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Bryn’s brave bid to beat Parkinson’s disease

Bryn Williams.

Bryn Williams.

A courageous man with Parkinson’s disease is taking part in pioneering research which could help to find a treatment for the condition.

Bryn Williams (42) was diagnosed when he was 36 and within months he had created the Wobbly Williams website to offer hope, information and support to others and set up a fundraising charity - Funding Neuro.

He is one of 30 patients in the trial which is being conducted by neurosurgeon Professor Steven Gill, based at Bristol’s Frenchay Hospital.

This involved a death-defying operation which saw robots drill into his head so tubes could be placed in his brain.

The research aims to find out the effect of delivering the protein Glial Cell Line-Derived Neurotrophic Factor directly into the brain through tubes.

Fifteen patients will receive a placebo while the others will be given the drug - to discover whether the specially designed delivery port could help improve symptoms such as stiffness, slowness of movement and tremors.

Bryn had three detailed brain scans to take precise measurements to enable four tubes to be inserted into his brain last December in a five and a half hour operation.

He said: “There is a one in 100 death rate from this operation but Professor Gill has carried it out 1,000 times and never had an incident due to all the planning he does.

“I knew there was a risk involved but to be honest I’d bite your hand off for the chance of another five years.

“A robot drilled the holes in my head and a catheter was placed down them and steered into position.

“If it works I will recover a bit. The way I’d explain it to be easily understood is that part of my brain is dying like a plant that hasn’t been watered while you are on holiday.

“This drug, if it works, is similar to when you return from holiday and water your plants again - some of them will revive but others have already died - in the same way some of my brain could be rescued.”

From March this year Bryn will travel to Bristol every four weeks so that the drug or placebo can be delivered to his brain and it will be immediately apparent if it helps.

The study will take place over nine months.

Despite the fact that Bryn now struggles to walk more than quarter of a mile because his legs begin to give way underneath him, he plans to climb a 21 ft peak (Mera) in the Himalayas next February as he says he’s noticed his physical deterioration becoming more rapid without having a goal to work towards.

He added: “Parkinson’s won’t stop me.

“My determination to beat this illness grows each year although my ability to move decreases and I suffer more injuries when I run now.

“I’m beginning to stiffen up - it’s as though I’m slowly being encased in concrete.

“I’m kind of finished with Parkinson’s now and I’m hoping this treatment works because I don’t have the energy to search for another cure.

“If this works at least it’s all been worthwhile and I can say it’s a job well done.”

Over the years, Bryn and his supporters have donated £716,000 to Parkinson’s charities, and a team of 27 raised £110,000 by trekking up Mount Kilimanjaro in January 2012 which went to Funding Neuro.

Bryn, a patent lawyer, lives with his wife Vicky and two daughters Ella (11) and Rebecca (9) in Bearsden.

 

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