Sharon Martin developed an infection after a clinical trial (Picture: Sharon Martin/SWNS)
A woman woke up seeing blood all around the room convinced she had killed her husband – but it was down to a rare brain infection.
Sharon Martin, 54, could see a crime scene including a gun, and immediately thought she had shot husband Chris.
He was actually sleeping as normal, and her screaming woke him up.
After being reassured that he was OK, Sharon sat on the edge of her bed feeling as if she could see herself from above being ‘controlled by a puppet.’
She went to hospital in Bristol where she was told she had fluid and a cyst on the brain, which was causing the alarming symptoms in July 2021.
Seven years earlier in 2014, Sharon had been part of clinical trials on her brain to test the effects on her Parkinson’s condition.
She had a titanium port delivery system put into her brain behind her left ear connected to a catheter, where she had monthly injections of GDNF – a growth protein.
Initially, it worked wonders as her tremors completely stopped, but the trial ultimately failed as the results were inconclusive.
Sharon Martin after she had titanium port removed (Picture: Sharon Martin/SWNS)
The ‘true Sharon is long gone’, she said (Picture: Sharon Martin/SWNS)
The system was left in her brain and an infection took hold and started leaking from the port system into her brain, as per a report seen by the research director of Parkinson’s UK.
While at hospital Sharon had the entire system removed, but she says she has never received an apology.
Sharon, from Rhondda Valley in South Wales, said: ‘I woke up about 6am for my medication but I thought that I’d killed my husband.
‘I saw his body, the gun, the blood – it was like something out of a film. I was just screaming “Chris, have I shot you?”
‘I could see everything. I see the flashbacks every day. It’s the last thing I see before I go to bed. I’m having trauma counselling for it now.
‘Every time I see it it’s just as vivid as it was and when I look at my husband I feel guilty now.’
Explaining the clinical trials, she said: ‘Parkinson’s is right in the deep part of your brain.
‘GDNF was implanted over three lots of nine months – it’s a growth protein.
She took part in the clinical trial for her Parkinson’s (Picture: Sharon Martin/SWNS)
‘It really helped – it was like a cure. No tremors, my walking was batter, my balance – it was the most amazing thing.
‘The trial failed because we couldn’t get to the endpoint – it had to show a 20% difference across all participants in results and it didn’t.
‘They said it would all be fine afterwards.’
But after her ordeal in 2021, Sharon was left wondering what had gone wrong.
She said: ‘My Parkinson’s doctor told me he thought I had a brain tumour.
‘Then they told me I had a brain infection with fluid and a cyst in my brain that they told me was inoperable.
‘All the system was removed but no one has ever said that the fluid and cyst has gone – I’ve got no idea.
Sharon added: ‘I thought I was going mad. When people came to see me in hospital I didn’t know what was real or not.
‘My memory is terrible.
‘They put it all down to the progression of Parkinson’s, but I know it’s different.
‘I think the true Sharon is long gone.
‘It was my choice to do the trial but I did think there was going to be some sort of aftercare.’
The NHS and Parkinson’s UK responded
Tim Whittlestone, chief medical officer at North Bristol NHS Trust, said: ‘We are very sorry to hear about this individual’s concerns and would encourage her to reach out to us directly so we can appropriately look into the issues she has raised.
‘Whilst we cannot go into the specifics of individual cases, as a research centre we are very grateful for all patients who participate in a clinical trial.
‘Without these participants, we would be unable to deliver ground breaking research. This is nowhere more true than in Parkinson’s Disease where our clinical and research teams are working tirelessly to seek novel and enduring treatments.
‘Unfortunately, some participants will experience a negative consequence from a trial treatment.
‘People in research studies are very well supported and monitored, often more so than patients being treated outside of a clinical trial.
‘Understanding these negative effects is just as important for us as celebrating the positive benefits and so we encourage anyone who is part of a trial, and has concerns, to reach out to their clinical team, research team or to our Patient Advice and Liaison Service.’
Claire Bale, associate director of research at Parkinson’s UK, said: ‘Sharon took part in a pioneering trial which showed real promise, but she unfortunately had a bad experience after it ended.
‘We sympathise with her and the handful of other participants who had similar outcomes, and we have worked closely with the clinical team to support them throughout.
‘The hospital is responsible for the care of clinical trial participants but, as a major funder of this research and leading UK charity for Parkinson’s, we see it as our responsibility to support participants like Sharon.
‘Working with the GDNF participants and the clinical team, we have learnt lessons which inform all ongoing trials.
‘We thank Sharon and all who take part in vital trials as we would be unable to find better treatments and ultimately a cure for Parkinson’s without them.’
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