Sharon Martin felt as though she was watching herself from above being “controlled by a puppet”
A WOMAN woke up convinced she’d murdered her husband after contracting a rare brain infection following a clinical trial.
Sharon Martin, 54, had her world turned upside down when she saw what she thought was a bloody crime scene in July 2021.
She could vividly see blood all over the bedroom and the gun with which she thought she had shot her partner, Chris.
But there was nothing there, and Chris was sound asleep.
Her screaming in fear of what she thought had happened roused Chris, who was “confused” about what was happening.
After being reassured that Chris was okay, Sharon sat on the edge of her bed, feeling as if she could see herself from above being “controlled by a puppet.”
She was rushed to Southmead Hospital, Bristol, where she was told she had fluid and a cyst on the brain.
Seven years earlier, Sharon underwent 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 which connected to a catheter, where she had monthly injections of GDNF – a growth protein.
Initially, it worked wonders for Sharon, completely stopping her tremors.
But the trial ultimately failed because the results were inconclusive.
The system was left in her brain, and seven years later, in July 2021, the infection took hold.
According to a report seen by the research director of Parkinson’s UK, the infection had been leaking from the port system into the brain.
While at the hospital, Sharon had the entire system removed but says she has never received an apology.
Sharon, from Rhondda Valley, 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.
“Imagine really believing you had done it, that was what I was going through – it was real to me.”
CLINICAL TRIAL
Sharon, who is currently unable to work, took part in the clinical trials in 2014 in an attempt to find a cure for her Parkinson’s.
She said: “We had to have a delivery system implanted in our brain.
“Parkinson’s is right in the deep part of your brain.
“GDNF was implanted over three lots of nine months – a growth protein.
“It really helped – it was like a cure.
“No tremors, my walking was better, my balance – it was the most amazing thing.
“The trial failed because we couldn’t get to the end point – it had to show a 20 per cent difference across all participants in results and it didn’t.
“The titanium port was behind my left ear – they would plug us in each month, and then hook us up to a load of catheters to our brain.
“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.
“I remember looking at my husband and feeling really afraid.
“They then sent me to Southmead Hospital, and I had surgery there.
“I had all the drugs and the system removed from my brain.
“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.
“It wasn’t the best time of my life – it was like they didn’t believe me when I described what happened.”
Sharon was told that everything that had happened to her was caused by the system in her brain.
She said: “They’ve done a report on me that says it was from the trials.
“The research director from Parkinson’s UK told me it was from the port system.
“I’ve not had any apology or anything – I’ve been told it was part of the trial.”
‘STILL BLANK OUT’
The whole process has left Sharon with a “terrible” memory and a feeling that she has lost her true self.
“I thought I was going mad,” she said.
She added: “When people came to see me in hospital I didn’t know what was real or not.
“Sometimes now I still don’t know where I am – I just blank out at random moments. 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 services are not there for Parkinson’s.”
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, added: “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.”