Raising awareness of Essential Tremor in London
After the huge success of last year’s event in Liverpool we held our Essential Tremor Awareness Day at The Royal National Hotel, London in October 2023.
Very kindly supported and co-hosted by Insightec, the event drew more than 60 delegates from both London and beyond, with people making the journey from as far afield as Cornwall and Yorkshire, as well as local to London itself.
James Blann of Insightec opened proceedings at 11am, and was then followed by Professor Ludvic Zrinzo of The National Hospital for Neurology and Neurosurgery. What ensued was an incredible overview of Essential Tremor, with the Professor explaining in a very easy to understand way, what ET is and what treatments are available to those of us who are afflicted badly enough to need them. Professor Zrinzo explained that beyond medications (and strategies that the individual can undertake – more on this later!) there are essentially 2 surgical approaches that neurosurgeons can offer to alleviate tremors.
He explained that there is deep brain stimulation and there is ablation, for which there are 3 different methods of implementation. Radio-frequency, gamma radiation, and the newest technique that is Magnetic-Resonance guided Focused Ultrasound. They each have pro’s and cons and as Prof Zrinzo explained it’s important to have an open discussion with the clinical team as to which is the most appropriate for individual circumstances. It was most encouraging to think that we don’t just have to sit at home and put up with the tremors, relying on the old GP advice of “have a drink”. Something can actually be done, and with Focused Ultrasound now having helped more than 13,000 people with tremors, we are definitely not alone!
Prof Zrinzo then handed the microphone baton to Karen Hull. Karen is a neuro-physiotherapist from Bradford and a huge asset to the NTF having presented on a few occasions now over the last couple of years. Karen focused her talk on balance and how important it is with Essential Tremor to be aware of it, and what techniques we can use to improve it. As Essential Tremor worsens over time it becomes more and more vital for us to have good core balance, and to minimize the risk of falls. It was very amusing when she used James as her guinea pig to demonstrate the impact on balance that having too much on your mind has – Karen really did prove that multi-tasking is not easy…well certainly not in James’ case anyway! Christine told us this afterwards, “I was very interested in what Karen Hull, a Neurological Physiotherapist, had to say. What she told us helped me make sense of issues I encounter and how I can help myself.”
Jackie Farrell followed Karen and gave a truly insightful talk on power of mindfulness and meditation, and included a simple demonstration of how by focusing on the breath and de-cluttering your thoughts, you can actually have a huge impact on tremor amplitude without pharmacological or surgical intervention. This really did open the mind as to what is possible.
Jackie has been inspirational over the years in her role as National Tremor Foundation Support Group Co-ordinator, helping countless numbers of people either struggling themselves with Essential Tremor, or caring for people who are. A case in point is the feedback that Hella gave where she explains that without Jackie she would neither have known about nor attended this event: “Without you telling us about the conference, I probably wouldn't have known or gone. I am definitely going to make a bigger effort with meditation. But as a retired person it's not so easy to find a regular time. Again, many thanks for all you do for the tremor foundation and us ET sufferers!”
Oscar Gomez-Reaney was the last of our speakers. Oscar is a young adult and spoke extremely eloquently on how ET is not restricted to those of us beyond “a certain age”. It was lovely to get the feedback from 16 year-old Lauren that she, “enjoyed the day and found it highly informative” and that she “will definitely be going to another one.” Essential Tremor is indiscriminate in terms of age, and whilst it is true that the majority of ET manifests over the age of 60, it is often the case that youngsters are also affected – maybe not with the same severity, since ET is for sure a progressive condition, but nonetheless it can have a distinctly debilitating effect on those with less miles on the clock, and Oscar highlighted the importance of not hiding at home and raising awareness that young people live with it too.
After our speakers had finished, an incredible lunch was brought out and it kept on coming as we moved into the Carousel of Chat. This brand-new concept comprised 5 round tables each hosted by a topic facilitator. Lauren’s mother Jo was particularly pleased with the concept and had this to say afterwards: “The speakers gave superb presentations on the condition itself and possible ways to manage it, including medication, surgery and physical/mental therapies. The informal set up meant that we enjoyed chatting with the others on our table over lunch. The buffet was served to the tables which meant people didn't have to worry about carrying plates. It was lovely to be in the company of others who live with tremor, and interesting to hear their stories of living with what can be an embarrassing and isolating condition. I noticed that everyone had different ways of coping and it was lovely to hear people sharing tips and stories in good humour. We are really glad that we attended and feel like we were amongst friends. Thank you for arranging such super event, we hope to see you again soon.”
The attendees picked a table around which to sit at the beginning of the session, and then every 25 minutes James called time and each group of 12 would rotate anti-clockwise. This way everyone rotated through each table and had equal opportunity to chat on each of the five subjects. The four speakers each hosted a table, plus we had Jodee Cooper and Peter Sutton of Queen Square Imaging Centre who were able to explain how people could access the Focused Ultrasound service that Professor Zrinzo and his clinical team were providing there. Karen and Jackie both delivered hands-on workshops teaching exercises on how to improve your balance and mindfulness respectively, Oscar led the conversation on what it’s like to live with ET as a young adult, and the Professor fielded more in-depth questions on the topic of Essential Tremor and its treatments.
All in all, the feedback on the event was superb, and for sure we will be repeating this format for future awareness events. Thank you to all those who came, a special thank you to our speakers, to James for facilitating and not being afraid to embarrass himself for Karen’s demo on balance, and to Insightec without whose support events like this would not be possible.