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Primary progressive MS exposed Coping with increasing disability and maintaining independence

Most people view 'normality' as being able to do what they want, when they want. Being able to go to places, enjoying social and intimate relationships and maintaining independence and dignity are important to everybody. In the face of increasing disability it can be difficult to maintain a sense of normality.

Everything goes too fast for me - is it MS, old age, or both? I get so frustrated, always remembering how much more quickly I could do things in the 'good old days' when I walked normally, held down a job and could venture anywhere, anytime.

David, Leicestershire

I sometimes feel like I am sitting on a 'time bomb'. Will I stay the same or will the disease suddenly accelerate? I try not to think too much about the future and live day to day.

Jean, Cornwall

When faced with a new or worsening symptom, you may find yourself going through the whole grieving process again. Fears for the future resurface: "What impact are these new changes going to have on my relationships?"; "How am I going to maintain my dignity in the light of difficult symptoms?"; "Am I going to need to use a wheelchair?" These fears can result in heightened stress, anxiety and when there is no motivation to re-invest in life there is a real risk of developing depression.

There are times when I could sit and cry, but there's nothing to be ashamed of for feeling that way.

Vanessa, Lancashire

I find life progressively difficult but try to be positive, which is the only real way to face MS I feel. I can't tap dance any more - but I couldn't in the first place!

Robin, Norfolk

Depression

Depression is different to the lows or blues that everybody experiences at times; it is a persistent and pervasive low mood that lasts for a period of two weeks or more. The causes of depression are not fully understood and anyone can develop it any time in their lives. People with a long-term condition such as MS are more at risk for developing depression, as are older people who tend not to have the sense of immortality we have in our 20s and 30s. It is important to recognise that you may be at increased risk of depression, particularly at diagnosis and times of significant change in your condition. Depression can affect your sleep, you can lose interest in food, find it difficult to be motivated and this all has a negative impact on your energy levels and general wellbeing. Depression is treatable, so if you are able to recognise that it may be a problem, something can be done to help. The first step is to go to your GP and talk about it.

I am profoundly depressed …my self-esteem is on the floor and I simply can't bear the sight of myself. The person I was is lost.

Fiona, Surrey

Depression varies in its severity. Some cases are mild and may respond to 'talking therapies', these help you identify and overcome the negative thought patterns associated with depression. In more severe cases of depression, drug treatment may be recommended. Antidepressants can also be used in combination with counselling.

Counselling has helped me climb out of periods of depression, and to come to terms with enforced changes in lifestyle … it's painful at times, but very beneficial having someone with professional skills and emotionally uninvolved, to help you identify problems and steer you towards dealing with them.

Maggie, Yorkshire

Medication and mood

Emotional and cognitive changes, such as depression, mood swings, and problems with memory or word finding can all be associated with coming to terms with living with a long-term condition. However, they can also be side effects of the medications that are used to treat the symptoms of primary progressive MS, for example antidepressants and steroids can affect mood. It is important to seek help if you think that any of your treatments are having a negative effect on your mood. Tell your health professionals about all the medications you are taking as there may be alternatives that suit you better. Sudden withdrawal of some medications, for example baclofen for spasticity, can also lead to anxiety so seek advice if you are considering stopping any treatments.


Stress and anxiety

Stress is a normal part of everybody's life, it can't be eliminated completely, but it can be managed to some extent to lessen its impact. Learning to manage stress is particularly important for people with MS who often report that their symptoms feel worse when they are under increased stress.

I suffer from anxiety attacks. I think this may be due to worrying about what I can no longer do.

Mandy, Nottinghamshire

The first step in managing stress is identifying what causes you to become stressed. Maybe it is new social situations, looming deadlines at work or the fact you are not working, or even large family gatherings. Often the event is not the primary cause of stress, but rather our reaction to it. In the majority of cases it will be impossible to avoid the stressful situation altogether, but it may be possible to develop strategies to manage the circumstances better. Prioritisation is important. Although we all have to do the things that are necessary, are there other things that can wait? Can you make the time to do the things you enjoy and give your life more balance? Maybe you need to be more assertive and learn to say "No!" in certain circumstances. Perhaps you could relax your standards a little bit if you have a tendency to aim for perfection all the time. Stress and anxiety can be helped with techniques such as yoga, Tai Chi, meditation or relaxation. Taking five minutes out to perform some breathing exercises may help put things back into perspective.

I have learned to meditate which helps me mentally and helps me to cope.

Christine, Wiltshire

Maintaining independence

Needing to use adaptive equipment, such as a stick or wheelchair, or aids to help with day to day living such as getting in and out of the bath, may become a reality if your ability to carry out everyday tasks is reduced. This can be difficult to come to terms with as they are very visible indicators of your condition, which previously you may have managed to keep fairly well hidden. Choosing not to use assistive equipment, perhaps due to embarrassment or an inability to accept help, could result in you becoming withdrawn and socially isolated, which impacts negatively on your wellbeing. Try to look on using aids as a way of maintaining your independence, rather than as a negative thing. Aids can have an important role in allowing you to retain social contact and do the things that you enjoy doing for a longer time. Maybe you thought you were going to have to stop walking the dog, but using a stick or mobility scooter could be a way of continuing to take pleasure in this activity.

Recently my physio gave me a walking stick, I was reluctant to take it due to embarrassment as I'm 33, but I use it when I really have to, to give me a little more independence. When shopping I know my partner would steer me away from clothes/shoes, now I can totter over with my stick!

Laura, Essex

Although it is not probably something you particularly want to think about, especially if you are currently managing well, it can be beneficial to plan ahead and learn about options for resources and services that you may need in the future; then if you do have a crisis it may be less stressful as you already have the relevant information to hand.

In my experience, NHS and social services tend to be reactive rather than proactive, so one needs to know what to ask for. Other people's hard-won knowledge is vital.

Michael, Surrey

Changing family roles

Things you have always done may become more difficult, or you may have to give up some things you have always done. Maybe there are things you had anticipated that you would do in the future, such as helping care for your parents or a partner as they age, or looking after grandchildren, that may no longer be possible. A partner or other family member may have to take on these tasks and it can be stressful whilst everyone learns to adapt. It is important when family roles change to keep the communication channels open to keep potential conflict to a minimum, especially as individual feelings may be out of sync. A partner may feel overburdened; whilst you may feel frustrated that they are taking over and doing things that you still want to do. A breakdown in communication means problems are unlikely to get resolved.

My husband tends to do too much for me and is unwilling to leave me to do simple things - he won't let me assist with meal preparation, even though I could for instance chop vegetables.

Linda, Northamptonshire

Recognising and addressing problems can make a major difference to the dynamics of your relationships. Some people find it useful to get the whole family together to set out their expectations and develop coping, communication and problem solving strategies, but this approach doesn't suit everybody. Others opt for external help, counselling can work on improving coping and problem solving skills, as well as communication skills and increasing self-awareness. Remember, relationships are the responsibility of everyone in the relationship, not just the person with MS.

A major role change that may have to be considered at some point is whether a partner or other family member is going to take on a caring role. This is not something that everyone is willing, or able, to take on. They may not be able to face the intimate tasks that caring can involve, or it may be that they are the main breadwinner in the family and need to keep working. In these circumstances it can be better for everyone concerned if professional help is sought. Nobody should have to be a carer if they don't want to be.

I took the decision from an early time that I was not going to keep my complaint hidden and most people have been supportive. However, my wife was not able to fully accept the situation and we were divorced.

Richard, Gloucestershire

If a partner chooses to take on a caring role, whether this is on a full or part-time basis, there are lots of things to consider. It can be easy to lose your identity as a couple as some partners begin to feel more like a parent than a partner, especially if they are providing regular hands-on care. It can also be a struggle to maintain sexual attraction in this situation which can result in a loss of intimacy. This may be compounded if sexual dysfunction is experienced as part of the MS. Fatigue can also be a big issue, both for the person with MS and the caregiver, and romance may be the last thing on your mind. There are also potential financial implications if a partner has to reduce their working hours, or stop working to spend more time caring, so make sure you are aware of any benefits that you are entitled to claim.

I am frightened by what is likely to happen to my mobility and how dependent I will become on my husband.

Julie, Surrey

Taking care of a loved one can be both physically and emotionally draining. The caregiver often neglects their own health and wellbeing as they are so preoccupied with looking after the other individual. There is also the potential to become socially isolated if they have a full-time caring role. It is important they take time out where possible to do something they enjoy and have some balance in their own life if they are to avoid physical, mental or emotional burnout.

For some people, very advanced primary progressive MS can mean they have a level of disability that requires more specialised care than a relative is able to provide. Although there may be care services that can help a person remain in their own home as long as possible, in some circumstances the level of care required may mean they have to move out of the family home. This is never an easy decision for anybody to make, but planning ahead and finding out about the options, resources and services that are available can make it a less stressful experience if it ever has to be faced.

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