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What you need to know about multiple sclerosis (MS)
Are you caring for a child, teenager or adult with multiple sclerosis (MS)?
Multiple sclerosis (MS) disrupts daily life and sometimes redistributes roles within the family unit. Understanding MS, how it works and its symptoms can help you cope and adapt more effectively.
What should I know about multiple sclerosis?
Multiple sclerosis (MS) is an autoimmune disease that affects the nervous system, i.e., the brain, spinal cord and optic nerves. MS attacks myelin, the protective layer surrounding nerve fibres. This leads to scattered lesions known as “plaques.”
Multiple sclerosis is an unpredictable and often disabling condition. Symptoms can include:
- Extreme fatigue and weakness;
- Cognitive, coordination, sensitivity or vision disorders;
- Tingling sensations;
- Constipation, diarrhea, urinary tract disorders;
- Mood swings and depression.
Periods of attack followed by remissions
Gradual and continuous increase in disability
Progressive relapsing-remitting MS
Ongoing disability from the outset, with definite attacks sometimes followed by remissions
MS, a disease of young adulthood
Multiple sclerosis is the leading cause of severe non-traumatic disability among young adults. Approximately 60% of adults recently diagnosed with MS are aged between 20 and 49.
This leads to upheavals in daily life and a possible redistribution of roles within the family unit:
Adolescents adopt the role of young caregivers;
- Parents of young adults with MS become parent caregivers, even though their own parents may have age-related needs;
- When they begin married life, the spouses of these young adults become caregivers, and frequently male caregivers, since MS predominantly affects women.
Personal life is turned upside down, love life is affected, professional life is disrupted, youth is perturbed; the whole family dynamic is affected by the disease. Each person adjusts to the situation, according to their own abilities, living conditions and context. For example, Jean-Benoit Cloutier-Boucher took care of his mother, but has no memory of her without the disease. Comedian Debbie Lynch-White was 14 when her father was diagnosed with multiple sclerosis at the age of 42; she discusses her journey here with Marina Orsini.
In this Caregiver Podcast, Debbie Lynch-White talks about how, from ages 14 to 24, when she had to buy groceries after school or carry her father up the stairs, she didn’t ask for help; for young Debbie, “that period was all a blur.” How are you managing as a caregiver? What kind of care does the person you are caring for receive? What kind of help do you need?
Diagnosis and treatments
Making a diagnosis of multiple sclerosis (MS) can be a long and complex process:
- When a person displays certain symptoms, the doctor refers them to a neurologist, who prescribes an examination and analyzes their medical history;
- The neurologist may use magnetic resonance imaging (MRI);
- Despite the diagnosis, it remains difficult to determine the severity of the disease and predict its course.
There is currently no cure for MS. Treatments exist to reduce the frequency and intensity of relapses and to relieve symptoms. There are three categories: treatment of relapses, disease-modifying therapies and treatment of symptoms.
Patient care has greatly improved, and with it the quality of life for patients and their families.
Questions and possible solutions
My daughter is 22. She’s often angry and exasperated. What can I do about it?
Anger is frequently reported in people with multiple sclerosis. It often comes on top of great fatigue. There are two possible courses of action. On the one hand, you need to understand MS, how it works and its symptoms. On the other hand, open up a dialogue with your daughter on the subject of her anger; the advice of psychologist Caroline Laroche-Prevot can help with this discussion.
We live in a rural area, what kind of care is available? My 17-year-old has just been diagnosed.
In terms of clinical care, there are MS clinics all over the province. There are also numerous associations and organizations throughout the regions to provide support for you and your child. You can also find associations in this Biblio-Santé booklet. You’ll also find novels, documentaries and films to help you talk to your child about this difficult period.
With medication, relapses have become much shorter in recent years. So my wife doesn’t need help all the time. So how can I call myself a caregiver?
MS Canada has raised this issue with its advocacy for access to the Canada Disability Benefit for people dealing with episodic disabilities.
Although it may seem abstract, recognizing yourself as a caregiver can open doors to resources, support, services and referrals. In concrete terms, this could include respite care, home care or assistance with transportation. You can contact our Caregiver Support Helpline to speak to a counselor.
Need to talk?
Contact our Caregiver Support Helpline for counselling, information et referrals.
Every day from 8 a.m. to 8 p.m.
Free of charge.