Jeff Tottle – “Somerset Shakers and Shufflers”

Dates: 1-14th September 2021

Method: Walking

My name is Jeff Tottle, I was diagnosed with Parkinson’s in May 2000 when I was 42 years old. This was a complete shock to myself and my family as there was no family history of the disease. The most I knew about Parkinson’s was that Muhammad Ali had it, and I naively thought that was down to his boxing career, little did I know in that moment of diagnoses how much my life would be affected in the years to come due to this debilitating condition.  

In 2013 my consultant at the time, Dr Fathers told me about a new ground-breaking trial that was taking place in Bristol and how he thought and hoped that I would fit the criteria; that being the GDNF trial. My wife Mary and I were put in touch with the team in Bristol and so began the next three years of being involved with what I can only describe as the most pioneering and revolutionary experience of my life which would require myself and 41 other amazing men and women having experimental brain surgery, where an experimental device would be inserted in our brains in the hope of proving the effectiveness of GDNF. I later found out that for the first 9 months of the trial I had received the placebo drug as opposed to the real GDNF and quite frankly this was a relief as I had hoped this to be the case as I felt no different from those first months of infusions. However later in the trial after having the GDNF infusions the change within myself was tremendously noticeable not only to me but to my friends and family. My overall mobility was far greater than before the trial began, my walking improved by three times that at the start, which can be seen in the BBC 2 Documentary. It was not just physical improvements that were evident, my speech and general cognitive abilities had also greatly improved. Not only could I see improvements in myself but the positive changes in the other participants were outstanding.  

I believe in the effectiveness of GDNF and truly have faith in its ability to slow down or even stop the progression of Parkinson’s and therefore I will do anything in my power to help support getting another phase of the GDNF trial off the ground. Therefore, I along with members of my family and friends will be taking part in the Unifying Challenge to walk 100 miles in 10 days, something that for most people may not appear particularly challenging but for those of us with Parkinson’s will at times feel completely unachievable. Believe me there are times that walking from my kitchen to the front room may as well be me walking from Lands’ End to John O’ Groats, it is so difficult to get across to someone just how much Parkinson’s effects your whole body, your mindset and the lives of you and your family.

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