Healthy Living with MS: Mind, Body, and Soul

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Multiple sclerosis (MS) may affect various aspects of your daily life – but there are strategies you can use to care for your whole self – mind, body, and soul.

Some of the common symptoms of MS, such as fatigue, depression, and mobility problems, can interfere with maintenance of good overall health and well-being. The simple approaches discussed in this booklet can help you address these symptoms and/or work around the challenges they present. That said, achieving and maintaining good health when you have MS begins with disease-modifying treatment (DMT).

Staying well starts with MS treatment

After more than 15 years of experience treating MS with the four approved disease modifying therapies (IFN betas and glatiramer acetate), the benefits of uninterrupted treatment of MS have been well documented. Here's what we know:

• Taking a disease-modifying therapy soon after a diagnosis of MS or CIS reduces relapses by as much as one-third.
• Taking a DMT can delay the progression of the disease and the disability it leads to over the long-term.
• Medications only work when you take them as prescribed. Recent studies have shown that skipping doses or taking a “drug holiday” can lead to a setback in your control over MS.
• Not taking your DMT, even for a relatively short period of time, can increase the risk of having a MS relapse.
• Better adherence to therapy (i.e., taking it as prescribed) is associated with lower chances of relapse.

Mind

Having trouble thinking?

The demyelinating effects of MS can impair communication within the brain. In about 50% of individuals with MS, this tends to cause subtle problems with memory, attention, abstract reasoning, and word finding. These effects are often associated with some degree of emotional instability and a decrease in speed of information processing. Cognitive problems in MS do not seem to be related clearly to disease duration, severity, or disease course. They may occur early or later on in the disease, and in mildly or severely physically disabled patients.

Factors that might aggravate cognitive problems:

• Fatigue
• Sleep problems
• Depression
• Stress or anxiety
• Heat
• External distractions

Cognitive difficulties, along with the aggravating factors listed above, may interfere with your ability to treat your MS, your management of physical symptoms such as bladder function, and your efforts to become more physically fit or to connect with others socially. Addressing your cognitive and physical concerns may help relieve aggravating factors such as fatigue and depression.

Not taking your DMT, even for a relatively short period of time, can increase the risk of having a relapse.

Coping strategies…

• Organize your environment so that things remain in familiar places.
• Carry on conversations in quiet places to minimize environmental distractions.
• Use a notebook, diary, or electronic journal.
• Ask people to keep directions simple.
• Establish good eye contact during any discussion.
• Be willing to ask for time to think through decisions and to discuss them with other people. Don’t hesitate to ask for more information, or for information to be repeated or written down.
• Don’t try to hide your concerns. Talking about cognitive problems will usually be a source of relief to you and your family. Understanding the nature of a person’s difficulties may lead to easy practical solutions, such as using reminder notes and cues.

Cognitive retraining

Your memory may sometimes fail you, but individuals with MS can store new memories and are capable of learning new information. Cognitive/memory training programs are available online from a variety of sources. These teach ways of thinking and organizing facts so that they can be retrieved more reliably on demand. Visit MindTools.

As well, a pilot study of a five-week, group-based community program has shown success with strategies to help self-manage MS cognitive changes. These programs are thought to help by increasing participants’ understanding of MS-related cognitive impairments, improving their confidence in their ability to manage these difficulties, and increasing their use of management strategies.

Brain games – do they really help?

The jury is out on that, but a research grant is being sought by the developers of MyBrainGames, the first online games designed specifically for people with MS under the direction of a team of leading healthcare professionals specializing in MS and cognition, as well as members of the MS community.

The games challenge the player’s processing speed, working memory, attention, and taskswitching ability. Each game is available at varying levels of difficulty, and scores can be saved, so you can track your performance over time. To access MyBrainGames and the multitude of resources offered by the Collaborative, visit MyMSMyWay.

Body

No specific diet has been proven to affect the course of MS, but good nutrition and healthy activity levels can help keep you in fighting shape, so you can manage your MS effectively – and get the most out of life.

What’s a healthy diet?

• Low in saturated fats (avoid excess meat, eggs, dairy products).
• High in monounsaturated fats (canola oil, olives and olive oil, nuts, seeds, avocados) and polyunsaturated fats (flaxseed oil, fish and fish oil).
• Includes plenty of fruits, grains, and vegetables to help you promote heart health, avoid constipation, and maintain a healthy weight.

Drink your water

Six to eight cups (about 1.5 litres) of water per day is generally recommended to:

• Avoid concentrated urine, which can irritate the bladder and increase the chances of getting urinary tract infections.
• Help regular bowel function.
• Avoid dehydration and resulting fatigue: choose water over too much caffeine in the form of tea, coffee, and cola, which can dehydrate you.

Get moving

Difficulty walking is a common challenge for individuals with MS, due to a range of problems including spasticity, tremor, muscle weakness, fatigue, and poor balance and coordination. A decline in mobility often leads to a reduced participation in exercise, leading to muscle weakness and further loss of mobility. However, research has shown that exercise can help people with MS maintain their independence by increasing their mobility.

Individuals with MS who are affected by depression tend to be less physically active and have less physical work capacity compared to the general population. Numerous studies have found exercise helps relieve depression in the general population, as well as those with chronic diseases including MS.

Set goals

Aim to maintain and, if possible, improve your current level of joint flexibility, muscular strength and endurance, and cardiorespiratory endurance.

Do what you enjoy

Both aerobic and non-aerobic forms of exercise such as walking, jogging, cycling, light circuit training, and weight training have been shown to be beneficial. Individuals that persist with an exercise routine over several months tend to have the most positive effects; you can increase your staying power by choosing activities you enjoy. Consider low-impact activities such as swimming and recumbent cycling, or yoga and tai chi, which provide additional mind-body benefits.

Work it up…

Start slowly and gradually progress the intensity and duration of your workouts. Aim to exercise aerobically at least 30 minutes three times per week, and strength train on alternate days twice per week. Stretching exercises to improve your range of motion should be done before every workout.

…but take your time

Does working out wear you out too quickly? It appears that taking breaks during physical activity may be a good idea. A recent study suggests a few breaks can improve fatigue related to exercise, and that may help people exercise for longer periods overall – it may take longer, but you achieve the same results.

Group exercise may have special benefits

Exercising or outdoor activities can boost your outlook especially when you’re enjoying yourself with others. Considering walking or cycling for exercise? Put your hard work to good use! Set a goal to participate in an upcoming MS walkathon or bikeathon. Or go for the gusto and look into Dragon Boating, with the MS Society or community group.

Soul

You know the old saying: “When life deals you a lemon…” perhaps the answer is to “embrace life!” That may mean taking the time to stop and meditate on the moment, or it may mean getting out to enjoy the company of others.

One thing that makes living with MS difficult is its unpredictability, and that’s where cultivating the right state of mind may help. Mindfulness – the non-judgmental awareness of the present moment – is a form of meditation that may help people with MS cope. A study of an eight-week program found that mindfulness training improved quality of life and well-being in people with MS. This effect was greatest in those who entered the program with significant levels of depression, fatigue, or anxiety.

Getting out with others is also a great way to improve your quality of life. Thanks to the MS Society of Canada and Cineplex Entertainment, now you can plan a movie night with family and friends! Visit Access2 to get the whole story, and to apply for your own Access 2 Entertainment Card.

How does the Access 2 Entertainment Card work?

Simply present your Access 2 Entertainment Card when purchasing tickets with your support person at participating movie theatres. It really is that simple! You pay the regular admission, and your support person gets in for free (or gets a substantial discount). Individuals with a permanent disability who require a support person when attending a movie theatre are eligible for the card. There are no age restrictions. The applicant (or guardian) must agree to follow the terms and conditions for use of the card.

Mind, body, and soul

All-around well-being involves caring for your whole self – mind, body, and soul. Staying healthy with MS begins with your commitment to take your disease-modifying therapy as prescribed. Then, pursuing a healthy lifestyle with the right blend of nurture for body and soul can help you get the most out of life. There are no small victories! Whether your goal is to walk around the block or to compete in a marathon, staying positive and living life to its fullest is its own reward.