Before the trial
When it was announced that there was to be a clinical trial for something called ‘GDNF’ I wondered if I should apply, I studied the requirements and discovered that you had to of been diagnosed for at least five years. This excluded me, having only been diagnosed for four and a half years, although I had wanted to take part I was silently a bit relived.
Over the next few months I began to regret not being able to join and when in late February 2015 I discovered that the team were still looking for participants I jumped at the chance. Without any consultation I announced my plans to family and friends and on 3rd March I applied,
As part of the selection process I had to stop taking my medication to have my symptoms assessed. This was the first time I had been without my medication since I was diagnosed and it was a shock to discover ‘the real me’.
I found it extremely difficult to walk from the car park to the hospital, I was dragging my feet, shuffling and had developed a stooped posture overnight. My wife had to keep stopping to wait for me to catch up.
I was worried, without me realising I had become old and infirm with my medication hiding the truth from me, I was 53 and felt like 93. How long could I continue working? How would we manage if I had to give up work?
Entry to the trial was closing so things moved fast and on 28th March I had surgery to implant the port. I had six weeks off work to recover and then I settled into the monthly infusion routine.
During the trial
When I returned at week 8 for an off-medication assessment having had only two infusions of what I now know was GDNF, it was totally different, my walking had improved so much so that my wife had to ask me to slow down. I was over the moon, the difference in my walking was amazing, if I was like this after 2 infusions what would I be like by the end of the trial?
The infusions continued and slowly I began noticing things were changing. Before the trial when I woke up in the morning it felt like my body had seized up. To get out of bed I had to push myself into a sitting position on the edge of the bed, lean against the headboard, and from there ease myself up. It would then usually take 5–10 minutes of ‘warming up’ before my body was fluid enough for normal movement.
At around week 10, I woke and without thinking about it sat up swung my legs out of bed and stood up. I stood there pondering what was different? What was wrong? Then slowly the realisation of what had just happened swept over me.
I had got out of bed easily, without pain or discomfort, something most people take for granted. I started to walk around the bedroom, not the usual slow shuffle but proper walking which increased in speed until I was running around the room shouting excitedly to my wife who at first couldn’t understand what was going on. I stopped, looked at her and we both just smiled at each other.
I steadily improved throughout the trial my sense of taste and smell returned, my hand writing became readable, my tremor vanished, my Parkinson’s became merely an inconvenience
After the trial
It is now over 2 and a half years since the trial finished and I am convinced that I am still benefiting from receiving GDNF.
In the 12 months after my last infusion I deteriorated slightly, but now I sleep better, have more stamina, my hand writing is still improved and my tremor (my main symptom before the trial) is hardly noticeable and not at all bothersome.
I am still feeling better and have recently started dance classes, we went 3 nights running last week, something I could not have done a year ago.
Unfortunately, around nine months ago I developed what I thought was dyskinesias (involuntary movements) by May this year it was becoming problematic, around the same time i noticed that it was worse about an hour after taking my co-careldopa. I decided to stop taking my co-careldopa over one weekend and within hours the involuntary movements stopped almost completely.
I believe, and its only my personal opinion, that GDNF was once again working and that the brain cells grown during the trial are now fully developed and producing dopamine which when combined with my dose of co-careldopa resulted in me ‘overdosing’ on co-careldopa which caused the involuntary movement (which is a listed side effect of co-careldopa). I have now settled on a dose of co-careldopa which is half my previous dose, the involuntary movement has virtually stopped but stamina / energy levels remain high and i generally feel great. How is this possible when you have a degenerative disease?
Unfortunately, no provision was made for assessment or monitoring of the participants after the trial finished and so any data or information which I may hold is being lost and sadly despite my asking this data is not wanted.
Having spoken to several of the other participants since the trial finished my impression is that most people showed some form of improvement. However, I do think that I was probably one of the participants who responded best to the treatment.
Why was I so lucky? I don’t know, maybe I am comparatively younger than other participants or not so badly affected, this is one of many questions that remain unanswered, we need these answers.
I found taking part to be an extremely positive experience. Not only are you helping to find the ‘cure’, you are working as part of a team to discover Parkinson’s secrets. I was treated with the utmost dignity and respect at all times and I learnt so much more about Parkinson’s, plus you get looked after by leading specialists. I’m so grateful to have been part of it.
I have no idea how long my improvements will last or if there are more improvements to come this is why research is so important and GDNF certainly deserves further research to answer all the questions that have been raised by our experiences. The only way to make this wonder treatment available to Parkinson’s suffers is to support a phase 3 trial and the best way to do that is to help Darren achieve his goal to raise a million.
Please give generously.