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To mark World Parkinson's Day we have spoken to Phillip, one of our amazing patients who is doing his bit to improve healthcare in the future, by being a part of invaluable research. 

The Padova Trial is a drug trial, that aims to improve the symptoms that patients suffer when living with Parkinson's disease, the trial has been running at our Trust since 2021.

My research journey began in October 2020 when I was referred to a consultant to assess a persistent tremor in my right hand. After a few tests his diagnosis was one of Parkinson's. I was convinced that I had an Essential Tremor, as there was a family history of this, so he referred me for a DaTscan 'to put my mind at rest' as he put it. A week or so after the scan he saw me again to confirm his diagnosis, and I asked him if there were any research studies that I might be suitable for and he gave me details of the study I am now part of.

I applied in early 2021, as one of the first applicants for the trial in the UK but fell at the first hurdle as one of the sponsors criteria for selection was that applicants must only be on one type of medication whereas I was on two. Not to be daunted by this setback I dropped the second medication and applied for the trial again six months later. My application was successful at the second attempt, and I started in earnest in January 2022. I was now third in line with two other applicants a month or two ahead of me.

Being on the trial has given me a sense of purpose. My main responsibility in life following my retirement in 2008 was as carer for my wife who then had a terminal illness through to her death in August 2010. I then took care of my father-in-law, who was diagnosed with Alzheimer's in 2011, until his death in 2016.

Following the loss of my wife I felt devoid of any real purpose and took on voluntary work at a local primary school - firstly by supporting reading, swimming, and residential trips for years 4, 5, and 6, and also for 5 years as a school governor. But then Covid and Parkinson's came along in quick succession, and I lacked a sense of purpose again. I decided not to dwell on my Parkinson's diagnosis but to try and build something positive out of it. By my involvement in the trial, it has helped achieve that, and I see it as my bit for medical science.

Another benefit is that it has immersed me fully into Parkinson's research and given me a quest for knowledge on the subject. I read with interest and eagerness the occasional newsletters from the sponsors as to progress of the study. My quest for knowledge on both news of the trial and on Parkinson's research in general is greatly helped by the openness of the Study Doctor and nurses in the Research Team who answer all my questions in a clear and factual way.

I also consider that via the trial my general health is monitored much more closely than it otherwise would be. One of the spin-off benefits of being on the trial is that I benefit from regular monthly health checks by the study doctor and nurses including blood, ECG, and other tests as required. This regular testing has picked up several potential medical problems and resulted in referral for further investigation. My Parkinson's condition is also being very closely monitored and a necessary adjustment to medication was prompted as a result. This monitoring compares very favourably the usual annual appointment with my Parkinson's Consultant, and the occasional input from my GP and Parkinson's Nurses.

Being on the trial has also tested and helped me overcome some fears and challenges. For a start I am not good with either blood or needles so have found that difficult to get used to. Also, there are occasional visits where I have to be in an 'off' state, free of the benefit of medication, and this is also quite a challenge. I am increasingly conscious of my worsening tremor in this situation, although I realise assessment in that physical condition is a necessary part of the trial. Overall, I think I have persevered and made progress in dealing with my trepidation.

One other unexpected benefit has been the opportunity to occasionally meet with the two other participants on the trial, and this has enabled discussion and a sharing of experience. I have also had the chance to see from up close the NHS at work and I am grateful for the great care and attention provided by everyone in the Research Team. 

There are one or two downsides to being on the trial and the main one is the realisation that it could end suddenly at any point in time. This uncertainty would leave quite a hole in my Parkinson's journey, and I think it would have a destabilising effect, so after 4 years in and counting long may it continue.  Overall, my opinion is that the benefits of being on a research trial far outweigh any adverse effects, and I am very thankful for the opportunity to take part. My journey has been a rewarding one on several fronts and I would like to encourage anyone to take part if they get the chance to make a contribution to medical research.

I hope research will lead to better treatments, improved quality of life, and perhaps one day a cure. Every step forward in research makes a real difference not just for me but for my family and friends and everyone affected by Parkinson's.