I was officially diagnosed with Parkinson’s in 2009, but I’d suspected I had the condition for around five years before that. I needed time to come to terms with it. After a few years, my wife and I decided that I ought to see someone to make sure we had the diagnosis right. Alan Whone (the researcher leading on the GDNF trial) became my consultant in Bristol.
Alan and I were discussing trials generally when he mentioned GDNF. At the time, Alan and I didn’t think my condition was severe enough to take part, but a couple of years later, I was reassessed and joined the trial.
I wanted to take part mainly due to the fact that it was the only thing around that was potentially going to halt the progression of the Parkinson’s, and theoretically regenerate the dopamine-producing nerve cells. I thought I would give it a go.
That’s not to say I didn’t have some reservations. Due to my medical training, I was perhaps more insightful about the things that could go wrong, particularly with invasive surgery. I did think, ‘Is this worth it?’. Speaking with my wife and children helped. They said that really, it’s a no-brainer. The alternative would be to sit at home and wonder what’s going to happen with my condition.
Plus, research is something I been involved in a lot throughout my career and I wanted to know what it would be like to be on the receiving end. So, it was about curiosity for me as much as altruism!
The feel-good factor
It was great to be a part of quite an innovative and pioneering piece of research — a real feel-good factor. The visits to the clinic and seeing the research team was always a pleasure. The team were always very cheerful and friendly — they treated you as a partner in the research. I really can’t say enough about them.
For me, the most challenging part of the trial was the anxiety it caused — worrying about what could go wrong. For example, what if the tubes got blocked up? But you have to shrug your shoulders if something like that happens and think: ‘Would I have done anything differently?’. And the answer is no. I did have a few occasions where the tubes didn’t work, but I just got on with it. We ended up running the infusion slower to prevent blockages. It gave me an opportunity to make a nuisance of myself with the nurses for a bit longer!
The placebo effect
In terms of results, I correctly guessed I was on the placebo in the first part of the trial. Though I actually felt a lot better after surgery, before the infusions started, which just shows the power of the placebo effect. It would have been nice to have been on GDNF throughout, but that’s the nature of research. It was a 50:50 chance as to whether I’d be on the treatment or on the placebo. The toss of a coin.
During the second half of the trial, all participants were given GDNF. It was then, the effects kicked in. My handwriting suddenly improved. I’d previously had good handwriting (unusual for a doctor!), but it was getting scruffy and spidery. It was actually one the early signs I’d noticed when I first thought I had Parkinson’s. It was really quite incredible seeing it improve again.
I play a little golf and found that I was hitting the ball better than before. So, it was small things, but they were definitely there.
Finding out the results
It was disappointing that the trial did not show significant clinical benefit but not entirely surprising. We did not get the chance to interact with other participants — we were like passing ships in the night — but when I did see people, you could see some that were responding very well, but others less so. There were only 41 participants, and there was great diversity within the group in terms of age, level of disability, and how long they’ve had the condition. With hindsight, you could argue that the results may have been better if the participants were studied for longer (I, for one still feel the beneficial effects of GDNF, 2 years on), or given a larger dose, or the scoring system was more specific to the individual participant’s results.
Although the main findings were not as we had hoped, the study has addressed some very important issues and will benefit many people with other neurological conditions. I am also hopeful that this is just a phase in the GDNF story. At the end of the day, we’ve got some answers and been given clues on how to move forward. That’s the nature of research.
Of course, the end of the trial meant no more GDNF treatment. This was tough, but it was just the way the cookie crumbled. I know some people were upset, but we were given excellent counselling to know exactly what we were signing up for with the trial, and all the possible outcomes. I went in with my eyes open.
After the trial
Two years on from the trial, I think I’ve actually improved. The biggest confirmation for me is that other people have noticed that my walking and general movement is better.
My golf is better than ever, with my handicap down from 22 to 19. I’ve won trophies in club competitions and my name is even on the board. I’ve been playing golf for 25 years and have never been so good!
But the best thing is that I’ve got my smile back. I used to have a very cheery face but that went with the Parkinson’s. Now, my face is much more expressive. My children say that the trial has put a smile back on my face.
Take part in research
Parkinson’s is not a ‘sexy’ disease, so it’s not talked about much. People just don’t understand it. So if people like Alan or Steve are willing to do something about it, and it can be publicised, that can only be a good thing. I do hope some positivity comes out of this trial, making people more aware of what Parkinson’s is actually like.
I would definitely encourage others to take part in clinical research. You can’t just wonder about what’s going to happen to you. Do as much as you can — be active, get involved, take back a sense of control. Taking part in this trial was part of that for me. I’d do it again in a heartbeat.