All aboard for essential tremor awareness
NTF Support Group Coordinator, Jackie Farrell, shares her experience of raising awareness of tremors on board the Queen Anne ship.
Essential tremor talk with Jackie Farrell
On a recent cruise to Iceland, I arranged an Essential Tremor Get Together/talk aboard Queen Anne. Fourteen people attended, mainly from UK, but also South Africa and Australia. Some attendees had ET, some came on behalf of their other halves who had ET or knew someone with it. A couple came simply to find out more about the disorder.
All were surprised to see ET mentioned in the ships daily programme
All were surprised to see Essential Tremor mentioned in the ships daily programme and not one person knew of National Tremor Foundation! I had taken some NTF pamphlets with me which were welcomed by the group to take away with them.
Everyone was keen to hear more about ET as most when diagnosed, were simply told they had Essential Tremor and that was it, no additional information was given. A familiar story we often hear in UK and which clearly showed at the event, was the same in other countries too.
A few of the group shared that some people with tremors do not go to the GP for fear they may have Parkinsons. Another familiar story we often hear.
I also had the opportunity to mention the James Lind Alliance Essential Tremor Priority Setting Partnership survey.
It was definitely worth arranging the Get Together as people expressed how coming along to the event helped them understand more about the disorder and that they were not alone.
As well as the Get Together, I also unexpectedly met three other people with ET on separate occasions during the holiday.
Reflecting on the cruise, I have such wonderful memories of all the places we visited, plus also meeting others with Essential Tremor!
Jackie Farrell
NTF Support Group Coordinator
