Working with people with primary progressive MS
Alison Smith, rehabilitation nurse
Open Door - February 2011 page 7
To mark the publication of the MS Trust's new book Primary progressive MS exposed, this issue of Open Door has two articles that look at this type of MS from different points of view.
Alison Smith
I first started to work with people with multiple sclerosis when I transferred to the Kings Lodge rehabilitation unit in Derby in the late 1980s. At that time people were admitted for one of two reasons.
- For inpatient rehabilitation following a relapse
- Respite care; this was often people with progressive MS. Whilst in Kings Lodge they would have their MS reviewed, effectively an MS MOT.
I always felt drawn to the issues of the second group.
In 2001 I was lucky enough to join the rehabilitation medicine outpatient team. Initially I was working with people with different progressive neurological conditions; but MS became my special interest. I now run two clinics a week, see patients in their own home and provide telephone advice and support to patients, their relatives and other health and social professionals involved.
I always feel saddened and frustrated when people have a belief that PPMS is 'the worst kind'. In the presence of a steadily progressing condition, I see many patients come into their own. Considering their future, making plans, and taking control in a way that may have been alien to them prior to being diagnosed. Witnessing someone do this is a profoundly humbling experience. I always consider my work as complementary to the patients' own adjustments and plans. Of course I have 'specialist knowledge' but that is there as a resource for the patients to use. Forward planning is a useful approach to minimising the day to day impact of MS, in PPMS the potential for this is considerable.
At the heart of rehabilitation medicine is goal setting. I see people set incredible goals for themselves and achieve them against the (perceived) odds. I am also privileged to help some people raise their expectations and fulfil dreams they thought unattainable.
People also have goals around staying healthy, minimising risks, and preventing secondary complications. As a health professional I am expected to advocate 'doing the best thing' all of the time, yet this can make me uncomfortable. In life we all have choices and some of these relate to, or impact upon, our health. There aren't many people who don't take risks sometimes - that is part of life. So I will support any patient who doesn't always want to do the 'best thing'. Maintaining a balance between playing safe and taking life enhancing risks is a realistic compromise. With PPMS the possibilities for this sort of compromise are quite extensive. However this balance cannot be struck if there is insufficient information.
Primary progressive MS exposed
I am sure this book will help people living with PPMS. Not only does it provide bespoke information enabling them to plan, make decisions and work out their personal way of living with their MS, but it may also give healthcare professionals greater confidence in discussing the issues faced by a person with this diagnosis.
Alison Smith
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Open Door articles are reproduced as published. They are not updated to take account of subsequent developments. Use appropriate caution in acting on the information in any article.