Salisbury Shakers November meet-up
Salisbury support group organiser Sheelagh Wurr reflects on the Salisbury Shakers November meet-up.
David gave a demonstration of how his DBS worked
Salisbury Shakers had a very interesting and informative meeting today.
First of all, we found out it was Janet’s birthday and she brought some delicious homemade chocolate brownies which were an excellent way to start the meeting! Thank you, Janet!
Ten members attended, although two had to leave early (making sure they had their chocolate brownie first!).
We then had some interesting reports from three members and their partners about current treatments. Jillian reported that, after much persistence, a consultant geriatrician agreed to refer her to Southampton Hospital as the waiting list at Bristol was 50 weeks. Following an assessment when she still had not received the promised letter, she made several phone calls and eventually managed to speak to the neurosurgeon, after contacting his secretary. The neurosurgeon was very helpful and offered a thalamotomy. (Coincidentally, this neurosurgeon is the one who has offered to come and talk to our Salisbury Shakers group.)
First, she must undergo a scan to rule out any other disorders, and she is currently awaiting an appointment for that. Everybody in the group is impressed by Jillian’s tenacity. It has taken a lot of time and much persistence on her part to achieve this. Jillian observed that you can have very different responses depending on who you see. Getting a neurology appointment is very difficult if you are older. Other members have had similar experiences of this.
David, who has had DBS at the John Radcliffe in Oxford, gave us a demonstration of how his DBS worked. He showed us a small electronic device which he pressed to his body which switched everything off. We could then see how shaky his left hand was. Immediately it was switched on again, the hand steadied. David’s speech has been affected somewhat by the procedure although not seriously. If he were to adjust the device so that his tremor disappeared, he would lose all speech, so it is a matter of getting the balance right. His consultant told him that technology was moving on all the time and procedures such as these would continue to improve.
Steve and his wife, Janet, had attended the Bristol conference last year and managed to get a referral to Dr. Mihaela Boca in Bristol, whom they had met there. Again, Dr. Boca was helpful and recognized Steve from the conference.
We finished by discussing our next meeting. The decision was made that we would meet at St Thomas’s on December 7 to see the Christmas Tree Festival. We can have coffee together there from about 10:30 am and then look at the exhibition of trees. Following that, we will go and have lunch together in Charlie’s, which I have booked for 12:00. Nearer the time, I will ask you to confirm whether or not you are able to come to lunch so that I can tell Charlie’s the numbers.
Sheelagh
