnose and figure out how to treat your MS, a physiatrist’s job is to help you figure out how to live with it. I would urge anyone with MS to get on a waiting list for physiatry; they’ve got all the life hacks that are invaluable for someone with MS.”
Shephard also advises people with MS to seek support from a social worker or similar adviser who can help foster psychological and emotional health.
A supportive and diverse network is crucial, says Marie Heron, who was diagnosed with MS more than 30 years ago. Her team has evolved over time; these days, she is working with an expert in qi gong, an Eastern medicine-based health system similar to tai chi.
“It is helping me with my balance and posture, and improving my gait,” says Heron. The instructor is helping me work to walk heel-to-toe, and it’s amazing how much further and faster I can walk.”
Not to be forgotten are the family members of people with MS, says Heron. The families often find themselves in a caregiver role, which can be stressful. “They are often the unsung heroes, but their role is so vital,” she says. “I make an effort to express my appreciation for all the things, big and small, that my husband and other family members do for me.”
The strongest networks are varied and flexible enough to meet people’s different needs, says Vancouver-based neurologist Anthony Traboulsee, who is Research Chair for the MS Society of Canada at the University of British Columbia.
“When someone is newly diagnosed, their needs might be more emotional,” Dr. Traboulsee says. “They need someone to help them answer questions like ‘What does the future hold?’ and ‘How do I tell my family and friends that I have MS?’
“Somebody who has had MS for 20 or 30 years has perhaps learned how to emotionally deal with chronic illness but needs new types of infrastructure support. Having a network with multiple options – a menu of services and supports tailored to the individual – is the ideal scenario.“
Produced by Randall Anthony Communications. The Globe’s Editorial Department was not involved in its creation