From research to the Scotland Council - my volunteering story
From February this year I've lived with MS for 21 years since diagnosis! Balloons, streamers and brass bands please.
Those were the days of no drugs other than steroids and not a lot of research going on. My very nice consultant neurologist handed me the address of the MS Society and told me to ask for information. Oh yes, and he’d see me in a year.
Not so. I was back, this time taking up a bed in the ward, when a relapse hit me within the week and I couldn’t climb the stairs at work.
Fear for the future
And so it continued with aggressive relapses and hospital admissions peppering every year. By 2000, my career finished, I landed in rehab unable to walk, tied to a standing frame before learning to walk once more. The future for me and the family seemed very bleak.
Taking action for MS treatments
In sheer frustration I joined the first ever MS Society lobby in the Scottish Parliament trying to end the postcode lottery of the first disease modifying therapies for MS.
Following the lobby we put the case to the Parliament’s Petitions Committee – and we won! This meant that everyone with relapsing MS who was eligible should be able to access disease modifying therapies on the NHS, wherever they lived in Scotland.
Thus began my fascination with research.
Never looked back
I jumped at the opportunity to join the MS Society’s brand new Research Network in 2002 and never looked back. The network was a way that people living with MS could help shape the MS Society’s research programme. The knowledge I gained helped to reduce the anger and frustration I had been carting about with me everywhere.
I served on the Research Network Steering Group for a few years and learned a whole lot there. Life was suddenly full of challenges that kept me really busy and involved.
I know I was originally a grumpy patient, constantly asking questions that no one could answer. I believe working with the MS Society and particularly the Research Network, brought me some of the answers I sought and probably saved my marriage into the bargain.
A new chapter of volunteering
Five years ago, I was persuaded to apply to be part of Scotland Council and began a whole new education about how the MS Society is run and how local groups carry out the day to day work of supporting people living with MS and raising funds. I knew nothing!
Steeped in research, I had never been to a group and felt very ignorant. Luckily my local group in Fife let me sit in on their committee meetings so I could get an idea of what is involved. So, my thanks to them.
Hope for the future
As a granny of two, I will do everything I can to support the development of new treatments (one day maybe a cure) and improve social care. I cannot bear the thought of one of the children developing MS without the right treatment to allow them to live a ‘normal’ life.
That’s why I want us to help MS researchers in every way possible to speed up their work. Great strides have been taken in the last ten years. Now there’s thirteen disease modifying therapies for relapsing MS on the NHS, and one treatment licensed for primary progressive MS.
So let’s support the exciting years ahead, and especially research into treatments for those of us with the progressive form of MS.
As for me, I’m keeping going for as long as I can!