Taking part in a Parkinson’s UK Clinical Trial

Taking part in a Parkinson’s UK Clinical Trial as a volunteer: Colin Williams’ experience

Colin Williams has a long and honourable history of helping others.  From an unassuming start in life as a miner in the South Wales coalfields, he graduated from the London School of Economics and then achieved a Masters degree at Bryn Mawr in Philadelphia, Pennsylvania, USA.  Colin has had a long and successful career as a Community Organisations Social Adviser.  He has worked with many charities, including the Princess Royal Trust for Carers.

Five years ago he lost his wife, having been her carer throughout a long and difficult struggle with cancer.  And, at 75, Colin was diagnosed with Parkinson’s. 

Colin explained that he attended the first meeting to discuss the set up of the Parkinson’s UK Research Interest Group (RIG) in Glasgow, but had to leave early. He mentioned that he was very experienced in organising projects and would be chair if no-one else wanted to – he  was pleased to find that his offer had was accepted in his absence!

This modest man has, in the last year, also volunteered to take part in a Parkinson’s UK clinical trial run by Professor Doreen McClurg.  “I hadn’t considered joining a clinical trial – my consultants and the hospital staff asked me about six months ago.  I said yes as a thank-you for all their support and care”

The Trial*: Stimulation of the Tibial Nerve: a protocol for a multicentred randomised controlled trial for urinary problems associated with Parkinson’s disease.   This is  a technique that has shown benefits with Stroke patients. The idea, using a nerve stimulation technique of electrical impulses from a TENS-type device on the user’s ankle, is an intriguing one. The trial with PwP volunteers was “double-blind” so the subjects did not know if they were using a real device or a placebo version. Colin explained that he has been having increasing, intermittent, issues with bladder control. He has had two ops to treat benign prostate issues. 

The trial involved using the device, and maintaining a daily diary of bladder activity, over a six week period.  Colin is full of praise for the medical staff, particularly the guidance and care from Susan Stratton.  He found the need to keep the diary challenging and requiring “real discipline”, particularly as he noticed a worsening of his condition whilst recording it. His consultant put him on a “bladder-calming” medication which was effective straight away. 

Colin has not yet heard about the results of the trial.  He assumes that this is another side-effect of the Coronavirus lockdown.

So, please think about taking part in a study or a  trial – lots of information at https://www.parkinsons.org.uk/research/get-involved-research

And to learn more about bladder problems in Parkinson’s and this trial: https://medium.com/parkinsons-uk/bladder-problems-in-parkinsons-ask-the-expert-6285bd5a4af3   

The trial was planned and run by Professor Doreen McClurg and her Trial Manager Susan Stratton, at Glasgow Caledonian University. The trial is funded by Parkinson’s UK and The Dunhill Medical Trust.  The plan was for 205 volunteers UK-wide, their response using the Parkinson’s UK Research Network was so good that they recruited 240 participants.  The trial is now closed, the data analysis is ongoing, with initial results planned to be published late 2020 or early 2021.