Lost for words

Usually it’s quite easy to come up with a title for these posts, but for this one it’s just not popping into my thoughts. And here’s why:

For those who don’t know (and a refresher for those who do) at the beginning of Covid – back in 2020 – I enrolled into the Stage 3 trial of a diabetes drug called Exenatide, which had seen promising results from stage 2 trials. (The descriptions of the stages can be found here: https://cureparkinsons.org.uk/research/our-ilct-clinical-trials/

The trial period was for two years. It has taken until now to release the results due to the delays caused by Covid, as the process had to be paused twice for lockdowns and I pay tribute to the team involved for their perseverance and commitment.

I was told last month that I had been on the placebo. I suspected that I was, or that the drug wasn’t being effective as my symptoms have progressed over since 2020.

The lead for the trial held a webinar on the 14th for the trial participants so that we could be told the results ahead of the general release. During the in-depth and well-structured presentation we were told the disappointing news that Exenatide made no difference to the progression of the disease.

The Cure Parkinson’s Trust disclosure is here: https://cureparkinsons.org.uk/exenatide/

One of the reasons for the struggle to find a title is the irony of the timing of the trial. Covid appeared, had millions thrown at it and a vaccine engineered, produced and implemented, all within the timescale of our trial for a disease-modifying drug. Not a vaccine, not a cure, but one that might at best SLOW the progression of the symptoms of Parkinson’s. A disease that was first medically described over 200 years ago.

So the research continues. And I will still volunteer to be a guinea pig.

Thanks to all the team involved with the trial. I hope that all their efforts will not be in vain.