maryMary's fight for tremor

Mary Ramsay runs the Scotttish Tremor Society – and as she’s quick to tell you, ‘that’s Scotttish with three Ts, two for Scottish and one for tremor.’ Mary has had essential tremor since birth, and is currently treated with a deep brain stimulation unit. ‘It’s electrodes in the brain, basically like a pacemaker in the brain.’ And if that sounds uncomfortable it’s not just the treatment, but the distances involved, which can be exhausting. ‘There’s nothing for people with tremors in the north and east – it’s all centralised in Glasgow, and they will not accept anyone from the north and east because they have a long waiting list – so I have to travel from Inverness to Newcastle, which is a long journey. I could do Inverness-Dundee return in a day, but the trip to Newcastle involves an overnight stay.’

Mary has campaigned for disability rights and equality for 40 years, most recently on the need for a focus ultrasound device in north-east Scotland. Focus ultrasound, perhaps unsurprisingly, does what is says on the tin – it focuses ultrasound on specific parts of the brain related to tremors, and can be of great benefit to those with tremor conditions, such as essential tremor, Parkinson’s, and multiple sclerosis (MS). And, it’s non-invasive. ‘Not everyone wants electrodes attached to their brain,’ Mary says, ‘and this would give them hope for alternative treatment.’

Recently, Mary brought her fight to the Scottish Parliament. ‘It wasn’t until becoming involved with Inclusion Scotland that I had the confidence, thanks to Mr. John Beaton, to go for a parliamentary motion.’ On May 16th, a motion on focus ultrasound was brought to the Scottish Parliament by Mary’s MSP, Rhoda Grant. ‘Rhoda was very driven when I drew her attention to the fact that there is nothing for people with tremors in the north and east. She got cross-party support, and she and her assistant Olivia did a lot of research, including speaking to Dr. Tom Gilbertson at Ninewells. Because of their work, I felt every piece had been gathered and was ready to be presented.’ 

Mary attended the debate at the Scottish Parliament, and quickly made a name for herself. ‘I had a long, interesting chat beforehand with Edward Mountain MSP. He said I’d make him nervous, staring at the back of his head from the gallery, and I said “that’s okay, then.” The debate started – Rhoda said her bit, other MSPs contributed too, then it was Edward Mountain’s turn. He got a bit tongue-tied, and looked up at me in the gallery. “See Mary, I told you you’d make me nervous!” At this the Presiding Officer said “I wish Mary could teach me to make you all nervous!”’

'Beyond her instant notoriety, Mary is encouraged by the debate’s outcome. ‘Shona Robison, the Health Minister, didn’t come out and say no, like I thought she might, but has put the ball in Dundee University’s court to apply for research grants. Dr. Tom Gilbertson has been back in touch with Rhoda Grant to pursue this, so it is moving forward. I feel very positive that this wasn’t a “no”.’

Mary is determined to keep fighting for those with essential tremor and other conditions. ‘This has spurred me on to help other people, because I went to hell and back as a child, growing up not knowing what this was. I didn’t get a definite diagnosis until I was 48. I was told when I was 20 not to have children, but now I have three children and ten grandchildren. Not all medical professionals are right. If focus ultrasound helps someone avoid what I went through, I will fight to my last breath to get it. This isn’t the end of my fight for focus ultrasound, it’s the beginning.

‘My advice to people who are wanting to fight is go to your local MSP. Speak to them, be confident, and don’t give up at the first hurdle. Fight, and keep fighting.’

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If you have been affected by any of the issues mentioned in this story or want to share your story, please get in touch on enquiries@tremor.org.uk.

The NTF is sharing this article for information purposes only; it does not represent the NTF's views and is not an endorsement by the NTF of any particular treatments, therapies or products.