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Where do I start?
Being diagnosed with MS presents new challenges, not just for those with the disease, but also for their loved ones and caregivers. A person living with MS will need strong support from family, friends, and organizations. By being proactive, those living with MS can take back control, find balance in their everyday lives, and adapt to all the lifestyle changes that will occur.
Check out the latest articles on current MS topics
LIFESTYLE CHANGES
Living with MS is a lifelong journey. People become more aware of their behaviours, nutrition, lifestyle and activities, that can be positive. It is an ongoing process that involves taking action and making good choices in a range of areas.
Everyday tasks
Mobility
Exercise
Energy levels and fatigue
Nutrition
Stress
Depression and anxiety
Bladder and bowel functions
Everyday tasks
Mobility
Exercise
Energy levels and fatigue
Nutrition
Stress
Depression and anxiety
Bladder and bowel functions
The following are practical lifestyle tips for managing everyday tasks, errands, and responsibilities for people living with MS:
mobility
Mobility means different things to different people.
For some, it means being able to go on long walks on the beach, while for others it means being able to run normal errands. No matter what mobility means to you, the ability to get around is important to everyone.
For those living with MS, it is key to recognize what symptoms may affect their mobility and to know that treatment options exist.
For a more in-depth look at MS and mobility
exercise
It has actually been proven that exercise is your friend when you have MS. The benefits extend to both mind and body as it helps you develop a positive attitude and improves your overall ability to function.
Exercise not only helps reduce fatigue, depression, and anger, but it also helps rebuild important connections and create nerve growth factors in the brain and nervous system.
Exercising on a regular basis can also improve:
- Muscle strength
- Heart health
- Bowel and bladder control
There are simple, quick and effective exercises that can be done anytime, anywhere. All you will need is a chair, a bed or sofa and the floor.
For more information about specific exercises you can do
Energy levels and fatigue
People living with MS can learn to renew and refresh along the way.
Being rested improves overall endurance and can provide you with the strength and energy to enjoy your favourite activities. Taking the time to rest during the day is a smart way to pace yourself.
Knowing when and how to conserve energy can help you manage the fatigue that can be so frustrating and debilitating for those living with MS.
nutrition
Maintaining good health in general is very important for people with any chronic disorder and eating a healthy, well-balanced, low-fat, high-fibre diet will help you with that. Although there is no recommended “MS diet” or any evidence to support nutritional therapy in the treatment of MS, what and when you eat certainly affects your overall health.
For example, a good diet improves:
- Energy levels
- Bladder and bowel control
And decreases the risk of:
- Heart disease
- Certain types of cancer
- Obesity
Below are a few tips to help you with the planning and research required to achieve your nutritional goals.
Your daily checklist
According to Canada’s food guide, Canadians should make it a habit to eat a variety of healthy foods every day.
- Eat plenty of vegetables and fruits, whole grain foods and protein foods.
- Try to choose protein foods that come from plants
- Choose foods with healthy fats instead of saturated fat
- Limit highly processed foods. Eat them less often and only in small amounts.
- Prepare meals and snacks using ingredients with limited added sodium, sugars or saturated fat
- Choose healthier menu options when eating out
- Make water your drink of choice
- Replace sugary drinks with water
- Use food labels
- Be aware that food marketing can influence your choices
Maintaining health with good nutrition
- Vitamins and minerals → play a vital role in the body’s chemistry, help nerves and muscles function properly and give strength to bones and teeth.
- Carbohydrates → are an essential source of energy and assist muscles in using fat for energy.
- Proteins → help growth and tissue maintenance and repair.
- Fats → help the body absorb important nutrients, help insulate the body against heat and cold, and protect vital organs.
- Fibre → makes stool softer and, therefore, easier and faster to eliminate.
- Water → water is essential for the body: it carries nutrients, removes cell waste and regulates body temperature.
Remember, proper nutrition is important for everyone – perhaps even more so for those living with a chronic illness such as MS.
stress
It’s not always easy to “just relax,” especially when living with MS. To really give yourself a mental break, try to identify what is causing you stress and find ways to avoid or lessen its effect.
Depression & anxiety
Depression is one of the most challenging symptoms of the disease for people living with MS, as well as their families. It is good to know how to recognize, understand and manage the mood changes that so often accompany depression.
People living with MS consistently say that learning how to deal with these mood changes, along with a healthy diet and regular exercise, is very important to achieving personal wellness.
However, MS patients who suffer from more severe mood changes may not be able to implement other self-care strategies, such as MS management, emotional wellness strategies, regular exercise, or a healthy diet.
Efficient depression management is necessary to help you feel better and improve your quality of life, as well as to make it possible for you to practice self-care and implement lifestyle changes to improve your overall health and well-being. Talk to your doctor about finding ways to manage depression.
For more information on the emotional symptoms of MS
Mobility
In MS, nerve cells get damaged. This slowed or sometimes altered nerve performance can result in muscle weakness and stiffness (spasticity), pain, fatigue, unsteadiness and dizziness, and shaking and loss of coordination, all of which can affect a person’s ability to move around and be active.
Keeping track of changes
It is important to recognize and acknowledge changes in your physical condition. The progressive nature of MS can include relapses (a sudden onset of new symptoms or worsening of old symptoms) and remissions (symptoms that return to their previous level or stabilize). Keeping track of changes in mobility can provide your health care team with information to compare over time.
A pedometer is a device that counts the steps a person takes. Consider using a pedometer to keep track of how long it takes to take a set number of steps. This can help measure mobility changes over time.
Keeping a record of results in a journal or with the use of a smartphone app can be useful.
Mobility aids and medical treatments
There are many approaches that can be taken to help manage mobility issues including:
When looking for a mobility device, consider your needs, lifestyle, and budget.
Mobility aids can help you get where you need to go while helping you conserve energy and avoid falling.
Discuss your mobility issues with your doctor and ask about a medical treatment that can help manage them.
Symptoms that can affect mobility
One or a combination of several MS symptoms can influence mobility. These are discussed below.
Fatigue
- Fatigue is an overwhelming sense of physical or mental tiredness and is the most common symptom of MS.
- It may be caused by a combination of damage to the CNS, MS medications, and certain MS symptoms.
- Fatigue may cause other MS symptoms to get worse temporarily or cause symptoms you had during previous relapses to come back.
- It occurs whether or not you have MS, like following overexertion or a lack of sleep.
Changes in vision and vision problems
- Damage to the nerve pathways that control eye movement may cause a lack of coordination between the two eyes, resulting in double vision (diplopia) or twitching eye movements (nystagmus).
- Inflammation of the optic nerve (optic neuritis) is the most common visual disorder in MS, which can affect one or both eyes and can cause pain with eye movement, colour disturbances, blurred vision or blind spots.
- The symptoms of optic neuritis may be worse at the beginning of an occurrence but then gradually improve. Some people recover within a month and others within a year. Most people regain normal or nearly normal sight.
Muscle stiffness and spasms (spasticity)
- Spasticity means involuntary muscle stiffness and spasms, or sudden muscle contractions.
- Spasticity is believed to be caused by increased sensitivity in the areas of the muscles responsible for tightening, relaxing and stretching. This may be caused by demyelination (damage to the protective cover – the myelin sheath – that surrounds nerve fibres) of the nerves connected to the affected muscles, which in turn leads to excessive firing.
- In more severe cases, the spasms are painful and may cause twisted arms and legs, which can affect mobility and other physical functions.
Muscle weakness
- Muscle weakness is caused by the poor transmission of messages along damaged nerve pathways within the brain and spinal cord.
- Muscle weakness in the arms and legs may cause people to experience difficulty walking.
- Muscle weakness is often associated with fatigue.
- While exercising is good, excessive exercising may cause fatigue and actually worsen muscle weakness.
Decreased balance and dizziness
- Damage to the complex nerve pathways in the brain that coordinate vision and other inputs needed to maintain balance can cause dizziness or problems with balance.
- Other MS symptoms such as muscle spasms, stiffness and weakness along with a lack of endurance and coordination, may also influence balance and therefore impair walking, which is a major problem in MS.
Changes in sensation and pain
- Damage to nerves can cause abnormal sensations such as numbness, burning, aching, tingling, and electric shock or pins and-needles sensations. People with MS also often complain of pain, which may sometimes be difficult to differentiate from non-MS pain.
- Other MS symptoms such as muscle weakness, spasticity (muscle stiffness and spasms) and difficulty balancing may affect posture, which in turn could also cause low back and joint pain.
Tremors
- Tremors are uncontrollable shaking or trembling to-and-fro movements of the extremities and sometimes of the head and neck.
- The most common tremor in MS is caused by damage to an area of the brain called the cerebellum, which is responsible for balance and for coordinating muscle movement.
- Not every tremor is related to MS. An example of a non-MS tremor would be the shaking or trembling you might notice when their arms are outstretched.
Rehabilitation, occupational therapy, and physiotherapy
Rehabilitation specialists can help to identify the tools and strategies that best meet mobility and accessibility needs, keeping people living with MS active, productive, and involved. If symptoms begin to interfere with everyday activities, a rehabilitation team can address problems with mobility, dressing and personal care, role performance at home and work, and overall fitness.
The rehabilitation plan for a person with MS depends on the nature of that individual’s disability or disabilities but is likely to involve:
- Physiotherapy (stretching, strengthening, and retraining muscles to improve function)
- Therapy for speech and swallowing difficulties
- Occupational therapy (to enhance independence and safety in all activities related to personal care, employment, and leisure activities)
Rehabilitation will often focus on two main areas:
1. Improving all levels of function that may have been changed or lost
2. Maintaining the best possible function as the disease progresses
Monitoring symptoms and relapses
People with MS develop varying degrees of visual, cognitive, physical, and psychological disability, depending on which area of the CNS is affected. It is very important to monitor and record symptoms as your condition progresses. Most importantly, identifying when relapses occur and making note of them is helpful information to tell your doctor.
relapses
A relapse is a relatively sudden episode of MS symptoms lasting more than 24 hours, occurring at least 30 days after the onset of a prior relapse, in the absence of fever or infection.
An MS relapse (also referred to as an attack, exacerbation, or flare-up) occurs when new symptoms appear or existing symptoms suddenly get worse in a person who has been diagnosed with MS.
The symptoms of MS relapses differ from person to person, often vary in frequency and severity, and can change and fluctuate over time.
Symptoms may come and go, and people may feel better but later experience episodes of worsening symptoms.
Relapses can be very mild and have little effect on your ability to function, or they can be severe and interfere with your ability to carry out normal tasks at home and at work. It is important to keep track of when these relapses occur.
Recording how long relapses last and what symptoms you experience can help your MS team learn more about what is happening.
Speaking openly about MS
Talking about MS can be hard, especially soon after diagnosis. However, it is an important step in learning how to live with MS.
It is up to you whether or not to tell people you have been diagnosed with MS. However, your family and close friends may be able to help you get used to your new diagnosis and learn how to live with this change.
It is okay to talk about it.
Certain MS symptoms may be more difficult to talk about, but speaking with a doctor is important as they may not otherwise ask you and many of these symptoms can be managed successfully.
Doctors are trained to deal with both the physical and emotional aspects of living with MS and can help connect you with the resources you may need.
Whatever approach is chosen, the person with MS is the one who makes the decision.
Talking to family and close friends openly and honestly about your MS diagnosis is also important and can help shed light on what they are going through as well. Grief and worry are normal emotions to feel when someone you love has news about their health.
MS affects families, not just individuals.
Sharing MS-related experiences
Though it may be difficult at first, talking openly and honestly about your thoughts and feelings can make it easier to deal with MS.
Organizations such as the Multiple Sclerosis Society of Canada (MSSC) provide services to people with MS and their families and funds research to find the cause and cure for this disease.
Turning to organizations such as these for assistance in overcoming challenges is an important first step, as they aim to connect and empower the MS community.
talking to a doctor
Doctors are partners in managing MS.
Managing MS is a team effort and requires many different healthcare professionals in managing the disease and its symptoms. The goal is to promote comfort, function, independence and wellness. In most cases, the neurologist serves as the team leader, as it is their job to diagnose MS, find treatment strategies, and coordinate treatments with the rest of the team.
People may wish to speak to a doctor or MS nurse about their treatment options if they:
- Are newly diagnosed with MS
- Want more information on treatment options
- Have started a new medication
- Notice the present MS treatment does not seem to be working as well as it used to
- Think they may be having side effects from the MS treatment
- Are having trouble giving themselves injections
- Are having trouble remembering to take their medication
- Are not quite sure how to use their medication
- Find their MS seems to be getting worse
- Are pregnant or breastfeeding
- Are planning a pregnancy
- Have any other concerns or questions about their MS or MS treatment
Doctors will likely ask many questions about your health.
Be prepared to talk about:
- Your symptoms and how they may be affecting your daily life
- Any other medical conditions you may have
- Whether you are taking any other medications
Make a list of changes that occur. Recording symptoms between appointments can be helpful.
Download the Discussion checklist for you and your neurologist PDF
Download a list of questions to help you prepare for your next doctor’s visit
Start by creating a “Questions to ask your doctor” list. Some things to consider include:
- What kind of multiple sclerosis do I have?
- Could anything else be causing my symptoms?
- Will I have new symptoms? Will they get worse over time?
- What can I do at home to manage my symptoms?
- What drugs and other treatments do you recommend for me?
- How will I know if the drugs are working?
- What side effects should I expect, and how should I handle them?
- Can exercise or physical therapy help me feel better?
- Will MS affect my sex life? Can I have children?
- Are there any local support groups?
Some people like to bring a family member or close friend to their visit for support, to help them remember what the doctor said during the visit, and to remind them to ask the questions they had prepared for the visit. If so, arrange it in advance so the person will be available to attend.
For a helpful checklist your appointment, download the Questions to ask medical professionals and discussion checklist PDF.
ms and work
Everybody experiences MS differently.
After being diagnosed with MS, some people may find they can continue to work as before, while others may have to make changes and adjustments.
The following can help you remain employed and stay employed for longer:
- Disease-modifying drugs
- New technologies
- Better symptom management
- Legal employment protections
- Community resources
Career choices are personal ones, and going over options will help identify priorities and lead to rational and informed decisions.
Exploring employment options may involve thinking about some of the following:
- Modify your work schedule (e.g., flexible work hours, working from home, shift change)
- Modifying your workstation (e.g., relocating it closer to the washroom or raising it)
- Modifying your job description
- Training for another position within your organization
For more information, please
Friends and family: An important role
Planning for uncertainty can be very hard for people living with MS. In the face of such challenges, strong, honest communication with partners, family, and friends is key.
Family members are friends will react and cope in their own way. Be realistic about the kind of care you need and what your caregiver can really offer in terms of time. types of care you need and what your caregiver can really offer in terms of time, types of care, and financial support.
Ways to help
Living with MS requires a team effort by the caregiver and the person with MS.
Levels of care will vary for every individual, and as MS changes over time, those living with it will require a wide range of support from caregivers.
Assistance may involve addressing few functional difficulties at first (like helping with injections or being present at appointments) but later demand more daily attention (such as toileting, feeding, dressing, etc.). Emotional care will also play an important role and will demand flexibility and understanding.
Some practical decisions to think about:
Employment
Financial planning
Transportation
Housing considerations
Reaching out to those with the proper expertise can help.
The more you and your caregiver can each learn about MS, the better able you will be to deal with the challenges ahead.
Medical professionals
Healthcare professionals are partners in MS.
An MS healthcare team can include few or many members:
Collectively, they can help explore opportunities and provide guidance. They can also provide ongoing care as the disease progresses, assess risks and benefits, and help make adjustments to treatment along the way.
Medical professionals are an excellent source of information.
They are able to help you learn more about:
- MS in general
- Available treatment options
- How to use treatment safely
- How to manage any side effects that may occur
Check out the latest articles on current MS topics
Download the Living with MS brochure for more information about MS
Download the Family Planning brochure for more information
Download the Discussion checklist for you and your neurologist PDF
Download a list of questions to help you prepare for your next doctor’s visit
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