We had 24 attendees for the meeting at Holiday Inn, Sutton, including two representatives from two Parkinsons UK Branches.

Arthur Hookway who has Parkinson’s and is Chair of Sutton, Kingston, Epsom and Merton Parkinsons UK branch, joined us to share information about the ‘World Parkinsons Day’ event on April 11th, at Sutton Library.

I feel honoured to have been invited by Arthur to have an Essential Tremor (ET) information table at the event; this will be a great opportunity to help raise awareness of ET that is often mistaken and confused with Parkinsons.

Mike who also has Parkinson’s and is from the Horsham Branch, shared that he is leading a collaborative project between University Hospitals Sussex NHS-FT & Parkinsons UK Horsham Branch. The project aims to assess the utility of a “wearable device library”, for the management of Parkinson’s symptoms. Mike uses the BeechBand for his Parkinsons and Arthur uses a Cue 1 device. People in general with any tremor conditions are always keen to hear experiences of wearable devices.

 

Roger collected our BeechBand Data forms from the 8 members who had been testing the device for 6 weeks. We will be interested to see the data outcome at our next meeting on 1st May.

Many in the group took part in the James Lind Alliance and Manchester Metropolitan University PSP Essential Tremor survey. The outcome of the survey to find the Top 10 unanswered Essential Tremor questions has just been released which meant it could be shared with those in the group.

We did a count at our meeting of who in the group with Essential Tremor had familial ET. It is said in medical circles that approximately 60% of ET cases are familial and our count came out at…. 60%!

The hotel staff look after us well which all helps to make it a relaxing and friendly environment.

We welcome new members and the next meetup is Friday 1st May at Holiday Inn, Sutton, 12noon.

Contact Jackie This email address is being protected from spambots. You need JavaScript enabled to view it.

Jackie Farrell