Ken Dewhurst

I first noticed my tremor in December 2004 (aged 43). My GP referred me to a Neurologist and by August 2005 I was officially a PwP. The drugs started with beta blockers for the tremor, then along came mirapexin and sinemet for movement and energy. Looking back, the first real signs were extreme fatigue from 2000 onwards. I’d literally, stop halfway up the stairs and lie down to rest, then have great difficulty in getting up.

Carried on working until June 2010, when my employer and consultant both agreed that stopping work would allow me to concentrate on timing my meds for what I wanted to do, not just to get me through the working day, leaving me a shaking wreck in the evening and night.

Fortunately, I had PHI and an excellent employers pension/sick scheme, so financially things have been settled. I’m sure this has contributed to keeping me and the family positive. I exercise regularly and play golf for part of a round, and just shuffle round once the meds wear off. I’m the type that until this year at least, you wouldn’t guess I had PD as I took meds to be ‘normal’ in public. Now, the tremor is in my face as well as arm and leg, so more people know I have PD and I have found being open with everyone I meet helps them as well as me.

My wife ‘cares’ for me by not letting me dwell on the effects of PD, expecting more help round the house as I’m there more than she is. That said, peeling veg, hanging out washing and ironing are the least likely things I would have listed as tasks that help me, but they do force me to keep my dexterity up to scratch, albeit slowly. You should see me thread a needle with tremor at full chat, it can be done with a lot of patience.

In 2014 I discovered The GDNF Trial at Bristol, Southmead Hospital. I wasn’t suitable for the tial in February but as my symptoms progressed through 2014, I came eligible and had my surgery in December. After 21 infusions I received the news that my first 10 infusions had been the placebo. This came as no surprise to me as I had only begun to notice changes from infusion number 12. By the time of my last infusion I had become the fittest I had been my entire life with enormous reserves of energy.  However the Trial protocols didn’t give enough credence to how I felt after only 11 real GDNF infusions. In Spring 2017 the Trial results shocked us all and we formed the GDNF WhatsApp group to vent our frustrations and begin our campaign to get GDNF back in the spotlight.

During 2017 and the initial part of 2018, the decline in my abilities due to PD and the onset of falling over becoming a real problem, I enquired about DBS.  I had all the tests and removal of the majority of my GDNF infusion plumbing. DBS was installed and went live in December 2018. A very welcome Xmas present as my mobility and tendency to fall were greatly improved.

DBS has worked in delaying certain symptoms but nowhere near the way I’d now feel if GDNF hadn’t been stopped

The ‘off’ periods are now increasing in frequency and duration, so some days, I rest in order to be able to exercise, and then have to rest because I’ve exercised. I’ll be the fittest person asleep in my street soon, but my tremor will still wake me up at night.

Looking back, I am reminded of my theory over why PwP have quiet voices. In my case at least, it began when my inability to construct a coherent sentence in a conversation led to me saying things quietly for fear of the jibberish that I may utter. Speech therapy is great, but only for loudness and if you can be confident the words that come out of your mouth make sense..

My poor speech and handwriting are at the top of my hitlist for the future. Perversely, when I switch my DBS off, my speech often improves, at least until my tremor gets uncontrollable or I fall over. Not the answer.

Never give up. Never surrender.