Salisbury Shakers July meet-up
Salisbury support group member Andrew reflects on the Salisbury Shakers meet-up held on 19th July.
The Salisbury Shakers met at St Thomas’s
Again, a small but select group of Shakers met at St Thomas’s to discuss all thing ET, and a lot more besides.
We hope it is just the holiday season that has reduced the number of shakers attending the meeting over that last couple of months. We all thought it useful to meet and chat about the problems we face with Essential Tremor but also about what is happening in our lives.
Following the request from the National Tremor Foundation all of us have written to our MPs to inform them of the Parliamentary drop-in day in September. We hope that will provoke some discussion amongst MPs about ET. One problem that Gillian identified was that of getting to speak to an ET expert, i.e. consultant, in the NHS. Often, you come to a dead end by being sent to the wrong department or to someone who does not understand ET and dismisses it as unimportant or dismisses you as too old. Or told that something will be done but it never happens. Sometimes it feels that we are just going round in circles. It was felt that a clearly defined path of investigation, diagnoses and treatment options for ET within the NHS does not appear to exist.
It was asked if ET can affect your balance? It can. Gait Ataxia is known to affect people with ET. It is an instability when walking causing you to stumble or veer to the side. Not helpful if asked by a Policeman to ‘just walk down that white line sir’! One of us wondered if it could be the cause of her not being able to swim in a straight line when doing backstroke. I’ve not be able to find any research papers investigating this phenomenon.
Finally, on a non-ET matter, Dave is waiting for a hearing assessment and we talked about NHS hearing aids. Two of us have NHS hearing aids and we both benefited from receiving cancelled appointments which enabled us to be assessed and receive our hearing aids quite quickly. Let’s hope Dave also receives a quick assessment.
Our next meeting is at St Thomas’s Church Salisbury on 30th August.
