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Secondary progressive multiple sclerosis

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We hope you find the information in this book helpful. If you would like to speak with someone about any aspect of MS, contact the MS Trust information team and they will help find answers to your questions.This book has been provided free by the Multiple Sclerosis Trust, a national UK charity which works to improve the lives of people affected by MS. We rely on donations, fundraising and gifts in wills to be able to fund our services and are extremely grateful for every donation received, no matter what size. Please visit mstrust.org.uk/donate to find out how you can support our work.

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IntroductionOver time, many people originally diagnosed with relapsing remitting multiple sclerosis will find that the pattern of their MS has changed and that they now have a type known as secondary progressive MS or SPMS. This transition can be a challenging time, requiring a different approach to managing the condition and possibly contact with a different range of health and social care professionals.

This book is written as an introduction to secondary progressive MS – both for those living with the condition and for their family and friends. It aims to give an outline of what is happening in this type of MS, how it is identified and why making a diagnosis is not straightforward. The book also looks at how rehabilitation is used in the management of the condition and some of the health professionals who may be involved.

Sometimes thought of as a neglected area of MS, interest in finding ways to treat progressive MS is increasing and the book looks at some of the research areas currently being explored.

The text is illustrated with the comments and experiences of health professionals and people who live with secondary progressive MS.

If you have specific questions on any aspect of MS, contact our Enquiry Service on 0800 032 3839 or [email protected]


Contents

Introduction 3

1. What is secondary progressive MS? 6

2. Diagnosing secondary progressive MS 12 • Things that can make the change hard to spot • Sustained progression • How is secondary progressive MS diagnosed? • Managing the transition

3. The transition to secondary progressive MS 17 • The effect of words • What the future holds • Stopping disease modifying drugs • The role of the MS nurse

4. Coming to terms with the transition to secondary progressive MS 21 • Gaining psychological support • Acceptance and commitment therapy (ACT)

5. Managing secondary progressive MS 28 • Drug treatment • Self-management • MS nurses • Support from specialist health services • Rehabilitation • Prevention of complications

6. Research into secondary progressive MS 39 • Collaboration in research • Future research priorities • Neuroprotection • Repairing and replacing myelin • Trials of disease modifying drugs

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7. Tips for coping with secondary progressive MS 46

8. Living with secondary progressive MS 48 • Living well – health awareness, activity, diet • Work • Welfare benefits • Maintaining social relationships • Reflections on living with secondary progressive MS

9. More information 55 • Other MS Trust publications you may find helpful • Online support groups • Benefits and legal advice • Getting around • Equipment and adaptations • Relationship support • Health and social care information and carer support • Holidays


What is secondary progressive MS?

MS is a complex and unpredictable condition that varies widely from person to person and does not follow a set pattern. However, there are a number of ‘types’ of MS that have been used to try to broadly group individuals in accordance with how the condition has developed.

Originally MS was classified into two main clinical subtypes:

• relapsing remitting MS – characterised by periods when symptoms flare up (relapses) followed by periods of good or complete recovery (remission)

• progressive MS – where progressive deterioration occurs over months or years.

However, over the years clinical evidence pointed to there being three main subtypes of MS. As well as clinical differences being noted within the group with progressive MS, there were also found to be differences on magnetic resonance imaging (MRI) scans of the brain. Therefore, in 1996 following the results of an international survey, the National Multiple Sclerosis Society Advisory Committee on Clinical Trials of New Agents in MS proposed that the group of people with progressive MS should be further sub-divided to distinguish between those with progression that occurred primarily from the outset of the condition – primary progressive MS – and those whose progression followed on secondarily after an initial relapsing remitting course – secondary progressive MS. They also recommended the inclusion of progressive relapsing MS for those with progression from the outset of the condition who also experienced occasional relapses. In 2013, following the results of a follow up survey, the Committee recommended that clinically isolated syndrome (CIS), the first episode of neurological symptoms a person experiences lasting at least 24 hours, should be added as a new subtype.

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They also recommended that progressive relapsing MS be removed as a subtype and that additional descriptions be added to each of the three main subtypes of MS.

Multiple Sclerosis type descriptions

Health professionals may describe MS as being

Type of MS these descriptions are used for

active showing evidence of new relapses or lesions on MRI scans over a specific period of time characterised by demyelination and inflammation

Relapsing remitting MSPrimary progressive MS Secondary progressive MS

not active showing no evidence of new relapses or lesions on MRI scans over a specific period of time

Relapsing remitting MSPrimary progressive MS Secondary progressive MS

with progressionshowing evidence of worsening symptoms over a specific time period with or without a relapse possibly due to loss of axons (nerves)

Primary progressive MS Secondary progressive MS

without progressionwhere disability and symptoms are not getting worse over time

Primary progressive MS Secondary progressive MS

worsening disability has increased over time because of incomplete recovery from a relapse, possibly due to loss of axons (nerves)

Relapsing remitting MS

stabledisability is not increasing over time Relapsing remitting MS


Secondary progressive MS (SPMS):

“Initial relapsing remitting disease course followed by progression with or without occasional relapses, minor remissions, and plateaus.”

People with relapsing remitting MS often go on to develop a progressive form of the condition. Whilst the severity and frequency of relapses decrease or even stop altogether (here MS has changed from active to not active), the level of permanent disability increases over time (moving from worsening in relapsing remitting MS to being with progression in secondary progressive MS).

This can be explained because there are two underlying processes at work in MS:

• inflammation around nerves, which is associated with the relapsing remitting pattern

• destruction of nerve fibres, which is associated with progression.

Current thinking is that both processes occur early in the condition, though for most people inflammation is more prominent at first.

RRMS Transition fromRRMS to SPMS

SPMS

Not active Not activeNot active Not active

Not active

Stable StableWorsening

With progression

Withprogression

Withoutprogression

Activ

e

Activ

e

Activ

e

Activ

eActiv

e

Time

Dis

abilit

y

Change from relapsing remitting MS to Secondary progressive MS

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Inflammation

For reasons that are not yet understood, when someone has MS, cells in their immune system attack myelin – the layer of fatty protein that surrounds nerve fibres (axons) in the brain and spinal cord (central nervous system) – and the cells (oligodendrocytes) that make and maintain the myelin.

The attack on myelin causes inflammation around the nerves, which can be seen as white patches on an MRI scan. Once the inflammation is over, it is possible for damaged myelin to be replaced to some degree, a process known as remyelination.

This pattern of damage and repair is reflected in the relapsing remitting type of multiple sclerosis with which most (85 in 100) people are diagnosed. Inflammation is associated with attacks of symptoms (relapses) that come on quickly and last for more than 24 hours, though can persist for weeks or months. As the inflammation dies down, symptoms recover to some degree (remission). Although symptoms may not return to the same level as before the relapse and may fluctuate between better and worse days, the overall level of disability remains fairly constant between relapses.

Loss of nerves

Over time, the ability to repair damaged myelin is lost, leaving axons exposed and vulnerable. As axons carry nerve messages to surrounding nerves, if they are destroyed, the connections are broken.

The brain can reroute nerve signals past areas of damage to some degree, this is known as plasticity or neuroplasticity. However, continuing damage to axons leads to the gradual increase of symptoms seen in progressive MS.


For most people with relapsing remitting MS, the balance between inflammation and loss of axons changes slowly over time. As loss of nerve cells becomes more prominent, relapses happen less often and eventually stop, but disability gradually increases as axon loss continues. It is this change in balance from inflammation to axon loss that causes the transition from relapsing remitting MS to secondary progressive MS.

Age at onset

The longer someone has had relapsing remitting MS, the higher the chance of it changing to secondary progressive. Older studies suggest that about 20 years after the onset of MS, half of people diagnosed with the relapsing remitting form will have reached the transition to secondary progressive MS. Therefore, before the development of the disease modifying drugs, half of people diagnosed with relapsing remitting MS in their 30s would transition to having secondary progressive MS by their 50s or 60s. As the more effective disease modifying drugs are relatively new (less than 20 years old) their impact on rates of progression are still being studied.

nerve cellaxon

myelin

inflammation exposed axon

nerve cellaxon

myelin

inflammation exposed axon

Inflammation Loss of nerves

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It is possible, though much less common, for someone with relapsing remitting MS to transition more quickly to secondary progressive MS or for someone’s first diagnosis to be of secondary progressive MS. This would suggest that multiple sclerosis activity may have been taking place for several years before diagnosis but lesions may have been in areas of the central nervous system that didn’t lead to clinical symptoms, or symptoms had been put down to other causes or not been troublesome enough to lead to a diagnosis at the time.

For about 15 in 100 people with MS, the loss of nerve cells is the main process from the start of their condition. In this case they are diagnosed with a form of multiple sclerosis that is progressive from onset and is known as primary progressive MS.


Diagnosing secondary progressive MS

Identifying when multiple sclerosis has changed from a relapsing to a progressive course is not straightforward. The change between types is not a sudden switch but a gradual process where the relapsing and progressive patterns overlap for a while.

There is no test to show that someone’s MS is now secondary progressive. Diagnosis is often done by looking back at changes across the previous year or so. The neurologist has to decide if an ongoing, sustained increase in disability has occurred and that this is due to the underlying MS and not to other factors.

Things that can make the change hard to spot

• Relapses Recovery from a relapse is often not complete and the level of

disability might be higher once the relapse is over than it was before. However, so long as the level of disability remains stable between relapses, this is not considered to be MS progressing. For multiple sclerosis to be classed as secondary progressive, disability levels need to increase independently of any relapses that occur.

While the relapsing and progressive patterns overlap, people with secondary progressive MS can still experience relapses, although these tend to become less frequent.

People may also experience ‘pseudo relapses’ a temporary worsening of MS symptoms that may seem like a relapse but are actually caused by other factors.

• Fluctuation in symptoms MS symptoms do not stay constant, with some days better than

others. A run of bad days does not necessarily indicate that MS is progressing.

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• Other MS symptoms The worsening of symptoms may not be due to the underlying MS.

For instance, bladder or bowel symptoms can make spasticity feel worse. Similarly, symptoms such as pain, low mood and weakness can feel more pronounced during periods of fatigue. A proper assessment of symptoms to identify and treat any triggering factors can help to manage the effects.

• Non-MS factors Problems that are not part of MS, such as being under stress or

having an infection, can also make symptoms worse. Many people with MS find that heat can worsen symptoms. A smaller proportion find that cold weather can have a similar effect. When the trigger factor is removed or reduced, symptoms may improve.

Sustained progression

Having taken account of these factors, the neurologist will be looking for indications that an increase in disability has been sustained (MS with progression). To be certain that disability has permanently increased and that it is not a temporary worsening of symptoms (active MS), the neurologist will look for changes that have not improved for at least six months.

Not progressive Progressive

Although the level of disability might be higher after a relapse than it was before, MS is not considered to be progressive unless disability levels continue to increase independently of relapses.


The ability to walk shorter distances than before (increased difficulty with walking) is often the thing that leads people to realise that their symptoms have been gradually getting worse. However, it is not the case that secondary progression only starts when someone needs to use a walking aid or a wheelchair. Disability is not just about mobility. Progression may be indicated by increases in less visible symptoms such as bladder function, numbness or altered sensations, or symptoms associated with memory or thinking.

Although none of the symptoms of MS are unique to the different types of the condition, MRI scans of people with progressive MS tend to show more signs of damage in the areas at the back and base of the brain – the cerebellum and the brainstem – and in the spinal cord. Symptoms associated with these areas – impaired coordination, mobility problems, bladder and bowel symptoms and tremor – tend to be more pronounced.

People with secondary progressive MS are also more likely to show signs of damage and tissue loss in the centre of the brain in the areas associated with cognition (memory and thinking). Cognitive symptoms occur more frequently in secondary progressive MS than in other types of multiple sclerosis.

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How is secondary progressive MS diagnosed?Jeremy Chataway, consultant neurologist

Defining secondary progressive MS is certainly not an exact science from the clinical perspective. There is no test, such as an MRI scan, which can say that someone has moved from the relapsing remitting to the secondary progressive stage. In fact, we wouldn’t expect that, this is a gradual process.

In addition, there is often a reluctance to talk about progression, by both the doctor and the person with MS. Perhaps it conjures up feelings of failure and disappointment, of fear, and lack of treatment. Therefore, the discussion is often postponed or left hanging in the wind.

The general test I use is to ask someone how they were two years ago, for example, how far they could walk at a holiday destination or taking the children to school. If that has changed considerably, eg from 1.5km to 300m, then progression has taken place – they have moved from relapsing remitting to secondary progressive MS. It is important that other, non-MS conditions have been thought about and excluded if necessary, eg a prolapsed disc.

Once the point has been reached of formally defining secondary progressive MS, then I feel that a full re-evaluation of the situation is required. Aspects such as spasticity, urinary function, depression and fatigue may have been ignored in the relapsing remitting phase and now it is a chance to put them right.

In secondary progressive MS the chance of relapse is lower. It might be an opportunity to stop disease modifying drugs (and any side effects) and to explore other approaches to treatment. In one way it’s a new beginning and things might now be calmer as the ‘forest fire’ of relapsing inflammation dies down.


Managing the transitionSusan Hourihan, consultant occupational therapist

People with MS are often the first to be aware that their MS has changed but are not always sure what that means.

Despite awareness of change, it may still come as a shock to be told that their condition has been reclassified to secondary progressive multiple sclerosis. Some people have never heard of the term and others living with relapsing remitting MS had hoped or assumed that their MS would stay in that stage of the disease.

Commonly, people describe that when they are told they have secondary progressive MS, the information is given fairly casually and with little time for discussion. Yet the individual often describes this as a very significant moment, often as significant as the giving of the original diagnosis of MS. It brings up similar feelings as when first diagnosed and can sometimes be more upsetting if little is offered to help them.

However, so much can be done at this point to help people stay independent, manage symptoms and improve wellbeing. People at the transition from relapsing remitting to secondary progressive MS should speak to their MS nurse or other trusted healthcare professionals. If an MS multidisciplinary clinic is available, ask to be referred for an assessment. Alternatively, a review by a neurologist, MS nurse, physiotherapist and occupational therapist should be considered.

People may benefit from a review of their medications, mobility, every day activities including work and leisure, benefits and symptoms such as pain, bladder problems, spasms and mood. Specialist equipment for mobility or for the home or workplace may be beneficial.

Most people want good, safe information on their condition and psychological support. Everyone is different but an individual assessment at this time can be really valuable to help manage the condition and optimise independence.

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The transition to secondary progressive MS

Sometimes difficulty in identifying when secondary progression has started can lead to differences of opinion. The person who is living with MS may feel their MS is progressive. The neurologist, who is observing it in a clinical setting, may take a more cautious view and prefer to monitor symptoms over a longer period.

“I had already suspected that my MS was now secondary progressive.”

“I told my MS nurse that I thought it had changed, she referred me to the neurologist who agreed with me.”

The effect of words

It is not unusual for people to think that progressive MS will be worse than the relapsing type. The medical terminology is probably unhelpful in this regard. Relapsing remitting and secondary progressive simply describe the clinical nature of MS, not the experience of the person living with the condition. Individuals with either form will have better or worse experiences depending on the nature of their symptoms and the impact these have on their lives. The fact that one form follows the other does not necessarily mean that their MS has become worse.

“Progressive sounds worse, even though it’s only a word for what has been happening for a while.”

“People get hung up about the label of secondary progressive MS. No matter how you label your MS it is not going to make any difference to how you feel at this exact point in time.”

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Some neurologists may prefer to refer to ‘active’ or ‘less active’ MS as this better reflects the experiences of the individual regardless of their type of MS.

What the future holds

It’s not possible to predict how an individual’s MS will develop. Although progression does mean that disability will continue to increase over time, it does not mean that someone will inevitably experience a rapid decline in their health.

For many, the rate at which disability increases can be very gradual and is only apparent when symptoms are compared with previous years. The increase can also flatten out and people might find that their symptoms remain unchanged for a while and, in some cases, occasionally experience temporary periods of improvement.

Stopping disease modifying drugs

There are a number of drugs that have an effect on the underlying course of MS, rather than acting as treatments for symptoms. The fact that these disease modifying drugs are only licensed for treating relapsing MS can sometimes be a problem at this stage.

Some doctors may be reluctant to make a diagnosis of secondary progressive MS due to the lack of disease modifying drugs for this form.

Similarly, some people may be reluctant for their MS to be described as secondary progressive as this may lead to them becoming ineligible for the disease modifying drugs that they are currently taking. Even if the drugs seem to be having little or no effect, the thought of having to stop taking them can seem like another milestone that has been passed in the course of the condition and can be taken as a sign of failure or loss of hope.

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This is not the case. The term ‘disease modifying drugs’ may be misleading and might be taken to promise more than they actually offer. The role of the currently available drugs is to reduce the inflammation that causes relapses. None of them have been shown to have an effect on the increase in disability that occurs independently of relapses.

Given that the drugs are only effective for a particular type of MS, discussion about the fact that treatment may eventually need to stop at some point should take place when treatment is originally started. This may not happen in all cases. Even if it does, the implications of stopping treatment may be overlooked or forgotten, particularly if there is a long period of time when the drugs are still being effective.

Stopping treatment merely means that the limited actions of the disease modifying drugs are no longer relevant to what is happening with an individual’s MS. Treatment in progressive MS will focus more on managing the individual symptoms and on rehabilitation approaches.

“Stopping disease modifying drugs is not a cul de sac, just a bend in the road.”


The role of the MS nurseWendy Wilson, MS nurse

It can be a very difficult time for people when they are told that their MS has entered the secondary progressive phase. The realisation that MS isn’t going to go away is perhaps the time when some people need to emotionally readjust to living with a chronic illness, if necessary with the help and support from their MS team.

Anecdotally, a common experience described by some people to the MS team is that of feeling alone and abandoned. This may be partly due to people in the relapsing remitting phase of the disease being prescribed disease modifying drugs and being seen in an MS clinic on a frequent basis for monitoring purposes.

It is important to remember that the MS nurse can help to prevent these feelings. They can encourage people to say whether they would still like to be seen for a six monthly review between their annual appointments with their neurologist, and to reassess any issues or concerns they may have. The MS nurse may also suggest a referral to the local neurorehabilitation team, if there is one. Similarly the MS nurse is ideally positioned to know what facilities are available locally and can therefore signpost people to enable them to get the most from local health and social services.

It is vitally important to emphasise when someone is told they have secondary progressive MS not to give up hope and that they don’t have to deal with it on their own. Maintaining regular contact with the MS team can ensure people are kept informed of any promising treatment options available to them in the future and they can be reassured that they are not starting the next part of their MS journey on their own.

“The MS nurses are the true heroes in MS care, without my MS nurse I don’t know how I would have gotten to this stage, they have a profound effect on our rehabilitation and thinking on MS.”

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Coming to terms with the transition to secondary progressive MS

It is only natural to need a period of time to come to terms with the change in diagnosis from relapsing remitting MS to secondary progressive MS. It can often feel like a completely new diagnosis and many people liken it to a bereavement. Just like bereavement there are different stages to work through and there is no set time for working through this process, it will be different for everybody.

The first stage is the initial shock; feelings of numbness, relief, anger. The second stage is the process of mourning, the reality of the diagnosis and what it might mean begins to sink in. Often people feel low, irritable or angry at this time. They can become withdrawn from family and friends and can be prone to sudden outbursts of tears or to mood swings. Some people use this time to grieve for their former self. The final stage is when you begin to come to terms with the change in diagnosis and begin to see life in a more positive way again. Although you may always feel a sense of loss for your former self, you slowly and gradually learn to accept and live with the change in your MS.

There can be some overlap between these different stages and you may find you move from one stage onto the next and then back again. Undoubtedly some days will seem worse than others, but only once you have gone through this process are you able to move on and begin the process of redefining yourself.

It is very important to remember that acceptance is not giving in or giving up. Resignation to a situation takes no effort, but adapting and accepting requires effort and work.

There are practical steps you can take that may help.

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Gaining psychological support Dr Sarah Gillanders, clinical neuropsychologist

The transition from relapsing remitting to secondary progressive MS is a stage of MS that many people find challenging. I have often met people who felt able to cope with the relapsing stage of the disease, but found the transition to secondary progressive MS much harder. The challenges vary, but often people feel scared, uninformed, powerless, vulnerable and generally overwhelmed.

It is worth remembering that there are others who manage this stage of the condition without such distress.

So what is it that helps some people adjust more easily than others and what can help the many people who find it difficult?

There are a number of ways of gaining psychological support when coping with secondary progressive MS.

• Speak to your MS nurse or GP about a referral to a counsellor or psychologist as talking therapies such as acceptance and commitment therapy can be very helpful.

• Get answers to your questions. If there are things you are unsure about then speak to an MS nurse or the MS Trust for more information. Once you are informed then you are in a better position to make decisions.

• Use the people around you. Supportive relationships with family members, friends and professionals are incredibly useful in helping you cope with the challenges of MS. It is easy to think that you will overwhelm someone if you tell them how you feel. More often than not, the people close to you will know when you are upset and feel relieved if you can open up about how you’re doing and what they can do to help.

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• You may prefer to talk through your concerns with people outside your family or circle of friends. There is a range of support groups available, offering the opportunity to share ideas and let off steam with people who have had similar experiences. Different people will prefer different types of groups. Some may like the sociable side of attending meetings and get-togethers. Others may prefer the distance and anonymity offered by online groups.

• Advance care planning: some people find it helpful to explore options, resources and services that are available in case more support is needed in the future. Not only does this mean your family and professionals know your thoughts, it can also make it less stressful should a crisis ever arise.

Acceptance and commitment therapy (ACT)

Acceptance and commitment therapy (ACT, said as one word), is a type of psychological therapy, similar to cognitive behavioural therapy (CBT) that can be very helpful. ACT encourages people to become more aware of their thoughts, feelings and beliefs and the helpful and unhelpful ways they respond. It tries to support people to become more aware of and in touch with what matters to them (being a loving partner, a caring parent, a fun grandparent, a committed friend, a challenging quiz master) and to help them find ways to do those things, even with MS.

“I don’t like MS, I don’t want to have MS but this is how it is. I can’t take my granddaughter to nursery like I used to but I am great at reading stories with her, and she loves talking to me about Disney princesses. I used to think that I wasn’t a good grandma because I couldn’t do the physical stuff. Now I know that I can do plenty of things that my granddaughter loves and we are very close.”

Another useful tip is to notice when you are responding in an unhelpful way; pause and decide whether you want to continue like that or do something that is helpful to you.


The following are examples of ACT exercises that you could find helpful.

ACT exercises – Feelings What are some of the thoughts, feelings and beliefs you have about secondary progressive MS? What is it that is playing on your mind?

• Do you have thoughts of ‘why me?’, ‘this is not fair’, ‘my body is failing’, ‘I am no longer the person I was’, ‘MS has robbed me of so much’?

• Do you feel scared, angry, lost, frustrated, alone, vulnerable, judged?

• Do you have beliefs such as ‘the future is bleak’, ‘I couldn’t cope if this got any worse’?

Exercise: write some of these concerns on paper.

ACT exercises – How do you respond? When the thoughts, feelings and beliefs you wrote down pop up or are playing on your mind, do you:

• Shout, lash out or make rude remarks?

• Become short tempered or tearful?

• Withdraw from others and perhaps miss appointments?

• Manage to tell someone how you feel, get some fresh air, listen to music, make a cup of tea, go out with a friend or go shopping?

Exercise: write down all the ways you respond when you feel upset.

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What are the consequences of your responses?Looking at the list above, which ones are helpful and which are unhelpful? If you struggled to think of any helpful responses then take a moment to think about what might help you. How can you look after yourself when you are finding things difficult?

Exercise: make a list of helpful and unhelpful responses.

ACT exercises – What next… Now that you have a clearer idea of the helpful and unhelpful ways you try to deal with the stress of the transition to secondary progressive MS, how can you do more of the helpful responses? What are some of the barriers that make it difficult?

“I can’t talk to my partner about this; they have enough on their plate.”

“I would like to get more fresh air but I tire too quickly to go to the park.”

“I struggle to make tea now that my arms are weak.”

Exercise: what makes it difficult to respond in a helpful way to your distress?

ACT exercises – What can we do about the barriers?There are often challenges to doing what is good for us. The key is to try to stay focused on what we want to do, even when these barriers are in our way.

“I inevitably have ‘why me?’ days, but I try to stay positive and get on with living life.”


Taking the first barrier above, does your partner have so much on their plate that they can’t talk to you about your secondary progressive MS? If it’s important to you to have a close and supportive relationship with your partner, and you value the support you can give one another, then perhaps it is worth trying to open up a little more, even if that is hard to do. You might start a conversation like that by saying that you’re scared of overwhelming them as it feels overwhelming to you at times, but you value the support you can give each other and want to try talking a bit more. On the other hand, if you can’t get that support from your partner, are there friends or other family members who can be that source of support?

If the barriers relate to mobility problems, then is it possible to do things differently? Perhaps you used to go to the park, but if it is fresh air that you like then is it possible to sit in the garden or outside the front of your house instead? It’s not how it used to be but you still get to do some of the things that are important to you and that you enjoy.

If it is making tea that is difficult then is it possible for someone to make you one in a warm travel mug so even if there is a time when you are alone, there is still a warm cup available or can you get a tipping jug to use to keep your independence.

Exercise: take a look at each of your barriers and think about how you can do more of what’s helpful for you.

Positive thoughts on secondary progressive MS

For some people, the change to secondary progressive can have positive aspects. For many, progression is very gradual and only perceptible when looking back over a long period of time. The reduction in, or absence of, relapses that might come on unexpectedly can make planning life a little easier.

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“I am relatively calm about my future as at least I don’t have to worry about relapses.”

“Not having relapses means my MS has less of an unpredictable impact on my working life.”

“As my symptoms are very gradual, it’s only through seeing people I haven’t seen for a while that I realise my MS has progressed. I just get on with the symptoms but generally can’t tell what’s changed.”

Depending on the nature of symptoms, stopping disease modifying drugs and the regular need to inject oneself can also be seen positively.

“The positive thing is that I don’t have to have that regular injection together with its unpleasant side effects.”

For some, the diagnosis of secondary progressive allows them to reflect on their lives. MS may alter the opportunities that may be open to someone, but it can also help them focus on what is important and valuable. Depending on circumstances this might mean a change in career, taking up a new activity or encouraging someone to live for the moment.

“I try to keep fit and concentrate on my body more by strengthening muscles with Pilates and swimming. Both giving me more confidence.”

“My life is based very much on what I can do, rather than what I cannot.”

“There is a line from a Western which is corny but sums it up well – ‘Play the cards life deals you.’ Nothing I can do about it so I just get on with life.”


Managing secondary progressive MS

The services and support needed when MS becomes secondary progressive may change and can involve a wider range of health and social care services than someone saw when they had relapsing remitting MS. Sometimes the links between these services may seem less coordinated than previously. With less regular contact with an MS team, people may feel less able to raise concerns or ask about approaches to problems.

The management of secondary progressive MS focuses on the following three key areas:

• symptom management – this may either be drug treatment, rehabilitation, or a combination of the two

• prevention of complications

• promoting general health and wellbeing to attain the best quality of life possible.

There are currently no disease modifying drugs licensed in the UK that can alter the course of secondary progressive MS although there are a number of trials that are showing promise.

The symptomatic treatments and rehabilitation strategies used in secondary progressive MS are the same as for other forms of MS. A multidisciplinary team of specialist health professionals may be involved in your treatment, these might include:

• GP – can help management of some symptoms, GPs also have a role in referring individuals to, and liaising with, other members of the specialist team

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• neurologist – makes the diagnosis of MS and determines what medical treatment and rehabilitation may be appropriate

• consultant in rehabilitation medicine – works with therapists and nurses to provide medical advice and coordinate rehabilitation services for individuals with a combination of symptoms and disabilities

• MS specialist nurse – often the first point of contact for discussing any clinical issues, they also have a role in referring to other members of the specialist team to ensure continuity of care and liaising with the GP and primary care team – a group of health professionals that are usually based in a GP surgery or health centre, includes practice nurses and district nurses

• rehabilitation nurse – has a similar role to an MS specialist nurse, but is affiliated with a consultant in rehabilitation medicine rather than a neurologist

• physiotherapist – involved in the assessment of movement to help improve mobility and may have a role in the management of symptoms such as pain and spasticity. They can also provide advice on exercise

• occupational therapist (OT) – involved in assessing a person’s ability to perform daily activities. They have a role in teaching fatigue management strategies and can provide aids or adaptations if they are needed

• continence advisor – specialises in managing bladder and bowel problems

• speech and language therapist (SLT) – involved in assessing problems with speech and swallowing

• dietitian – assesses a person’s nutritional needs and provides advice on managing diet, particularly if symptoms have resulted in substantial weight loss or gain, or feeding has become difficult


• psychologist – involved in assessing psychological and emotional problems.

NICE guidelines recommend that someone with MS sees a specialist health professional in MS, such as a neurologist or MS nurse, at least once a year to review their symptoms and the care and treatments they are receiving.

Drug treatment

Studies are ongoing to determine whether any of the disease modifying drugs that are used in other forms of MS are effective in secondary progressive MS, with several showing promise. Currently the majority of secondary progressive MS drug treatments are aimed at alleviating the symptoms of MS as best as possible to enable individuals to carry out normal day to day living.

It is impossible to mention all of the different drugs for all of the different symptoms in this book, but listed below are some of the drugs that are most widely prescribed. Some treatments are only available in specialist centres and not all are licensed for use in MS, but they may be prescribed off-licence at the discretion of the doctor/neurologist in some circumstances. GPs can be reluctant to prescribe some treatments unless they have been specifically recommended by a neurologist.

• Spasticity and spasms: baclofen, gabapentin, tizanidine, diazepam, clonazepam, dantrolene, carbamazepine, intramuscular botulinum toxin, intrathecal baclofen, intrathecal phenol, Sativex (limited availability on the NHS in the UK)

• Bladder problems: oxybutinin, tolterodine, desmopressin, botulinum toxin

• Bowel problems: docusate, lactulose, macrogol, bisocodyl, loperamide

• Sexual difficulties: sildenafil, vardenafil, tadalafil

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• Fatigue: amantadine

• Pain and sensory symptoms: amitriptyline, pregabalin, imipramine, nortriptyline, carbamazepine, gabapentin

• Depression: fluoxetine, citalopram, sertraline, amitriptyline, imipramine, duloxetine, phenelzine sulphate

• Mobility: fampridine (limited availability on the NHS in the UK).

For some people tolerating the side effects of some of these medications, which can include nausea, sleepiness, weakness, or diarrhoea, can be a problem in itself.

There are some symptoms of secondary progressive MS for which there are no specific drug treatments, but these symptoms may benefit from therapy. For example, speech problems and weakness can be treated through speech and language therapy and physiotherapy. For some symptoms drugs may be of only limited benefit – for example fatigue – so they may not be tried until other avenues have been explored, such as a fatigue management course. Sometimes a drug aimed at another symptom or condition can be prescribed to give some symptom relief. For example, anticonvulsant drugs (used in epilepsy) and antidepressants are often used to treat nerve pain in MS as one of their effects is to alter the chemical transmission of pain thereby reducing symptoms.

Steroids and secondary progressive MS

Steroids are sometimes used in relapsing remitting MS to speed up recovery during a relapse. It is unclear how they work but they are thought to act by suppressing the immune system and/or reducing fluid accumulation around the sites of nerve damage. Sometimes a one-off course may be given in secondary progressive MS if a person begins to experience a period of deterioration, particularly if their movement is predominantly affected.


In most cases it is generally accepted that steroids do not usually have a role in secondary progressive MS so they are rarely used. This is because in some cases they can in fact make things worse. There have been some reports of a sudden deterioration after the use of intravenous steroids in some cases of advanced progressive MS. There is also no evidence that steroids can alter the long-term course of secondary progressive MS.

Self-management

Adopting a self-management approach can be helpful. This recognises the expertise that someone with MS has in how their condition affects them and how this can be used in partnership with health and care professionals. Rather than being a passive recipient of care waiting to be told what will happen, self-management is a proactive approach – raising concerns about symptoms, making informed decisions about treatment or other issues that need addressing and asking what services are available.

“Pick up on your symptoms early and ask early for help.”

“Don’t be scared to ask your doctor questions you may have, they’re only human.”

MS nurses

In many situations, the first point of contact might be an MS nurse, though it could be a supportive GP, a physiotherapist, occupational therapist or another health professional who is willing to help find the services that are needed. In some areas, people with a diagnosis of MS can contact the MS nurse directly without need for a referral. In others it may be necessary to ask a GP for a referral to the local service. Initial contact will probably involve leaving a message on an answerphone. The nurse will reply, but it may not be on the same day.

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“It is reassuring to have specialist people within my area available to call on when needed. I find it very difficult to ask for any assistance/help but knowing I can use them when needed reduces the stresses and anxieties of living with MS.”

People with progressive MS can sometimes feel that they have dropped off the radar of MS services. There are a variety of reasons why people may not have the same level of contact with their neurologist or nurse:

• the symptoms of progressive MS tend to increase gradually rather than appear or increase suddenly as happens with a relapse. People may feel more reluctant to make contact about an ongoing symptom than one that has suddenly flared up

• follow up meetings about disease modifying drugs may be stopped and alternative appointments not put in place

• as there are no equivalent disease modifying drugs for progressive MS, people may wrongly feel that nothing can be done for this form of the condition and so don’t think to contact a neurologist or nurse about treatment for individual symptoms.

“I could self-refer but was apprehensive about doing so at first so needed to be approached by professionals.”

Support from specialist health services Alison Smith, rehabilitation nurse

With symptoms changing gradually over time many people continually adapt without realising it. These adaptations are generally helpful but sometimes they aren’t the best way to cope and may cause problems in the future (such as hip hitching causing back pain). At this time it is useful to have regular check-ups, a bit like a yearly MOT. This can be done by a neurologist or an MS nurse but some people find a rehabilitation medicine consultant or rehabilitation nurse suits the job better.


Other MS Trust resources Map of MS nurses and other services – www.mstrust.org.uk/map

RehabilitationThe aim of rehabilitation medicine is to use all means available to help an individual to live their life as fully as possible, minimising the impact of physical, psychological or social complications. Rehabilitation is something that should accompany medical treatment, rather than being thought of as a last resort. Ideally rehabilitation management should be an ongoing rather than an episodic process, although there may be periods of intense therapy. Unfortunately, it can be difficult to access rehabilitation therapies on the NHS, particularly on an ongoing basis. In an ideal world everyone would have regular access to physiotherapy, but in reality a course of physiotherapy is typically for a fixed number of weeks and you may be limited to the number of courses you can access in a year. There can be an element of self-management in between treatment episodes, in terms of maintaining the motivation to carry on doing exercises suggested by a physiotherapist at home, or finding other resources that may be available to you, for example a local exercise class.

There is a huge range of possible therapy interventions. They are generally grounded in a person’s desire to continue to live their life in a certain way, or participate in a given activity, aiming for a clear goal. Optimum use of medication can be enhanced by positive lifestyle changes, psychological support if it is required and the coordination of specific therapies to meet individual needs.

“[It is] eight to nine years since I felt my first symptoms, I am still on my feet thanks to a regime of exercise and medication.”

Like other treatments for MS, rehabilitation is not curative, but it can help an individual discover abilities they didn’t realise they still had.

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It can help make the best of, and maintain, functions in order to manage symptoms, promote independence and above all maintain individual choice whatever the level of disability – therefore it is vital to ask for help sooner rather than later. A wide variety of strategies and therapies may be employed to help a person find new ways to do things that have started to become difficult.

Some people with secondary progressive MS will have access to a consultant in rehabilitation medicine and their team, whilst others will access services through their GP, neurologist or MS specialist nurse. Below are some of the rehabilitation therapies that may be used to help manage MS symptoms.

Physiotherapyhis is probably the most widely recognised of the rehabilitation therapies. A physiotherapist can carry out an assessment and design individual stretching and exercise programmes to help with a variety of symptoms such as mobility problems, spasticity and spasms, weakness, tremor, balance problems and dizziness. They can also teach relatives or carers to support a physiotherapy programme.

“I think physiotherapists are essential for people with secondary progressive MS. It is good to be assessed on a regular basis and have a clear programme of exercises which can be rearranged to suit fluctuating needs.”

Occupational therapyOccupational therapy aims to make day to day living more manageable. It can involve finding ways to save energy and minimise fatigue. Equipment may be provided to help with daily activities, for example grab rails in the bathroom, perching stools to enable sitting whilst preparing food, or specialist cutlery to assist with eating. An occupational therapist will also be involved in assessing for mobility equipment such as sticks, crutches, walkers and wheelchairs if required. An occupational therapist may also be able to assess an individual’s workplace and develop strategies to help maintain, or facilitate a return to, employment.


Clinical psychology A clinical psychologist approaches the psychological and emotional problems associated with MS. This may include help with cognitive symptoms, low mood or depression. A psychologist may use approaches such as cognitive behavioural therapy (CBT) or acceptance and commitment therapy (ACT) to help people approach life with MS more positively.

Speech and language therapyFor those with difficulties with speaking, a speech and language therapist can assess the problem and devise exercises to strengthen and improve the muscles involved in speech and breathing. They can also advise on aids for communication. If swallowing difficulties are encountered, a speech and language therapist can suggest ways to minimise or avoid problems.

Nutritional therapy A dietitian may be involved if there are nutritional problems, for example if a person has lost or gained a significant amount of weight. Changes in weight may be due to mobility issues, loss of appetite, or feeding or food preparation difficulties. They can also give advice on different food textures and alternative methods of feeding if swallowing becomes difficult.

Other MS Trust resources Map of MS physiotherapists, OTs and rehabilitation services – www.mstrust.org.uk/map

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How the multidisciplinary team might work together towards a clear goal is demonstrated by the following example:

An individual wants to go to their daughter’s wedding, but has problems with spasms as well as bladder and bowel issues. The neurologist or consultant in rehabilitation medicine might advise on controlling the spasms, a community physiotherapist might help the individual find better ways of getting in and out of a car, a specialist nurse or continence advisor could work with them on timing and management of their bladder and bowels, and one or more of the rehabilitation team could be involved in helping the person and their family develop more confidence.

Prevention of complications Some of the symptoms of MS can make you more prone to complications which can worsen pre-existing symptoms or trigger new ones. The specialist knowledge of MS nurses, consultants in rehabilitation medicine and district nurses is particularly important in anticipating and preventing complications in progressive conditions.

Bladder infections can be particularly problematic in MS. For those who use catheters it is important that a good, clean technique is taught and followed to reduce the risk of infection.

In advanced secondary progressive MS, maintaining the integrity of the skin is an important aspect of self-care. Otherwise what starts as a minor skin irritation could result in a pressure sore. Keeping the skin as clean as possible and well moisturised, and ensuring individuals keep moving regularly by repositioning themselves if they are in a wheelchair or in bed on a regular basis, will minimise the risk of pressure sores forming.

It is important to remember that not all the symptoms you experience are necessarily connected to your MS. If you experience anything unusual you should still see the appropriate health professional.


Rehabilitation in secondary progressive MSAlison Smith, rehabilitation nurse

A long time ago I met a lady with secondary progressive MS in a Young Disabled unit. She wasn’t engaging in the rehab process as it was then being practised. New to the territory, I asked her why she didn’t want to participate in ‘washing and dressing’ practice. She told me she had fatigue and if she did her own personal care she was good for little else for many hours. She said that anyone could dress her but only she could read a book, go to the theatre or spend time with friends and family. So she ensured that all of her energy was spent doing things that were important to her and her loved ones.

I have never forgotten that conversation. Long before it was integrated into routine practice, she encompassed the goal-directed principles of rehabilitation that we use now.

Rehabilitation is not just therapy, although therapy is part of rehabilitation.

In relapsing remitting MS, medication and therapy are the drivers of treatment. In secondary progressive MS, if a rehabilitation approach is taken, the individual can become the driver of the treatment. Fully informed in symptom management (medication, therapy and adaptive techniques/equipment) and supported by a rehabilitation practitioner, a goal-based, lifestyle-centred approach can be taken.

People new to rehabilitation often ask me what they can do to manage their MS if they aren’t receiving a disease modifying drug and they just appear to be getting worse. I suggest the above approach because biological, psychological and sociological wellbeing is a successful route to managing the impact MS has on a person’s life and life choices.

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Research into secondary progressive MS

Collaboration in research

Historically, progressive MS has been studied less than relapsing remitting MS. However, the situation has slowly begun to improve in the last decade. In 2012, the Progressive MS Alliance was formed (previously known as the International Progressive MS Collaborative). This is a global research initiative, involving the collaboration of organisations from around the world, who are working together to find answers that will lead to new treatments and ultimately, end progressive MS.

“Focusing on primary and secondary MS is probably the greatest need in the MS community.” Prof Alan Thompson

“It is simply a matter of time before breakthroughs in progressive MS occur. If we keep investing in research the breakthroughs will happen.” Prof Gavin Giovannoni

In 2013, over 170 MS researchers, clinicians and industrial partners gathered to discuss challenges and strategies to accelerate innovative research focused on progressive MS. Five key areas of research were identified:

• developing better experimental models for progressive MS

• identifying outcome measures to be used in trials that are better able to show the effects treatments are having on progression

• identifying new, or existing drugs currently used for other conditions, that could be effective therapies for progressive MS

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• clinical trial strategies that give an early indication whether an intervention will be effective (known as proof-of-concept)

• symptom management and rehabilitation.

Following a further meeting in 2013, the Alliance announced two funding initiatives and put out a request for research proposals. 20 projects were selected and funded in early 2014 with a further three projects selected and funded in 2016.

Future research priorities

Why disease modifying drugs for relapsing remitting MS are less effective in secondary progressive MS The change from relapsing remitting to secondary progressive MS reflects a change in the underlying disease activity in the central nervous system.

Relapses in multiple sclerosis are associated with patches of inflammation around nerves in the brain and spine. Several ways have been found to reduce or prevent some of this inflammation, which has led to the development of the disease modifying drugs.

When MS becomes progressive, inflammation becomes less prominent and the main disease activity is the destruction of the myelin layer that surrounds nerves and of nerve fibres themselves. What causes this process and how it can be altered is less well understood. Drugs that reduce inflammation are no longer as helpful and new approaches are needed.

As well as trying to better understand why progression happens, research is looking for ways to reduce the rate of progression by protecting the nerves (neuroprotection) or by finding ways to repair damage that has occurred (stem cells may have a role in this).

More information on the Progressive MS Alliance can be found at www.progressivemsalliance.org

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Neuroprotection

Damage caused by MS can lead to increases in levels of nitric oxide, calcium and sodium around nerves. Contact with high levels of these chemicals can damage or destroy nerve cells, leading to the persistent symptoms of progressive multiple sclerosis.

Similarly, glutamate is one of the chemicals involved in transmitting messages from nerve cell to nerve cell. However, excessive glutamate can also damage nerves.

The loss of nerve cells can be measured through changes in brain volume, which is known as atrophy. As cells are lost, the brain becomes smaller.

The theory of neuroprotection is that, if the nerve cells can be protected from these chemicals, destruction – and thus further permanent problems – can be lessened or perhaps prevented.

Several studies have looked at possible neuroprotective drugs, though there have only been small studies in humans. Drugs that have shown potential will need to be studied in larger trials before treatments can be made available for people with MS.

Neuroprotective treatments will not be able to reverse progression or restore function that has already been lost. However, if suitable drugs can be developed, it is hoped that this will mean that further progression of MS can be significantly slowed down.

Repairing and replacing myelin

Whilst drugs that alter the action of the immune system or that protect nerves may help to limit the build-up of damage, neither will reverse the progressive effects of multiple sclerosis. Finding ways to repair or replace areas of damage, and thus allow people to recover ability that has been lost, is another important area of MS research.


Stem cellsStem cells are cells that can develop, or differentiate, into any of the cells of the body. Stem cells are the first cells to grow in the embryo and allow it to develop the specialised functions and mechanisms that occur in the human body. Stem cells also occur in adults and are used by the body to replace areas of damage.

Stem cells may potentially be used to treat MS in different ways by:

• developing into nerve cells to repair damage in the brain or spine

• developing into oligodendrocytes, the cells that create and repair the myelin around nerves

• boosting the immune system to prevent further damage occurring.

Work is also looking at how best to deliver stem cells so that they go to the appropriate places to carry out repair and at ways to ensure that transplanted stem cells do not harm the recipient or grow into unwanted tissue.

If processes can be developed, it opens the possibility that cells destroyed by MS might be replaced and disabilities caused by the loss of nerve pathways reversed.

Stem cell treatment has been demonstrated for experimental forms of MS. Pilot studies in humans – so far looking principally at safety – have started in the UK and have shown some success in early, very active forms of MS and is now available for a small number of people on the NHS.

Accelerating the growth of myelinIt is known that in the earlier stages of MS the body can to some degree replace lost myelin. If the affected area is no longer being attacked by the immune system, new myelin can be formed around nerve cells.

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Research has looked at the body’s own ability to replace damaged myelin and has identified proteins that may enhance this. Work to develop treatments that might encourage and enhance this process is still in very early stages and an approach that can be studied in humans is still some years away.

Trials of disease modifying drugs

Trials of licensed disease modifying drugs in secondary progressive MSThere have been trials where several of the disease modifying drugs used in relapsing remitting MS are given to people with secondary progressive MS. These drugs include interferon beta 1a, interferon beta 1b, glatiramer acetate, mitoxantrone and riluzole. The majority of these drugs are designed to inhibit the inflammation that is thought to cause damage to the myelin of the nerves. Because inflammation becomes less of a feature in secondary progressive MS, these drugs are of less relevance and have generally been shown not to be effective. The trials have been justified because although there is less inflammation seen than in the relapsing remitting form of MS, there is still some inflammation present in secondary progressive MS.

Trials of potential disease modifying drugs and therapies in secondary progressive MSSome of the drugs that have been studied for their effect on protecting nerves from further damage (neuroprotection) are:

• Lamotrigine (Lamictal) – studied in 124 people with secondary progressive MS but found to be no more effective than placebo.

• Safinamide – showed a neuroprotective effect in animal studies.

• Flecainide (Tambocor) – showed a neuroprotective effect in animal studies.

• Eliprodil – produced some degree of nerve fibre protection in laboratory based models.


• Cannabis – the CUPID study involved 493 people with progressive MS taking a cannabis based pill. Results found it to be no more effective than placebo.

• Phenytoin (Epanutin) – the neuroprotective effect of this antiepileptic drug was explored in a study involving 90 people that was completed in 2014. It showed a protective effect towards the optic nerve in cases of acute optic neuritis.

A number of small studies have looked at the neuroprotective properties of adrenocorticotropic hormone, erythropoietin, Lithium, MIIS416, sunphenon, statins, lipoic acid, amiloride, fluoxetine, riluzole, domperidone and siponimod, each of which have shown potential for slowing progression. They are therefore being taken forward in larger trials in secondary progressive MS.

• Simvastatin is a drug used to lower cholesterol. The MS-STAT trial involved 70 people with secondary progressive MS taking a high dose of this drug and 70 taking a placebo. Those on simvastatin showed reduced loss of brain volume, slowed change in EDSS, and improved scores on the MSIS-29, a measure of the extent to which MS affects daily life. A larger trial, named MS-STAT2, is starting in 2017.

• Siponimod is a similar drug to fingolimod and is being explored as a treatment for secondary progressive MS. A study in more than 1,000 people showed that it could delay progression by at least three months, therefore an ongoing trial is assessing the extent of this effect. The trial is due to complete in 2023.

• MS-SMART is a trial looking at three drugs – fluoxetine, riluzole and amiloride – that have shown some signs of promise in progressive MS. This involves 440 people with secondary progressive MS and is due to complete in 2018.

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• Biotin is a water soluble vitamin (B7) that activates enzymes involved in cellular energy production and myelin formation. A small study found that high doses of biotin in patients with primary and secondary progressive MS had an impact on disease progression in those with optic neuropathy, visual field loss, and spinal cord involvement. Early results of a larger trial of high dose biotin in progressive MS have shown improvement in MS-related disability outcomes with the full results expected in September 2019.

• Lipoic acid is a naturally occurring antioxidant has been shown to reduce brain atrophy in a small study with 69 people. A larger trial is starting in 2017.

• Masitinib is a drug that targets mast cells, which are involved in allergy and inflammation, reducing the immune response and inflammation. In a small study of the drug in primary progressive MS, participants showed an improvement on the Multiple Sclerosis Functional Composite score (MSFC). The MSFC assesses walking ability, hand and arm coordination, and mental function. Although improvements were seen, they were not statistically significant, and a larger study is now under way to see if the results can be replicated. The study is expected to fully complete in July 2019.

Other MS Trust resourcesNew research in MS means that things can change quickly. For the most up-to-date information visit our website where we post regular updates on the latest research papers in MS. www.mstrust.org.uk/research


Tips for coping with secondary progressive MS

Here are some ideas and tips submitted by people living with secondary progressive MS.

“Keeping a sense of humour is very important. Don’t forget how to laugh!”

“A good support network of health professionals, friends, family and charity groups helps.”

“Keep a card to hand with the name and contact details of your MS nurse, your neurologist, support groups, MS charities, etc.”

“If face-to-face meetings are confusing, having what you want to say written down helps.”

“Ask for copies of the letters sent to your GP, either from the surgery or the hospital, so you know what they are saying about you.”

“If you think something might help you then ask for it – loudly!”

“Take part in research studies – these in themselves can be therapeutic and may give you a boost of wellbeing because you are helping others.”

“Get to know all you can about your illness – information is power.”

“There is a lot of information to be had. I just try to take in a little bit at a time.”

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“Talking to others with MS and going to online chatrooms has helped enormously.”

“Ask people for help, eg, carrying things, asking for lifts etc. Most people are pleased to do so.”

“People often don’t realise your difficulty as you might look ‘normal’ even if you cannot walk very far or are afraid of falling over.”

“Raise the profile of secondary progressive MS.”

“Keep doing things – I never thought I could horse-ride or splash about in a hydrotherapy pool and I might even learn to swim again.”

“Take up a new hobby that you can do sitting down – art classes, playing an instrument etc.”

“Keep up with friends and say ‘yes’ to invitations even if you think you can’t possibly manage – you usually can with a bit of help.”

“Keep an open mind – be prepared to talk openly and frankly about how you are feeling.”

“Be honest because you are the best person to describe your feelings. You will have down days when symptoms may make you depressed. Share your feelings and treat it as another dropped stitch in life’s rich tapestry.”

“A positive mental attitude is essential to survival and coping with everyday living with MS.”

“Try not to let MS take over your life completely.”

“Never give up hope, think about what you can do to manage and not let MS manage you.”


Living with secondary progressive MS

Living well – health awareness, activity, diet

The physical and psychological effects of living with MS can sometimes mean that looking after your basic health is overlooked or becomes more challenging to achieve. Fatigue, reduced mobility or continence problems can make someone become less active or follow a diet based more on convenience of preparation than nutritional value.

It is important for individuals to make the most of both their physical and emotional wellbeing to enable them to live life to the fullest and do the things they enjoy as well as the things they have to do.

Trying to stay as healthy as possible can put people in the best position to deal with the challenges presented by their MS.

Health awarenessIt is very easy for both the person with MS and their health professionals to assume that all health issues are in some way related to multiple sclerosis. This is, of course, not the case. People with MS are at risk from the same health problems as the general population and it is important to have any relevant health, dental or optical checks and to raise concerns with your GP.

Sometimes the effects of MS can make getting to check-ups more difficult, though this should not be used as a reason why they don’t take place. Sometimes adaptations to the equipment may be needed – for instance, for a wheelchair user attending breast screening, or someone with swallowing difficulties receiving dental work. When the check-ups are being booked, make sure that people are aware of potential barriers and requirements.

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Healthy lifestyleGeneral healthy lifestyle advice also applies to people with MS and may have added advantages for people with the condition.

Other MS Trust resources Living well with MS – www.mstrust.org.uk/living-well-ms

Staying activeExercise has been shown to have a range of benefits for people with MS. As well as improving general fitness, exercise can help to reduce fatigue and improve strength, mobility, bowel and bladder function. It can also help improve mood and sense of wellbeing.

The idea of ‘exercise’ can be off putting for some, but any activity that involves physical movement with even a slight increase in effort – such as gardening, housework or shopping – can be beneficial.

“I find it much easier to disguise it as something fun that happens to keep me active rather than just ‘doing exercise’.’’

Symptoms such as stiffness, weakness and poor balance can benefit from exercise and a physiotherapist can help develop a suitable, tailored programme.

If fatigue or sensitivity to heat are issues, take things gently and be aware of when to rest and when to pace activities. Otherwise, there are no hard and fast rules about what exercises someone should do. Find something you enjoy doing, whether on your own or in a group, and build up gradually.

Healthy eatingAlthough no specific approach is scientifically proven to be beneficial for people with MS, having a healthy diet has been shown to help, especially with managing symptoms.


A diet low in saturated fat with plenty of fruit and vegetables is proven to be good for general health so do some experimenting to see what agrees with you and what helps to make you feel better.

A healthy, well-balanced diet and plenty of fluids provides optimum energy levels, helps to control weight and reduces the risk of cardiovascular disease.

SmokingThe health risks associated with smoking are well known, but research has shown that giving up can have particular benefits for people with MS. People who gave up cigarettes following their diagnosis with MS experienced slower progression of disability than people who continued to smoke.

Complementary medicineResearch studies suggest that up to half of people with MS regularly use at least one complementary therapy approach to help with their condition. As well as any direct therapeutic benefits, exploring different approaches can also offer a feeling of regaining some sense of control, even if particular therapies that are tried prove not to be helpful.

There is a wide range of therapies that people might consider from acupuncture and aromatherapy to mindfulness and yoga. If a particular therapy sounds interesting, where possible, consult a practitioner who has been recommended by a trustworthy source – a friend, doctor, etc. So long as there are no safety issues and the cost is reasonable, be your own judge as to whether the approach is helping. If you feel benefit, then keep on going. If the approach does nothing for you, mark it down to experience and perhaps try something else.

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Mindfulness for health Mindfulness is an increasingly popular and effective way to help people relate to their thoughts and emotions in a different way. Mindfulness teaches us to make peace with our thoughts and emotions rather than to try to change them or ignore them. Research findings show that mindfulness courses reduce stress, depression and anxiety and increase heath-related quality of life in people with a range of medical conditions including MS. www.mstrust.org.uk/a-z/mindfulness

Work

For many people, working provides more than just a regular pay packet. Being at work can give structure to the week, be a source of social interaction and be bound up with someone’s feelings of wellbeing and self-worth. Work can be good for health.

People with MS are covered by the Equality Act, which protects anyone with multiple sclerosis from discrimination in the workplace and requires employers to explore reasonable adjustments that could be made to help someone stay in work. Despite this, research shows that many people with MS find that their condition has an impact on their working life and leave employment early.

Before making any decision, it is worth exploring the implications – financial, social and the effect on your family – and what support might be available to help you with these choices.

Welfare benefits

For many, the change to secondary progressive MS is a point when they might start to look for information on what help is available or find that their eligibility for benefits has changed.


Benefits fall into three categories:

• Those related to low income – such as Housing Benefit, Council Tax Benefit or Income Support. Some of these benefits will be combined in the new Universal Credit which is currently being introduced.

• Those related to employment – such as Jobseeker’s Allowance or Employment and Support Allowance (ESA). Some of these benefits will also become part of the Universal Credit.

• Those related to the extra costs of living with a long-term condition – such as Personal Independence Payments (PIP), which have replaced Disability Living Allowance (DLA) for new claimants. People under 65 on 8 April 2013 have been moved to PIP.

Navigating the benefit system can be challenging and the chances of making successful claims are improved by talking to organisations with expertise in guiding people through the process.

Citizens Advice offers free advice, though this may need to be at one of the larger centres rather than community offices. Their Advice Guide website includes a section on identifying and claiming benefits – www.adviceguide.org.uk

Some MS Society branches have a welfare officer or local support officer who can help people with MS claim the benefits to which they are entitled – www.mssociety.org.uk/near-me

Gov.uk, the government information website, has links to benefits calculators to help you find out which benefits you may be entitled to – www.gov.uk/browse/disabilities

In some areas there are local groups that can help people find their way through the benefit system.

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Maintaining social relationships

Contact with other people is an important aspect of life. Aside from any direct support and help that people can offer, the sense of involvement and understanding, and a wider perspective on your own situation is central to wellbeing.

Sometimes the effects of MS make you feel less inclined to be sociable. Meeting people can be tiring or venues present practical problems, such as difficulty with access or knowing where to find toilets quickly.

“Can’t go out much, can’t be far from a toilet or from home generally, where everything is arranged to suit.”

“If I go out during the day it can’t be for longer than an hour or two, I just become too weary and uncomfortable.”

Sometimes people feel embarrassed by their own restrictions and will perhaps judge themselves more harshly than those around them.

“I hate the way MS affects me and I prefer others not to see its worsening effect.”

“I don’t like being seen in a wheelchair.”

Getting out of the habit of being sociable can also make going out become more of a chore.

“I have to force myself into action sometimes as it is so much easier to just stay at home.”

It’s important to remember that there is a poor understanding of MS amongst the general population. If people do know about MS, they may have incomplete knowledge or make false assumptions. Friends may be unaware of just how MS affects someone and not realise what an individual with MS can or can’t do.


As a person with MS, you play a key role in letting people know what the barriers and challenges are for you and how best to overcome them. Depending on symptoms, this could involve giving plenty of notice of get-togethers, being prepared for you to decline or pull out at the last minute, planning for easy access to toilets or choosing shorter routes for walks.

“If I go to a restaurant I usually go to one particular one which is familiar and where they now know me and my family.”

People are often willing to help in any way they can but need guidance on what is appropriate. Through not knowing what questions are appropriate, some people may avoid talking about MS entirely. Others may give full reign to their curiosity or become overpoweringly protective. It can be useful to develop strategies to deal with unwanted or intrusive questions.

“I don’t like going into situations with new people as they ask too many questions and some are very insensitive.”

Being sociable isn’t restricted to meeting people face to face. There are an increasing number of online groups on any topic imaginable and these may be an option for someone who has difficulties with mobility or who is reluctant to be seen as a person with a disability. Online, people are defined just by what they tell people.

“I get out less now but use the internet and the telephone to keep in touch with friends.”

Reflections on living with secondary progressive MS

It’s good to have something to aim for and then congratulate yourself on your achievements, big and small. You shouldn’t worry too much if you don’t manage to do everything exactly as you planned. It’s your life so be true to yourself and make the most of it.

55 telephone 0800 032 3839

More information

MS Trust Information Service

If you have specific questions on any aspect of MS, contact our Enquiry Service on 0800 032 3839 or [email protected]

MS Trust publications are free and can be ordered by calling 01462 476700 or by emailing [email protected]. All titles can be read or ordered online at www.mstrust.org.uk/pubs

Keep up to date with news about research and the world of MS by signing up for Open Door, the MS Trust’s free, quarterly newsletter, or our weekly email alerts. Call us on 01462 476700, email [email protected] or sign up online at www.mstrust.org.uk/in-touch

Other MS Trust publications you may find helpful Books • Are you sitting comfortably? A self-help guide to good

posture in sitting • Falls: managing the ups and downs of MS • Living with fatigue • Managing your bladder: a guide for people with MS • Managing your bowels: a guide for people with MS • MS and me: a self-management guide to living with MS

Exercise resources • Move it for MS: a DVD of exercises for people living with MS • Exercises for people with MS: an online resource. The exercises

are arranged in categories based both on how they are done and the problems they address www.mstrust.org.uk/a-z/exercise

9.


Websites • MS Trust website: a reliable source of information about

symptoms, treatments and more www.mstrust.org.uk

• MS services: a map of local services and MS specialist centres www.mstrust.org.uk/map

• StayingSmart: a website designed for people who want to understand how MS can affect thinking, memory and concentration www.stayingsmart.org.uk

Online support groups MS People UK An online community for those with MS, their families and friends www.ms-people.com

Jooly’s Joint An online community of people who live with MS www.mswebpals.org

Benefits and legal advice

Disability Law Service Offers free specialist legal advice for people living with a disability http://dls.org.uk

Access to work SchemeInformation about grants for assistance in travelling to work and workplace adaptations.www.gov.uk/access-to-work

Disability Living Allowance helpline Advice on Disability Living Allowance (DLA) Tel: 0345 605 6055

Attendance Allowance helpline Advice on Attendance Allowance (AA) Tel: 0345 605 6055

57 telephone 0800 032 3839

Personal Independence Payment helpline Advice on Personal Independence Payment (PIP) Tel: 0845 850 3322

Department of Work and Pensions The government department that oversees the benefits system, the website has information on the range of benefits available www.gov.uk/dwp

Citizens Advice Bureau Offers free, confidential, impartial and independent advice, including benefits, legal matters and employment rightswww.citizensadvice.org.uk

Equality and Human Rights Commission The Equality and Human Rights Commission is a good source of advice if you feel you may have been discriminated against at work or elsewhere www.equalityhumanrights.com

Getting around

Blue Badge Scheme Information on the Blue Badge Scheme, including eligibility, where it can be used and how to apply for a Blue Badge www.gov.uk/blue-badge-scheme-information-council

Shopmobility A federation of more than 250 schemes providing scooters and wheelchairs for shoppers with mobility problems www.shopmobilityuk.org

Motability A national UK charity that helps disabled people and their families become more mobilewww.motability.co.uk


Driving MobilityA network of independent organisations who offer information, advice and assessment to individuals with a medical condition that may affect their ability to drive www.drivingmobility.org.uk

Equipment and adaptations

Disabled Living Foundation Provides information on disability equipment, day to day household gadgets, new technologies and training techniques www.dlf.org.uk

Remap Federation of volunteer organisations that provide custom made aids for people with disabilities www.remap.org.uk

AbilityNet Offers advice, support, assessment of needs and the supply of adapted computer equipment for people with any sort of disability www.abilitynet.org.uk

Foundations Has information on local Home Improvement Agencies, which can offer help with finding funding and managing home improvements www.foundations.uk.com

Relationship support

Relate Offers advice, relationship counselling, sex therapy, workshops, mediation, consultations and support face-to-face, by phone and through the website www.relate.org.uk

59 telephone 0800 032 3839

British Association for Sexual and Relationship Therapy Professional body for sexual and relationship therapists. Can provide a list of accredited therapists in your area www.basrt.org.uk

Health and social care information and carer support

Arranging health and social care Includes information on accessing health and social care assessments, direct payments, professional carers and help with health costs www.nhs.uk/CarersDirect

Carers Direct helpline Provides information to support carers Tel: 0300 123 1053

Carers Trust Provides information, advice and services for people caring at home for a family member or friendwww.carers.org

Carers UK Provides information and advice to carers www.carersuk.org

Holidays

Open Britain A guide to accessible accommodation in the UK www.openbritain.net


Tourism for All Provides information on accessible accommodation of different types in the UK and abroad, includes a directory to search accessible accommodation, attractions, respite care and serviceswww.tourismforall.org.uk

Disability Holidays Guide Provides information and a holiday search facility for people with a disability www.disabilityholidaysguide.com

61 telephone 0800 032 3839

Notes


Notes

63 telephone 0800 032 3839

About the authorSimon Webster, Information Officer, MS Trust Thomas Allard, Content and Engagement Manager, MS Trust

The MS Trust is a UK charity for people with MS, their family and friends. The MS Trust Information Service offers a personalised enquiry service; produces a wide range of publications including Open Door, a quarterly newsletter; and provides web based information.

Thank you to

All the people with MS and the health professionals who have made this book possible through sharing their experiences of secondary progressive MS and by commenting on draft versions of the work in progress.

Please contact the MS Trust information team if you would like any further information about the reference sources used in the production of this publication.

This edition published 2017. This publication will be reviewed in three years.

Bibliographical information

Thomas AllardSecondary progressive multiple sclerosis ISBN 1-904156-312© 2017 Multiple Sclerosis Trust

All rights reserved. No part of this book may be reproduced, stored in a retrieval system or transmitted in any form by any means, electronic, electrostatic, magnetic tape, mechanical, photocopying, recording or otherwise without the written permission of the publisher.

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