Raising awareness in Northern Ireland
David Murdoch shares his story about living with essential tremor and raising awareness during March National Essential Tremor Awareness month.
Hello, my name is David Murdoch and I live in Northern Ireland.
At one of the NTF lunchtime meetings towards the end of February participants had a brainstorming session to come up with ideas for places and groups which could be contacted during the Awareness month. I made a list of those places that I thought I could follow through on, beginning with our local newspaper office.
I started writing a letter but wasn't exactly sure how to pitch it. That is why I was over the moon when Duncan Crossland put a template letter on the NTF website, and I was able to use it to get the job done. I also printed off the #NETAmonth poster and stuck it in our front window facing the street.
Based on the template I emailed a reporter I have dealt with a few times regarding local issues in the past. She telephoned me back a couple of days later and we had a good chat over the phone about essential tremor, which she said was something she had never heard about. I happened to mention the role that Lord Julian Fellowes has in the NTF and it turned out that this reporter was a huge fan of the TV programme Downton Abbey. In addition to my comments I sent her the link to the 'Personal Stories' section of the NTF website so she could 'hear' first hand how tremor affected a whole range of ages from the very young to teenagers to older ones.
I thought the newspaper would simply publish the NTF press release with one or two comments, so I was very surprised when a full page write-up appeared in the Newtownards Chronicle the following week and it had so much about my own essential tremor journey. Apparently her editor had wanted a personal interest story - so that was the angle she had taken. However, the fact that she refers in the article to how school children are affected by tremor proved to me that she must have checked out the NTF links I had given to her.
The positive upside of my photograph appearing in print is that several people have since come up to members of my family to say that they were intrigued to see my photograph in the local newspaper, read the article, and it was the first time they had heard of this neurological movement disorder! A good result as it has obviously increased publicity about essential tremor.
In the meantime, the NTF website had a new post encouraging us to write to our local MP to support an Early Day Motion in Parliament. I emailed my local MP Jim Shannon, (Strangford). He currently has the role of the Democratic Unionist Party's Shadow Spokesperson on Health. I was later interested to learn from Jackie Farrell that she had previously met him at Westminster with getting support for Focused Ultrasound on the NHS.
Immediately after emailing this MP, I thought to myself that it would be a good idea to similarly email my 5 local MLAs (in Northern Ireland, MLA stands for Member of the Local Assembly.) I looked up their email addresses and wrote a short message including a picture of the #NETAmonth poster as well as links to the NTF website. After sending my email to our constituency MLAs, I sent the same to the assembly's Health Minister and Deputy Health Minister; and thought I might as well include the country's First Minister Arlene Foster and the Deputy First Minister Michelle O'Neill - because as was said in a recent NTF meeting, just getting the name "essential tremor" out there will help us to spread the news and who knows what might result from it in the future.
A day or two later I decided that I would do the same with the local borough council members. So I emailed each of them as well as our Mayor and Deputy Mayor. I was pleased to receive personal acknowledgements from some of them in reply.
Because Northern Ireland, unlike England, remains in strict lockdown some of the places (gyms, cafés, etc) I had wanted to put up the poster remained closed and I was unable to do it.
Although it was well into the month of March by then I decided to send emails with attachments to our GP surgery and the local Citizens Advice Bureau in the town.
Then it was announced on the television that churches would be allowed to reopen for Easter weekend, so I thought to myself that's another place where people gather and perhaps might read a bulletin board, so I looked up to see how many of them had a contact email address, and over the course of the next three days I emailed several of the churches in Newtownards and the surrounding villages. Then I ran out of month!
Alongside this activity I was also sharing information about essential tremor on my personal Facebook page, and this too has generated interest from other people. I was able to refer two of our American friends and one Australian friend to the Web page of the International Essential Tremor Foundation (IETF) since they did not know that an international support organisation even existed!
Did I enjoy the experience? Yes, I did. It was brilliant to be part of a much wider activity and to have a personal share. Thankfully because of the Covid-19 lockdown I had more time at home than I might usually have had during a normal year, so I could devote more time to this endeavour.
In conclusion I have to say that I was especially appreciative for each of the suggestions and accompanying templates provided by the NTF website. Well done. A big thank you to Jackie and Duncan and all the other people in the background. I also learned a lot from the NTF's first webinar and enjoyed the variety of outline events throughout the month of March.
Perhaps next year I will be able to have a greater share during March 2022 when places of business will have reopened and I will be able to talk to people face to face.
I genuinely hope that I, in some small part, have helped to raise awareness of essential tremor in our local area and perhaps further afield during this March awareness month.