Living with Multiple Sclerosis – the many things you can do

Keeping physically active not only improves overall wellness, but can be very helpful in the management of MS symptoms. Exercise can improve the health of your heart, improve overall strength, improve balance, boost mood and cognitive function, increase flexibility, and help with bladder issues. Your MS team of caregivers will work with you to tailor a program that suits you, and works around your individual interests and ability.

Exercise doesn’t have to be limited to cardiovascular workouts. Any form of physical activity, such as walking, gardening, or completing chores, can be beneficial as long as it is done safely. Many patients with MS find exercising in water very beneficial as the support of the water allows them to move and stretch in ways not otherwise possible. It can help improve flexibility and stretch tight muscles.

When MS causes weakness in the core muscles, it can cause trunk instability which leads to imbalance and falls. Core strengthening and stability exercises have been proven to improve trunk stability and decrease imbalance. A mixture of endurance and strength training exercises can decrease fatigue, imbalance, and fall risks leading to a better quality of life.

It is increasingly recognized that exercise also helps rewire and repair the nervous system.

Always discuss your exercise program with your care team to avoid any injury and remember to stay hydrated and avoid overheating. Build-up your exercise plan slowly with the guidance of a professional and always remember to stretch afterwards.

Switching to a healthy diet has been proven to be beneficial for people with MS, helping to alleviate some of the symptoms of the disease. While there are many ‘strict and specific’ diets talked about that claim to have benefits, there is no conclusive evidence that these will be beneficial overall, so, doctors do not recommend one specific diet or supplement.

However overall changes that focus on healthier foods can really make a difference. The best approach to maintaining a healthy diet is eating well-balanced meals that you enjoy. Following an extreme or unrealistic diet is not sustainable in the long-term, and you will probably not be able to maintain it if it is difficult to follow and you do not enjoy it. Eating well can improve fatigue, depression, and constipation. A poor diet not only impacts overall health but can make symptoms such as pain and weakness a lot harder to manage. Always be careful when changing your diet to ensure that you are not cutting out important nutrients.

A large-scale US study into the diets of MS patients found that those with the overall healthiest diets, consisting of lots of fruit, vegetables, and wholegrains, had lower levels of disability and lower burden of symptoms, including pain and cognitive impairment.

A healthy diet should start with the basics; it should be balanced and contain all the nutrients you need:

• Try to increase fruit and vegetables
• Take adequate protein from animal or plant sources
• Choose carbohydrates that are wholegrain
• Reduce intake of fatty, salty, and sugary food
• Drink plenty of water
• Food rich in vitamin D, which can help reduce the need for supplements

1. Low levels of vitamin D have been linked with a range of medical conditions, including an increased risk of getting MS, as well as more frequent relapses and an increase in disability. Good sources of vitamin D include:

• Increased exposure to sunlight: just 20-30 minutes outside a day, 2-3 times a week, exposing your face and forearms to sunlight, can help increase your vitamin D levels. However, exposure to sunlight alone may not be enough, especially if your skin is dark or you choose to cover up while outside.
• Food rich in vitamin D: includes oily fish like salmon, canned tuna, sardines, as well as liver, eggs, and mushrooms.
• Vitamin D supplements: these can be taken in the form of tablets, capsules, or drops.

1. Dieticians and nutritionists are part of the multidisciplinary care team who will work with you to support your nutritional requirements. Together, you will decide on a diet plan that suits you and can support all your medical needs.

Getting enough sleep is key to maintaining overall wellness and staying healthy. But living with MS can make this difficult. A lack of quality sleep can make some MS symptoms worse and can impact mental health. Sleep related issues associated with MS include insomnia (difficulty falling and staying asleep), getting too much sleep, breathing difficulties when asleep (called apnea), falling asleep uncontrollably (narcolepsy), and many more.

Sleep issues related to MS can be caused by lots of things, including side effects of medication, nutrient deficiencies, reduced physical activity, or emotional changes such as anxiety and depression. Your care team will work with you to help you identify any sleep issues you might be experiencing and identify things you can do to address them. This may include treating symptoms that are causing sleep interruptions, reviewing side effects of medication, and if necessary, exploring medication to aid sleep.

There are lots of effective things you can do to help improve sleep. These include:

• Reducing caffeine intake
• Ensuring your bedroom is the right temperature and dark enough
• Creating a bedtime routine that you stick to every night to help you relax and prepare for sleep, which includes a period of doing something that relaxes you
• Making sure you go to bed at the same time every night, and wake at the same time, as this helps your biological clock to set
• Not exercising for 4 hours before sleep as it is a stimulant
• Reducing fluid intake a few hours before bedtime so you don’t wake needing to use the bathroom
• Not using your phone or any other device in bed – bed should be for sleeping only
• If you don’t fall asleep within 20 minutes, get up and do something relaxing rather than lying in bed and watching the clock

Anyone who smokes, or who is exposed to second-hand smoke, is at a greater risk of developing MS. It can also speed up disease progression and make symptoms worse. Those who smoke may also not benefit from the full effects of disease modifying treatments.

Quitting not only has an impact on overall health and wellness, but it can also have a big effect on MS symptoms and disease progression. It can help to improve strength, cognitive ability and reduce the level of disability. There are many strategies available to help support you to quit, including emotional support and medication. Stopping smoking can be hard, so a positive attitude is very important. Your care team, together with family and friends, are invaluable in helping you to quit for good.

Being diagnosed with an unfamiliar chronic disease, with no cure, can be very stressful. Because MS often affects young people who have previously been healthy, it can be even more upsetting. The unpredictability of the disease makes MS very stressful, as well as the invisibility (or visibility) of symptoms, and the physical symptoms themselves. Adjusting to the disease can also be a long and stressful process. Many people with MS feel that when they are going through a stressful time in their lives, their MS symptoms seem worse.

Psychological care can be an important part of your stress management program. Psychologists can help to identify stressors in your life and examine ways in which you might cope with these difficulties. Sometimes stress can be exacerbated by the way we think about situations. A psychologist can help you to identify patterns of thinking which contribute to your stress and help you to develop new, healthier, thinking patterns. In addition, psychotherapy can help you to better express your emotions, including those about your MS, and develop strategies for better communication.

Many people living with MS experience depression and are at a higher risk than the general population. There are many factors which can contribute to depression; sometimes, the diagnosis of MS itself can bring on temporary low mood, as the person adjusts to and copes with their new diagnosis, or a person with MS may feel sad or down during a relapse. People with MS may also experience grief related to the impact that MS has on their lives, and it can impact worries about the future.

The progression of MS can also cause depression. The disease can damage the parts of the brain involved in emotional expression and emotion regulation, and MS related changes in the immune and neuroendocrine system can cause low mood. Some medications for MS can also trigger or worsen depression.

Think first about who you want to tell, how much you want to tell them, and your reason for telling them. This will vary greatly between friends, family, and employers and colleagues. Different people may react in very different ways, and not always how you might anticipate or like. Family and friends may be surprised, emotional, or upset. Colleagues may question what impact the diagnosis may have on them, or your ability to work. Some people may avoid discussing MS with you as they feel they don’t know what to say. Be prepared to keep talking to them and listen to their questions. Discussing a diagnosis with a partner can be very difficult, but an open dialogue is key to maintaining a healthy relationship. Couple’s counselling can be very helpful and teach you ways in which to communicate more effectively.

Talking to your children about an MS diagnosis can be very daunting. But being open and honest can really help them to understand what is happening, and how the disease will affect the family. Only you can decide when it is the right time to tell your children, and every child is different so anticipating how they will react is difficult. Some may not want to know the details, while others may have many questions.

You may find that you have to ask your children for extra help around the house. They might like the extra responsibility, or they may be resentful. Always let them know how valued their assistance is and remember not to make them feel that they have become a carer. Talk to your care team if you find yourself needing extra assistance in the home. Studies have shown that overall, telling children about MS is helpful, as long as you remind them that while things will change, your love for them won’t.