Multiple Sclerosis

A brief summary of the content from the Multiple Sclerosis MOOC (biology, symptoms, types, risk factors, disease factors, living with MS); a possible social work practice approach using problem-solving and solution-focused approaches

This page has three sections:

1. Background Material that provides the context for the topic

2. A suggested Practice Approach

3. A list of Supporting Material / References

4. Appendix 1: Ageing well with MS

Feedback welcome!

Background Material

Source: Understanding Multiple Sclerosis Massive Open Online Course (MOOC),

a free university accredited course accessible from https://ms.mooc.utas.edu.au/

Biology: MS occurs when the immune system attacks the central nervous system.

• Inflammation leads to formation of plaques or lesions on the brain, spinal cord or optic nerves

• Demyelination interferes with neuronal transmission and leads to neurodegeneration

• Remyelination is inhibited so neurons can’t recover

Symptoms:

• MS can impact anywhere in the body.

• Every person living with MS experiences MS differently, and may have a different set of symptoms.

• MS symptoms are variable, meaning that they change over time. They may worsen in response to the environment or situation, such as high heat. On occasions some symptoms will go away and others will emerge.

Types of MS:

• Relapsing-remitting MS (RRMS): 80%, relapses (lasting from a few days to a few months) followed by remissions. When in remission symptoms get better but are worse than they were before the relapse.

• Primary progressive MS (PPMS): 10 – 15%, gradual worsening of symptoms (progression) with no relapses or remissions.

• Progressive relapsing MS (PRMS): 5%, progression with relapses, but do not experience remissions.

• In some cases people diagnosed with RRMS move to progressive MS where relapses and remissions cease and MS gradually worsens. Alternatively some people experience gradual progression of symptoms but also experience relapses without remissions.

Demographics: there are about three times as many women living with MS than men, i.e. a ratio of 3 : 1.

Risk factors:

Non-modifiable factors

• Genetics – MS appears to be 50% heritable, so family history is the best way to determine genetic risk. However, in MS genetics are complex. Someone might carry hundreds of different genetic variants that increase or decrease their risk of developing MS. Those variants come together maybe to increase their risk slightly of MS. But you need some environmental exposure to develop MS. So, there's not a single genetic cause of MS, it's a complex disease.

• Age – people are most at risk of developing MS in their 30s.

• Biological sex – females have a threefold risk of developing relapsing-remitting MS than males; however males are two to three times more likely to develop primary progressive MS than females

• Exposure to certain viruses, e.g. Epstein-Barr (glandular fever) and infectious mononucleosis (mono).

Modifiable risk factors

• Being overweight increases the risk of MS onset; however there is little evidence to determine its effect on MS progression.

• Smoking increases both the risk of MS onset and progression

• Low (deficient) vitamin D level

• Low amounts of sun exposure

• Diet – some dietary patterns, such as diets that are generally very healthy and have a high amount of omega 3 fatty acids and are rich in nutrients, can reduce the symptoms of MS.

Modifiable risk factors depend on a healthy lifestyle, i.e. no smoking, eating a healthy diet, regular exercise, sufficient levels of essential vitamins such as vitamin D.

Management of risk factors: Risk factors can be managed by setting SMART goals (specific, measurable, achievable, relevant and timely).

Disease Management:

• Monitoring – check the progress of MS, especially effectiveness of treatments / strategies

• Symptom management approaches – exercise, brain and cognitive exercises, cognitive behavioural therapy (CBT)

• Behaviour changes – quit smoking, eat a healthy diet, exercise

• Disease modifying therapies - medications

• Support – create a support network (family, friends, healthcare providers, MS society, peer-to-peer, education). Communication (clear, honest and kind) is key to maintaining relationships and gaining good support.

• Resilience is the ability to recover from challenges.

Living with MS

The biggest monetary costs of MS are lost wages due to missing work and the cost of medications. Disease management is really important for maintaining employment. This includes making reasonable adjustments to the work environment to allow a person living with MS to do their job effectively.

Building resilience is important: have meaningful relationships, exercise, get enough sleep, manage stress, set goals, practice gratitude, practise mindfulness and active relaxation, use problem-focused coping.

Source: International Multiple Sclerosis: Management Practice

https://www.imsmp.org/services/social-work

Social workers can provide the following for patients and their families

• Psychosocial assessment

• Facilitating MS support groups around specific situations and topics such as newly diagnosed, coping with disease progression and others suggested by patients.

• Supportive counselling

• Assistance with navigating various applications, e.g. disability

• Employment issues: accommodations necessary to keep employed, how to ask for accommodations, mediation between person with MS and employer

• Referral to home care agencies, and other allied health professionals, e.g. occupational therapists

• Assistance with accessing meals-on-wheels and transportation services

• Family meetings

Practice Approach

0. [(If necessary), Establish a working relationship – with empathy

• Outline what I know about MS

  • Biology – demyelination in CNS

  • Symptoms – variable for individuals

  • Types – progressive or relapse/remission

  • Some risk factors are modifiable

  • Management by environmental approaches and medication

• Find out about the specific MS]

1. Explore the problem

• Ask about the specific reason for seeking assistance.

• Explore this

  • What is the issue?

  • When did it start?

  • How have they responded?

  • How do they normally respond to problems?

  • How has it affected them?

• Conduct BPPS assessment, especially around support (family, friends, medical, peer-to-peer, education), stressors, client’s strengths and protective factors

• Check Maslow’s Hierarchy

• Identify the problems so both client and social worker agree on this (single sentences)

2. Examine possibilities and solutions

Use Problem Solving / Task Centred / Solution Focused approaches. For example:

• Brainstorm tasks (What has worked before? What are your strengths that may help achieve the goals?)

• Consider obstacles to completion and how the client’s strengths can help manage these.

• Identify goals that are measurable, specific, concrete and achievable in a reasonable time frame (i.e. SMART goals). Frame them in positive language.

• Use miracle question – What would it look like if things were just the way you wanted them to be? Consider pros and cons of various strategies for achieving goals

• Scale these goals on a scale of 1 – 10, i.e. where things are now and where they would be if successfully achieved.

• Decide on a course of action and specify the responsibilities of worker and client with time lines (role playing may be appropriate)

3. Undertaking work together to resolve or address the problem or issue

• Carry out the plan and evaluate, alter, (i.e. adjust approach) and then move to another issue if necessary

4. Finishing the work together, often with a review

• Discuss progress to goals and finishing the relationship regularly during the process

• At the end of the process summarise client achievements, skills, positives and areas to be aware of. Discuss managing future problems that may arise.

Supporting Material

(available on request)

Understanding Multiple Sclerosis (2021). An online course. An initiative of Wicking Dementia Research and Education Centre and Menzies Institute for Medical Research. Duration: 6 weeks. Effort: 2 hours per week. https://ms.mooc.utas.edu.au/

International Multiple Sclerosis (2017). Management Practice. Retrieved from https://www.imsmp.org/services/social-work

Appendix 1: Ageing Well With MS

Ageing Well With MS is free online course (4 – 6 hours) conducted by the Menzies Institute at the University of Tasmania.  Enrol at https://ms.mooc.utas.edu.au/.  The following is a summary of key points made in the course.

People with MS can now expect to live well into later life

The most recent estimates show that people living with MS now have a life expectancy only about six years lower than people in the broader community. This gap in life expectancy continues to get smaller as treatments for MS continue to improve. 

The ageing process can make MS symptoms worse and may also cause new symptoms.  As people age, their bodies change. MS symptoms overlap with those common in older adults, making it hard to distinguish between MS-related symptoms, those from other conditions or simply effects of ageing.  Ageing can worsen existing MS symptoms or cause new symptoms.

Neurological function

Overall, people with MS typically have worse short-term memory, balance, and fine motor skills compared to those without MS, although the extent of this difference can vary widely between individuals.  People living with MS lose some of their cognitive reserve – or mental backup -  making it harder to complete tough mental tasks.  Doing activities that challenge the brain, including sudoku, learning a language or playing a musical instrument, can help maintain that reserve.

To figure out if the changes are due to MS or ageing, health practitioners may look at how quickly changes happen. Ageing-related changes usually occur slowly, over months or years. MS-related changes tend to happen faster, over days or weeks. If symptoms progress faster than expected, it could also be due to MS. However, factors such as another medical condition or stress could also be responsible. 

Walking and balance

Typical ageing involves slow changes, and includes:

• loss of muscle mass, which leads to loss of muscle strength

• reduced flexibility

• poorer vision

• small reductions in sensation

• longer reaction times.

Changes in walking and balance over days or weeks may be due to MS.  Regardless of whether changes are caused by ageing or MS, the key is to determine if improvements can be made through physical exercise or if adaptations and/or aids are necessary. Physiotherapists, exercise physiologists, and occupational therapists can offer guidance on enhancing strength and flexibility, and utilising mobility aids.

Menopause

Women with MS typically go through menopause around the same age as other women in the community (51 years).  Menopause symptoms can be similar to MS symptoms, including hot flushes, night sweats, and insomnia. This means that women of menopausal age can have symptoms such as fatigue, cognitive impairment and changes in mood from two different sources (i.e. MS and menopause).

Pelvic floor

As people get older, the muscles in the pelvic floor can weaken, just like other muscles. Pelvic floor and bladder symptoms in people with MS are as likely to be due to ageing (and oestrogen) in women as MS.

Comorbidities

When a person has comorbidities, it means they have more than one health condition or disease at the same time.

It’s very common for people with MS to have comorbidities. In the Australian MS Longitudinal study (a study of Australians living with MS, with ~2500 active participants), 93% of participants aged 22-89 had one or more medical conditions in addition to having MS (2020 data).  This is higher than the general population where it’s estimated 75% of Australians aged 18 and older have two or more long term health issues (National Health Survey, 2022).

The most common comorbidities in people living with MS are anxiety and depression (affecting ~40% of people with MS). Other common medical conditions in people with MS are allergies, migraines and osteoarthritis.

Managing MS on its own is complex for medical practitioners, but it gets even harder when there are other medical conditions to deal with. One reason is because these conditions might have conflicting needs. For instance, someone with diabetes might need exercise, but if they also have weakness or spasticity from MS, the exercise program may need to be adjusted. 

Using medications (polypharmacy)

People with multiple medical conditions often need to take a number of different medications to manage their health. Older people without MS often have multiple medical conditions and use multiple medications, and this is even more marked in people living with MS.

It is important that people with MS keep track of the medications they are taking and make sure they are the best fit for the person.  The GP or pharmacist should be the first port of call.  After that the neurologist should be consulted, especially about specialised MS medications.

Strategies For Ageing Well

Maintain a healthy brain

Most advice on maintaining a healthy brain is focused on preventing dementia. However, this advice is helpful for older people more broadly, including older people with MS. 

• Eat a balanced diet, i.e. follow the dietary guidelines for the country where one lives (e.g. Australian Dietary Guidelines)

• Exercise.  Physiotherapists can provide exercises that target limitations in physical functioning.  Use mobility aids when necessary.

• Don’t smoke cigarettes

• Good sleep, including basic sleep hygiene such as keeping a regular bedtime and a good routine for going to bed.  Limit screen time and avoid caffeine close to bedtime.

• Mindfulness

• Engage with your community, including family, friends and neighbours (social connectedness)

• Watch/listen to/read about news and current affairs

• Engage with others in discussing news and world affairs

• Read books, listen to podcasts, use the Internet

• Do sudoku, crosswords, jigsaw puzzles

• Develop new skills – learn a language, a musical instrument

Manage the ageing pelvic floor with help from GPs or pelvic floor physiotherapists.  Pelvic floor physiotherapists can help with sexual difficulties caused by bladder or pelvic floor issues. 

Maintain physical and emotional wellbeing by keeping on doing what is important to the person.

Building resilience is important:

• get enough sleep

• exercise

• eat a healthy diet

• social participation

• meaningful relationships

• mindfulness and being active in the moment

• active relaxation (different from escapism)

• think about where one finds joy, and practise gratitude

• goal setting and a sense of purpose (both short term and long-term goals)

• know one’s strengths and play to them

• improve self-talk and coping strategies (more on that later)

Plan For the Future

Stopping disease modifying strategies

Older people with MS sometimes wonder if they should continue using disease modifying therapies (DMTs). This is because some disease modifying therapies are less effective in older people, or there is less information on effectiveness of disease modifying therapies in older people.

Some older people with MS experience reduction or even complete halting of disease activity, and those people can stop disease modifying therapies (DMT’s). However,  there’s not enough evidence to help neurologists decide who needs to stop taking DMTs. And it’s difficult to determine who has inactive disease, as a person’s relapses may only have stopped because their DMTs are working.

Managing work with MS

If people are struggling with work, making adjustments can help them stay in work for longer. Modifying or adjusting hours of work, or the location of the workspace, can make a big difference. Many services offer advice and support for people experiencing work challenges and wanting to stay employed.

Practical considerations include:

• People who become fatigued in the afternoon, could work more days of work but reduced hours

• Working from home, at least some days of the week?

• For mobility issues, locate the workstation closer to the entrance or exit to the office

• For continence issues, locate the workstation closer to the toilet

• For difficulty driving, explore subsidised subsidised transport schemes

• Consider if transitioning into retirement would be an option

Practical considerations

Plan early, plan often and plan well.  Planning isn’t just one-off. It's an ongoing conversation about living the best life. Plans made earlier might need some adjustments; they’re not necessarily set in stone.  Questions to ask:

Where you live:

• Do you live centrally (where lots of services are available), or rurally (limited service availability)?

• Hazards inside your home – remove trip hazards (such as rugs), install grab rails.  

• Hazards outside your home– does the layout of the paths suit your needs?

• Could you move around your house safely if you needed mobility aids?

• Might you need to move location entirely? For example, to a house with no stairs, a retirement home or even a residential care facility?

How you get around:

• Mode of transport– is your car suitable for your current needs?

• Are you eligible for a disability permit for driving your car?

Your general health:

• Are you going to regular checks that are available to you, including eye and skin checks, hearing, regular blood tests?

• Are you managing your all your symptoms well or do you need to discuss some with your care team to see whether they can be managed better?

• Are you ensuring you get enough sleep?

Your finances:

• Could you seek advice from a financial advisor about your finance?

Getting help:

• Could you benefit from a medic alert bracelet? Or an emergency alert device that you can activate if you need help in an emergency?

• Could you arrange a system where friends, family or neighbours check on you regularly?

• Have you planned who to inform if you fall or need help urgently?

Making your wishes known:

• Would you benefit from an "advanced care directive" to document your wishes for the future if you can no longer make your own decisions regarding where to spend time, or what types of activities you enjoy?

• Is your will up to date?

• Have you set up Power of Attorney (where you state who has the authority to make medical or financial decisions if you are unable to do so)?

Community supports may be available

• Exercise physiologist. They can create appropriate exercise programs for people with a broad range of health issues.

• Physiotherapist. They can use physical techniques, including exercises and mobility aids, to help treat medical conditions and injuries, with a focus on improving function.

• Occupational therapist. They can provide advice, programs and aids to retain independence and the ability to participate in everyday activities. This might include helping improve your environment, with installation of ramps or handrails.

• MS nurse. They can provide education, advice and clinical care including symptom assessment and management for people with MS)

• Podiatrist. They can treat conditions affecting your feet including injuries, pain and issues with balance.

• Dietitian. They can provide general advice on eating a healthy, balanced diet, or specialised advice if you have specific needs or restrictions such as diabetes or food allergies.

• Continence nurse/pelvic floor physiotherapist. They can provide advice and treatment plans for people with incontinence and bladder, bowel and pelvic floor dysfunction.

• Personal carer. This includes services such as showering or shaving.

• Gardener. They can provide weeding or lawn care.

• Cleaner. They can provide laundry and general cleaning services and laundry.

Use technology

Technology can include anything from simple gadgets for opening jars to new technology like apps.  MS associations may be able to help with guidance.  Some tools to make daily tasks easier include:

• kitchen tools such as a food processor to help prepare food more efficiently

• websites and apps to do your grocery shopping online

• gadgets such as a shoehorn to help you dress

• e-books to help you read text more easily e.g. larger font

• text to speech apps that read out emails, websites or text messages

• video conferencing apps such as Zoom for medical or social appointments

• medication reminders and pill tracking containers and apps

• apps for finding wheelchair accessible locations, or public toilets

• smart watches to monitor sleep, heart rate and falls

Transitioning to residential care

People living with MS may need to move to residential care younger than others in the general community.  "The right time [to move to residential care] is when you've exhausted all options in your current living environment." René Wise, Nursing Manager.  Factors to consider when choosing the right home tend to be a mix of location, features, price and availability. Some suggestions for what to ask residential care providers when looking for care include:

• When can I have visitors?

• Can I bring my pet?

• What car parking is available?

• What meals are on the menu? (ask to view the previous months as an example)

• What’s the Wi-Fi access like in the room that I will be living in?

• What types of outings do you offer?

• Do you provide transport to places I might need to go? (vs needing to access taxi/Uber)