World MS Day brings the global MS community together on May 30 to share stories, raise awareness and campaign with everyone affected by multiple sclerosis (MS). The theme for 2022 World MS Day 2022 is ‘Connections’.
We’ve asked our Senior Consultant Mary to share her expertise on working with clients with MS and how LiveBig can support people living with multiple sclerosis to live well.
“Multiple sclerosis (MS) is a progressive, autoimmune disease of the central nervous system whereby the immune system attacks and damages the myelin (the protective layer around nerve fibres). It interferes with nerve impulses within the brain, spinal cord and optic nerves causing varied and unpredictable symptoms, depending on which part of the central nervous system is affected and to what degree. The most common symptoms are fatigue, pain, cognitive changes, bladder and bowel issues, heat sensitivity, spasticity, problems with vision, brain fog and changes in emotion. Some symptoms are immediately obvious whilst other signs such as fatigue, numbness and cognitive fog, can be invisible.
MS affects every individual differently and for some can progress gradually whereas others have exacerbations of symptoms followed by periods of remission. MS can affect many aspects of someone’s life including; relationships, daily tasks, employment, health and overall wellness. Although there is no cure for MS, medications as well as a number of lifestyle factors can support someone to live well with MS.
There is increasing evidence that stress can cause exacerbations in people with MS. We are also aware of the negative effects stress can cause in terms of our overall health and therefore it is important to try and manage stress as best as we can (Lalive et al. 2002). Some of the ways that you can manage stress include: meditation, diet, breathing exercises, exercise, social support, planning and prioritising tasks, work-life balance, listening to music and seeking help from your health professionals and family/friends.
Managing temperature sensitivity:
Temperature sensitivity affects between 60-80% of people living with MS, whereby neurological symptoms are temporarily worsened by environmental or exercise induced temperature changes in the body (increase or decrease in temperature) (Christogianni et al. 2018). An exacerbation of symptoms such as fatigue, cognitive fog or changes in sensation can impact on a person living with Ms’ ability to complete their daily tasks; socialisation, attending the community, going to work, engaging in cooking activities etc. It is important to understand if you do experience temperature sensitivities and try to then maintain your core body temperature as much as possible.
If it is a hot day, think about planning the time of the day that you go into the heat, can you put drink bottles in the fridge or small portions of fruit in the freezer to eat through the day, try to park your car in shady areas, use a desk fan at work, work from home on hot days if possible and complete exercise in air-conditioned environments. There is equipment that you can purchase (speak to your Occupational Therapist and Support Coordinator about funding) that can support managing heat sensitivity. A few of my favourites are E-Cooline https://www.e-cooline.com.au/ for cooling products and Zarkie for heated clothing https://www.zarkie.com.au/heated-clothing/battery-powered/?v=3a1ed7090bfa.
Diet and nutrition
It is important to note that no MS specific diets have found to be evidence based for individuals living with MS. Therefore, the evidence that is available recommends that people with MS should follow the same dietary guidelines as the general population: https://www.eatforhealth.gov.au/. This would include eating a wide variety of nutritious foods from the 5 food groups every day, drinking lots of water and limiting foods containing saturated fat, sugars and alcohol (MS Research Australia. 2020).
When thinking about how you can eat healthy throughout the week planning and organising will be integral to eating healthy. If you can prep your meals on the weekend, cook meals that suit your strengths, speak to an Occupational Therapist about assistive equipment that you can use in the kitchen to assist with fatigue or fine motor tasks (perching chair, different utensils etc.), use frozen or already cut vegetables and take regular breaks if required.
If you are unsure about how you can implement a health diet into your current routine or are unsure where to start reach out to an Accredited Practicing Dietician for some support. You can access a dietician by speaking to your Support Coordinator to see if you have NDIS funds available or through the chronic disease management plan from your GP: https://www.servicesaustralia.gov.au/chronic-disease-gp-management-plans-and-team-care-arrangements
Evidence shows that overall participation in exercise by people with MS is lower than the general population which does increase risk of other health problems associated with inactivity. Evidence shows that being active can improve physical fitness, functional capacity and quality of life in people with MS. In more detail exercise can assist with management of MS symptoms, including; mobility, fatigue, balance, cognition, depressive symptoms, pain, quality of sleep, memory and quality of life (MS Research Australia. 2020). It is important that you consult your treating health professionals to develop a safe and effective exercise routine for you before engaging. You may even have funding in your NDIS plan for personal training, exercise physiology or physiotherapy supports – speak to your Support Coordinator to find out or ask at your next NDIS plan review to have supports added.
Understand the disease
It is important to speak to your Health Professionals about what type of MS that you have as there are 4 different types which can assist you to understand if symptoms that you are experiencing are normal or different. There are many different apps that you can use to assist in tracking your MS symptoms and to determine what might be some of your triggers for exacerbations which you can then try to manage in the future. It is also integral to always ask for help from health professionals if you have any questions or are unsure.”
If you would like further information about how to live well with MS, here are a few ideas below:
- Speak to your Neurologist
- Speak to your MS nurse
- Speak with your Physiotherapist or Occupational Therapist or General Practitioner.
- Speak to Multiple Sclerosis Limited – MS Connect
- Review MS Australia Adapting Your Lifestyle, A Guide For People With MS: https://www.msaustralia.org.au/modifiable-lifestyle-guide-2020/