maryMary's Story

Mary opens up about her experience with essential tremor.

I have had essential tremor since I was born and I am now 60 years old, I find it difficult to talk to people who don’t know me, doctors especially. 

Before I was diagnosed, the doctor had no idea about essential tremor – and I had tried all the medication, such as Valium and Primidone, and all the different tablets, but they did no good at all.

At this point in my life I was very suicidal, so I went to the Ninewells in Dundee to the Centre of Excellence to find out what had caused it. There at the age of 48 I was diagnosed with essential tremor.

They offered me deep brain stimulation – but at the time I said I would have to have a few days to think about it.

 In September 2004, I had four operations and had the implants put in.

Because there is only one neurosurgeon in Scotland when there used to be four in Aberdeen, Edinburgh, Dundee and Glasgow, I have to keep going to Newcastle for help.

When I travel to Newcastle it costs me I am in the region of £100-£250 pounds to pay for fuel for the car. They only give me £35 for accommodation in Newcastle and 13p per a mile for fuel. They don’t pay for meals either– which is a joke.

However, the operation has saved me and I have never looked back. People who know me, know how much it has helped.

I now run the Scottish Tremor Support group Facebook page and I am on the disability advisory forum.

Read more about surgical treatment here.