Being diagnosed with MS presents new and important challenges. Moving forward, a person living with MS will be required to make personal adjustments receive strong support from family, friends and organizations, and the knowledge that being proactive can help shape the future. By being proactive, individuals can take back control, find balance in their everyday lives and adapt to lifestyle changes that will occur.
The following sections provide strategies and insight into:
WHAT THOSE LIVING WITH MS CAN DO
HOW FAMILY AND FRIENDS CAN HELP
Living with MS is a lifelong journey through which people develop an awareness of their behaviours, nutrition, lifestyle and activities that enable them to lead their best lives. It is an ongoing process that involves taking action and making positive choices across a whole range of areas.
- Everyday tasks
- Energy levels and fatigue
- Depression and anxiety
- Bladder and bowel functions
Out and about
- Many pharmacies offer a delivery service that can drop off regular prescriptions at a patient’s home. Doctors and nurses can provide information about how to start using these services.
- Use a mobility aid (if appropriate) to help conserve energy for the type of activities that demand more attention – like choosing a present or shopping for something to wear for a special occasion.
- In advance of going somewhere for the first time, researching the facilities can help to efficiently plan your trip. Consult a map or diagram – are there elevators, steps, escalators or ramps?
- People who can drive might want to consider getting an automatic car. If legs get weak, it may help maintain a sense of independence.
- When considering a trip by plane or train, it is also important to plan ahead. Making sure there is plenty of time to make any connections and that elevators or ramps are available (if need be) can make a real difference.
- Wash one or two loads as they accumulate instead of doing multiple large ones less often.
- Collect clothes in one place (in a laundry basket), and then bring them to the laundry area, in a wheeled cart if possible.
- If the laundry area is in the basement, plan ahead to remain there until the laundry is done, and set aside a place to relax while waiting.
- Sit down while ironing (set the ironing board at a low height if possible).
- Buy clothes that require minimal maintenance.
- Lay out clothing for the next day before going to bed.
- Sit down while dressing whenever possible.
- When dressing, dress the weaker side first, and when undressing, undress the stronger side first.
- Use a long-handled shoe horn to avoid bending.
- Get velcro fastenings or something equally easy to fasten and undo. This could make it easier to get dressed, undressed and go to the toilet.
Bathing and showering
- Organize toiletries together by the bathtub or shower.
- Use grab bars to help get in and out of the bathtub.
- If possible, use a stool when showering or having a bath.
- Use a bathtub mat to avoid slipping and falling.
- Avoid hot water when having a bath as it can increase fatigue.
- If it is difficult to feel the temperature of the water when using a bathtub, get a bathtub thermometer to help identify when it is too hot.
PRACTICAL TIPS FOR EVERYDAY TASKS
The following are a combination of practical lifestyle tips for managing everyday tasks, errands and responsibilities for people challenged with MS:
Mobility means different things to everyone.
For some people, it means being able to go on long runs or hikes, for others it means being able to walk and perform their daily activities just like they always have. No matter what mobility means to different people, the ability to get from A to B is something that is important to all of us.
For those living with MS, it is important 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 CLICK HERE
It has actually been proven that exercise is your friend when you have MS, helping to develop a positive attitude and improving the ability to function.
Exercise not only helps fight fatigue and depression, it helps to rebuild critical connections that generate nerve growth factors in the brain and nervous system. Studies have shown that exercising on a regular basis can also improve muscle strength, heart health, and bowel and bladder functions.
There are 9 simple and effective exercises that can be done in a short time, either at home or away. All that will be needed is a chair, a bed, the floor or a sofa.
- Lying knee bend
- Knee roll
- Pelvic tilt sitting
- Sideways lean
- Single arm raise
- Leg lift
- Stepping balance
CLICK HERE to download a more detailed description of these exercises.
ENERGY LEVELS AND FATIGUE
People living with MS can learn to renew and refresh along the way.
Being rested will greatly improve overall endurance, providing the strength and energy to enjoy daily activities. Taking the time to rest during the day is an intelligent way to pace oneself for the day ahead.
Knowing when and how to conserve energy, for example, can help with managing the fatigue that can be so frustrating and debilitating with MS.
Maintenance of general good health is important for people with any chronic disorder. Although there are no particular diets that have been shown to affect the disease process in MS, food fuels the body and provides energy.
People living with MS should aim to eat a healthy, balanced diet that provides basic vitamins, nutrients and calories to support requirements for energy and fitness. Choosing to eat a low-fat, high-fibre diet will give the body all the nutrients it needs to work to its full potential.
Below are a few tips to help with the planning and research required to achieve nutritional goals.
Your daily checklist
The body needs at least five portions of fruit and vegetables daily.
- Low-fat dairy products are an excellent choice. Try low-fat yogurt and partially-skimmed milk.
- Focus on eating whole grain bread and cereals, brown rice, whole wheat pasta, beans and legumes.
- Make an effort to eat fish like tuna, salmon or mackerel approximately two to three times weekly.
- Beans are a nutritious choice: black bean soup, bean burritos, red beans and rice, and bean dip are examples.
- Avoid artificial sweeteners.
- Drink two litres or more of sugar-free fluids daily.
- The best choices of animal proteins are: chicken, turkey and leaner cuts of red meat.
- Always make an effort to grill, bake, steam or poach food instead of frying.
Healthy eating on the go
- When on the go, or on the road, take care to order food that is grilled not fried.
- Make an effort to avoid processed foods high in saturated fats, such as fried foods and packaged baked goods.
- Opt for fruit instead of french fries, low-fat milk instead of caffeinated beverages or soft drinks.
- Try fruit smoothies or a yogurt parfait or a bagel with cheese.
- Try, whenever possible, to choose foods that are easy to digest and nutritious.
Maintaining health with good nutrition
- Vitamins and minerals→ the body needs them for tissue repair, bone strength and to help absorb other nutrients.
- Carbohydrates and sugars → essential for energy.
- Proteins → help growth and tissue repair.
- Healthy Fats → help the body absorb certain vitamins and provide essential fatty acids.
- Fibre → the body needs it for digestion.
- Fluids → water is essential for the body. It carries nutrients throughout the system and is important in the chemical process in our cells.
Remember, proper nutrition is important for everyone – perhaps even more so for those living with a chronic illness.
It is quite common for people to say “relax,” but sometimes just trying to relax can be stressful, and this is especially true when a person has MS. To really give themselves a mental break, people living with MS need to be able to identify what is stressful in their lives and find ways to avoid it (if possible).
Below are a few techniques to help individuals manage stress and take back control:
Starting mornings right
Less stressful mornings demand some effort.
Learn to think in 24-hour periods, scheduling higher activity demands earlier in the day, as fatigue may settle in as the day progresses. Getting up a few minutes earlier and making preparations the night before (such as setting your clothes out) can help to eliminate aspects of the morning rush. Asking for help from others with some morning jobs may help to comfortably space out tasks. Try not to complicate how you start off your day.
Certain projects can be done at other times of the day when more time is available.
The importance of relaxation
In times of stress, step back and take a deep breath. Then, take the time to destress.
Try a two-minute relaxation break.
If breathing is irregular and hands are clenched, then maybe it is time to go to a quiet room, get comfortable and try to focus on blocking out worries and concerns.
- Start by taking a few deep breaths and exhale slowly.
- Concentrate on what areas feel tense or cramped.
- Take deep breaths and try to loosen up these areas.
- Let go of as much tension possible while taking breaths.
- Rotate the head gently in slow circular movements once or twice.
- Stop immediately if there are feelings of pain.
- With each deep breath, roll shoulders forward and backward several times.
- Allow all muscles to completely relax.
- Think a peaceful thought and focus on that for a few seconds.
Relax and take another deep breath and exhale slowly.
Calming the mind
While this is easier said than done, practicing this technique on a regular basis will help to train the mind to calm down. It is an exercise that may be frustrating or require more practice if there are difficulties with attention and concentration, but in the end can be an enjoyable relaxation exercise for many.
- Choose a time when a 10-minute period is available.
- Find a place that is relatively free of noise and distraction.
- Start with eyes closed and begin to breathe normally, inhaling and exhaling a few times through the nose.
- With eyes still closed, picture a pleasant, restful place.
- Try to visualize as many details as possible: what objects are present, the colour of the sky, who is present, etc.
- Concentrate on that place.
- Silently say the word “one,” or a short word like “peaceful,” or even a phrase like “I feel quiet.”
- Continue repeating it calmly for 10 minutes.
- If the mind wanders, refocus, think about breathing and repeat the chosen word or phrase.
- Allow breathing to become slow and steady.
Breathing as a way to better health
Practicing regular, mindful breathing can be both calming and energizing. Since breathing is something we can control and regulate, it is a useful tool for achieving a relaxed and clear state of mind.
Deep breathing exercises can help to relieve stress, improve focus and develop balance of the mind and the body. Start off by getting comfortable, seated with back straight and shoulders comfortably back. With a soft and forward gaze, let breath flow naturally, using this natural breath as an object of focus during practice.
- Try to become deeply aware of each inhalation and exhalation as it is happening.
- It is natural for the mind to wander away from the focus on breathing.
- When this happens, simply acknowledge the thought and gently return awareness to breathing.
- If sustaining a focus on breathing for an extended period of time proves difficult, do not think of the practice as a “failure.”
Practice is a personal affair, and there are no requirements to achieve full awareness in any set amount of time.
Practical things to help with day-to-day stress
- Simplify the everyday things in life.
- Schedule rest periods in the day.
- Keep updated contacts near the phone.
- Keep everyday supplies well-stocked – such as toilet paper, extra batteries and spare change for buses or meters.
- Use aids and devices that can help save time and effort.
- As heat is often an issue with people with MS, get a fan or air-conditioner.
- Use a microwave instead of the oven if the room is too warm.
- If energy is lacking on a certain day, delay doing something, or say no.
- Get practical: make an extra set of keys, update telephone and address directories.
- Do not feel obligated to attend every event or social function.
- Carry a notebook to write for the day, the week, the month and for others. Do not answer the telephone on the first ring – let it go. If a call is missed, it can always be followed up at a later time.
- If old hobbies are too difficult, find new ones that are
better suited to the current situation.
- Choose to be surrounded by positive people, and avoid spending time with worriers.
- Keep prepared food in the house for times when cooking is not possible.
- Choose to telephone people when visits feel too stressful.
- Try to do something enjoyable every day, so as to look forward to it.
- Do one thing at a time, in order to feel a sense of accomplishment.
- Plan ahead for situations that could cause stress.
BLADDER AND BOWEL FUNCTIONS
Specific bladder dysfunction problems common in MS include incontinence (lack of control), frequency, retention and loss of muscle control or weakness. They can impact energy levels by interfering with sleep patterns, and the uncertainty associated with they can interfere with social activity.
A urologist is a doctor that specializes in problems with the bladder, who may suggest approaches to managing bladder dysfunction such as:
- Dietary and fluid management
- Planning to urinate approximately every three hours while awake
- Treatment with medications
- Wearing an absorbent pad for extra protection
- Doing regular pelvic floor (Kegel) exercises to help control incontinence in women (can also be adapted for use by men)
Specific bowel dysfunction problems common in MS include constipation, incontinence (lack of control), frequency, retention and loss of muscle control or weakness.
For those experiencing constipation or loss of control of bowel movements (which may be caused by nerve damage or aggravated by constipation) suggestions include:
- Establishing a regular time and schedule for bowel movements
- Drinking lots of fluids
- Using stool softeners
- Increasing fiber intake
DEPRESSION & ANXIETY
One of the most challenging symptoms people affected by MS (including those who have the disease and their family members) have identified is depression. They want to know how to recognize, understand and manage the mood changes that are so common with this disease.
Addressing mood changes, along with using diet and exercise to help manage their MS, are the areas that people consistently identify as being high priorities in their efforts to achieve personal wellness while living with this disease.
However, individuals who experience severe mood changes, particularly significant or major depression, may be unable to engage actively or effectively in any self-care strategies, including MS management, emotional wellness strategies, physical exercise or healthy eating practices.
Therefore, effective depression management is necessary not only to help people feel better and improve their quality of life, but also to make it possible for them to embrace self-care and lifestyle changes to enhance their overall health and well-being.
Mobility means different things to everyone.
For some people, it means being able to go on long runs or hikes, for others it means being able to walk and perform their daily activities just like they always have. No matter what mobility means to different people, the ability to get from A to B is something that is important to everyone.
Multiple sclerosis (MS) affects nerve cells, or neurons, that carry messages to and from the brain and the rest of the body. This slowed or sometimes altered nerve performance can result in muscle weakness, spasm, muscle stiffness (spasticity) and sensory changes, which can all affect a person’s ability to move around.
Keeping track of changes
For those living with MS, it is important to recognize and acknowledge changes in their physical condition. The progressive nature of MS can include exacerbations (also called attacks or relapses that cause a sudden onset of new symptoms or worsening of old symptoms) and remissions (in which symptoms return to their previous level or stabilize). Keeping track of changes in mobility is very important. It can provide a healthcare team with information that can be compared over time.
Mobility Side-by-Stride is a free app specifically designed for people with MS and their healthcare professionals to track and compare changes in mobility over time.
It allows for the comparison of walking ability in patients being treated for mobility challenges by recording and comparing video before and after starting therapy.
CLICK HERE for a link to download the app for iPhones and iPads.
MOBILITY AIDS AND MEDICAL TREATMENTS
There are many approaches that can be taken to help manage mobility issues including exercise, physical therapy, mobility aids and medical treatments.
When looking for a mobility device, consider needs, lifestyle and budget.
Mobility aids can help people get where they want to go while conserving energy and preventing falls. For example, using a walking stick in the morning for everyday tasks could help preserve energy to enjoy other activities, accomplish more during the day, and even help to walk unaided later in the day.
SYMPTOMS THAT CAN AFFECT MOBILITY
One or a combination of many symptoms caused by MS can influence mobility. These are discussed below
- Fatigue is often described as an overwhelming sense of tiredness caused by no apparent reason.
- It may be caused by a combination of damage to the central nervous system (CNS), certain MS symptoms like muscle weakness or other factors such as sleep disturbances or a lack of exercise caused by other MS symptoms.
- Fatigue may also cause other symptoms such as difficulties with balance, vision or concentration to get worse temporarily.
- It occurs whether or not MS is present, for example, following exertion 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 or twitching eye movements
- Inflammation of the optic nerve can cause the development of pain, colour disturbances or blurred vision over a few days
- Vision problems may be unrelated to MS. If glasses were worn before the diagnosis, regular visits with an optician are recommended.
Muscle spasms and spasticity (muscle stiffness)
- Damage to nerves in the spinal cord can affect muscle movements when the damage occurs between the brain and the point where the nerve from the muscle joins the spinal cord.
- This can cause muscles to contract tightly and painfully, which is known as a spasm.
- The damage can also cause muscles to stay contracted and become stiff and resistant to movement, which is known as spasticity.
- Muscle weakness is caused by the poor transmission of messages along damaged nerves within the spinal cord.
- Weakness in arms and legs can cause a person to experience difficulty walking or make legs feel heavy.
- Muscle weakness is often associated with fatigue.
- Muscle weakness can also occur after exercise or lifting/carrying heavy objects.
Decreased balance and dizzyness
- 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 symptoms like tremor or muscle spasms may also influence balance, as leg muscles do not respond to signals from the brain as they normally do.
Changes in sensation and pain
- Damage to nerves can cause abnormal sensations like: burning, aching, tingling, “electric shock” type sensations, numbness or pins-and-needles. These may also feel painful
- Other symptoms such as muscle weakness, spasticity (muscle stiffness) and difficulty balancing may affect posture, which could also cause pain.
- Tremor is an uncontrollable shaking or trembling movement that can occur in various parts of the body.
- It is caused by damage to the area of the brain responsible for balance, movement and posture.
- Not every tremor is related to MS. An example would be the shaking or trembling a person might notice after drinking beverages that contain caffeine.
Rehabilitation and physical therapy
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
Treating problems with thinking, concentration and memory
Occupational therapy (to enhance independence and safety in all activities related to personal care, employment and leisure activities
Rehabilitation will often be focused on two main areas:
Monitoring symptoms and relapses
Research shows that MS continues to progress through various stages, in different ways for different people. People with MS develop varying degrees of visual, cognitive, physical and psychological disability. Along the way, it is very important to monitor and record symptoms as the condition changes. Most importantly, identifying when relapses occur and making note of them will be helpful information to bring to the attention of a doctor.
Relapses are generally defined as neurologic symptoms lasting more than 24 hours that occur at least 30 days after the onset of a prior event, in the absence of fever or infection.
An MS relapse (also referred to as attack, exacerbation or flare-up) happens when new symptoms appear or old existing symptoms suddenly get worse in a person who has been diagnosed with MS.
Recording how long they last and what symptoms are experienced can help doctors learn more about what is happening.
Relapses can be very mild and have little effect on the ability to function or they can be severe and interfere with the capability to carry out normal tasks at home and at work. It is important to keep track of when these relapses occur.
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.
Experiences can sometimes be personal. MS can affect mood and cause depression and it is natural to feel like keeping some details to oneself – but speaking with a doctor is important.
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, those living with MS are the ones who make the decision.
Though it may be difficult at first, talking about thoughts and feelings can make it easier to deal with MS.
Community support groups like the Multiple Sclerosis Society of Canada (MSSC) provide services to people with MS and their families and fund 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 provide meaningful benefit to the greatest possible number of people affected by MS.
– Talking to a doctor
Doctors are partners in managing MS
Doctors can help with learning more about the condition, which treatment may be right for each individual, and provide management strategies for living with MS. Once a treatment decision has been made, doctors and MS nurses can also help with evaluating the risks and benefits, how to use the treatment safely and how to manage any side effects that may occur.
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 mixing medication or 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 a patient’s health.
Be prepared to describe symptoms, how they may be affecting daily life, any other medical conditions that may exist, and whether any other medications are being taken.
Make a list of changes that occur. Recording symptoms between appointments can be helpful.
Start by creating a “Questions to ask your doctor” list. Some things to consider include:
- Do I have MS or could another condition be causing my symptoms?
- Which form of MS do I have?
- How does MS progress?
- Is there any way to predict how my condition will change over time?
- What treatment options are available to me?
- What are the benefits and risks of each option?
- Do any of the available therapies alter the natural course of the disease?
- How are the MS drugs administered?
- Why are MS therapies taken by injection?
- Are there different injection schedules for the various MS drug treatments?
- Which treatment option would you recommend and why?
- Are some MS medications easier to use than others?
- How does the treatment work?
- When will the treatment begin to work?
- How long can I expect the treatment to keep working for me?
- What are the side effects and how should I manage them?
- Will the treatment interact with any of my other treatments, foods or activities?
- Do you have any other tips for coping with MS?
- Are there any lifestyle changes that would help me manage my MS?
- Where can I go for more information and support?
Others find that recording the visit (with the doctor’s permission) is helpful.
Some people like to bring a friend or family member 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.
Others may find it more helpful to take notes themselves. Bringing a pen and paper, recording device or smartphone to the doctor’s visit is recommended.
– MS and work
Everybody experiences MS differently.
Disease-modifying drugs, new technologies, better symptom management, legal employment protections and community resources can help you with employmemnt matters. Some people may find they can continue to work as before, while others may have to make changes and adjustments.
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:
• Whether or not the potential for flexible work hours are possible.
• Challenges regarding work stations may need to be
addressed (either needing to be relocated to a more
accessible place or adjusted if need be).
• Is there any interest in changing the type of work that is
being done, if necessary?
• Additional training or education may also need to be
An important role
Planning for uncertainty can be a challenge for people living with MS and their families and will require maintaining a healthy relationship in the face of challenges.
People with progressive diseases often have difficulty accepting help, while people who want to help also feel challenged. Either they do not know how they can help, or are told that they are not doing things the way they are supposed to be done.
Family members and friends will react and cope in their own way, and in their own time. MS will impact their lives as well. They may be faced with taking on more responsibility and having to manage their own feelings of depression, anger and stress.
It is important to adapt to the type of support that will be needed as MS progresses. What may have been supportive in the past may not be considered adequate for the future.
Strong communication is the key.
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 (such as helping with injections or being present when consulting with healthcare professionals) but later demand more daily attention (such as toileting, feeding, etc.). Emotional care will also play an important role as MS presents new challenges, and will demand flexibility and understanding for all those involved.
Employment, financial planning, transportation and housing considerations represent some of the many practical decisions that will need to be evaluated. Reaching out to those with the proper expertise will be important.
The more you can each learn about MS, the better able you will be to help deal with the challenges ahead.
Healthcare professionals are partners in MS
An MS healthcare team can include few or many members:
- Primary care physicians
- Rehabilitation specialists (physical therapists, occupational therapists, speech/language pathologists)
- Mental health specialists (psychologists, neuropsychologists, social workers)
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 educational resource. They are able to help with learning more about the condition, the treatment options available, how to use treatment safely and how to manage any side effects that may occur.
MS may leave some feeling frustrated and lonely, but there are thousands of patients, caregivers and healthcare professionals facing the same challenges every day.
Connecting with the MS community can work to inform and empower those affected by MS and help them effectively manage and cope with the disease.
Today, the internet offers those living with MS and their family and friends, access to health information that provides for more personal research and self-help.
Websites and social media channels (Facebook, Twitter, YouTube, etc.) can provide links to finding care and community health resources, the ability to consult with social support networks, and the ability to connect with people in similar situations to their own.
As people more actively and increasingly use the internet to help shape their own personal MS management program, it is important to remember that everyone’s MS situation can be different.
Discussing all new discoveries with medical professionals before taking any actions is critical.
Multiple Sclerosis Society of Canada (MSSC)
The mission of the Multiple Sclerosis Society of Canada is to be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.
Since their founding in 1948, the core support of the MS Society has been from tens of thousands of dedicated individuals, companies (like Biogen) and foundations in communities across Canada.
The head office of the MS Society is located in Toronto, Ontario. Division offices are located in Dartmouth, Montreal, Toronto, Winnipeg, Regina, Edmonton and Vancouver.
The MS Society provides services to people with MS and their families and funds research to find the cause and cure for this disease. They have a membership of 28,000 and are the only national voluntary organization in Canada that supports both MS research and services.
The MS Society strives to provide access to accurate, current and comprehensive information in a number of formats to people with MS, their caregivers, family and friends.