Woman woke up at ‘bloody crime scene’ convinced she had killed her husband, due to hallucinations from rare brain infection caused by ‘groundbreaking’ clinical trial
A woman woke up convinced she had killed her husband after contracting an infection from an implant inserted into her brain as part of a clinical trial.
For Sharon Martin, 54, her world was turned upside down when she woke up to what she thought was a bloody crime scene in July 2021.
She could clearly see blood everywhere in the bedroom, as well as the gun she thought she used to shoot her husband, Chris.
But in reality there was nothing, and Chris was safe and sound, sleeping next to her.
Her screams in fear of what she thought had happened woke Chris, who didn’t know what was happening.
After being reassured that Chris was fine, Mrs Martin sat on the edge of her bed, feeling as if she could see herself ‘controlled by a doll’ from above.
Sharon Martin, 54, is unable to work after a terrifying hallucination experience caused by clinical tests on her brain
She had a titanium port delivery system installed behind her left ear that allowed GDNF – a growth protein – to be delivered directly into her brain tissue
She was rushed to Southmead Hospital in Bristol where she was told she had fluid and a cyst on the brain.
It was eventually revealed that the cause of the problem was a titanium implant that Ms Martin had received several years earlier as part of the clinical pathway to treat her Parkinson’s disease.
Around 153,000 people in Britain have Parkinson’s, a neurodegenerative condition that causes pain, tremors in the limbs and movement problems.
Two more people are diagnosed every hour and the disease costs the NHS more than £725 million a year.
Drugs used to treat Parkinson’s, such as levodopa, work by increasing dopamine levels. While these can keep symptoms at bay for years, they can also have side effects.
Sharon’s implant, installed behind her left ear, was a delivery system that allowed GDNF – a growth protein – to be delivered directly into her brain tissue.
Initially it worked wonders for Sharon, stopping her tremors completely, but the trial was eventually scrapped because the overall results of the trial participants were inconclusive.
But at the end of the process, the system remained in her brain and an infection developed in July 2021.
According to a report from the director of research at Parkinson’s UK, the infection leaked from the portal system into the brain.
While in hospital, Mrs Martin, from Rhondda Valley, South Wales, had the entire system removed.
After it caused a rare brain infection, the port delivery system had to be removed during emergency surgery
She recalled: ‘I woke up around 6am because of my medication, but I thought I had killed my husband.
“I saw his body, the gun, the blood – it looked like something out of a movie.
“I just screamed, ‘Chris, did I shoot you?’
‘I could see everything. I see the flashbacks every day. It’s the last thing I see before I go to bed. I now have trauma therapy for it.
‘Every time I see it it’s as vivid as it was and when I look at my husband I now feel guilty.
Symptoms can include uncontrollable tremors, slow movements and muscle stiffness, but experts say these often don’t occur until about 80 percent of the nerve cells have been lost.
Over time, the symptoms gradually get worse. It can cause symptoms related to exercise, as well as pain, depression and loss of smell, experts say
“Imagine actually believing that you did it, that was what I went through – it was real for me.”
Ms Martin originally took part in the clinical trial in 2014 and said the signs were initially positive and the new treatment worked ‘like a medicine’.
‘GDNF was delivered over three batches of nine months. It really helped; it was like medicine,” she said.
‘No tremors, my walking was bad, my balance – it was the most amazing thing.
‘The trial failed because we couldn’t reach the end point. It was supposed to show a 20 percent difference between all participants in the results, but that didn’t happen.
‘The titanium port was behind my left ear. They stopped every month (participants on the trail) and then they hooked us up to a load of catheters for our brains.
“They said everything would be fine after that.”
But after her ordeal in 2021, Sharon was left wondering what went wrong.
She said: ‘My Parkinson’s doctor told me he thought I had a brain tumour. I remember looking at my husband and feeling very scared.
‘They then sent me to the hospital and I had surgery there. I had the system removed from my brain.
According to the doctor, Mrs Martin’s ‘terrible’ memory and feeling that she has lost her true self are symptoms of her Parkinson’s disease, but she believes these are due to the infection she has contracted
“Then they told me I had a fluid brain infection and a cyst in my brain that they said was inoperable.”
Sharon was told that everything that had happened to her was caused by the system in her brain.
She said: ‘They made a report on me saying it came out of the trials. The research director at Parkinson’s UK told me it came from the port system.
“I haven’t had any apology or anything. I was told it was part of the process.”
The whole process has left Ms Martin with a ‘terrible’ memory and a feeling that she has lost her true self.
“I thought I was going crazy,” she said. ‘When people came to see me in the hospital, I didn’t know what was real or not.
‘Sometimes I still don’t know where I am, I just disappear at random moments.
‘They all put it down to the progression of Parkinson’s, but I know it’s different. I think the real Sharon is long gone.
‘It was my choice to do the test, but I thought there would be some form 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 person’s concerns and would encourage her to contact us directly so that we can address the issues she raises can be investigated appropriately.
‘Although we cannot comment on the details of individual cases, as a research center we are very grateful to all patients who participate in a clinical trial.
‘Without these participants we would not be able to deliver groundbreaking research. Nowhere is this more true than in Parkinson’s disease, where our clinical and research teams work tirelessly to find new and sustainable treatments.
‘Unfortunately, some participants will experience negative consequences from a trial treatment.
‘People in research studies are very well supported and monitored, often more so than patients treated outside a clinical trial.
‘Understanding these negative effects is just as important to us as celebrating the positive benefits and that’s why we encourage anyone who is part of a study and has any concerns to contact their clinical team, research team or our Patient Advice and liaison service. .’
Claire Bale, Associate Director of Research at Parkinson’s UK, said: ‘Sharon took part in a ground-breaking study that showed promise, but unfortunately she had a bad experience afterwards.
‘We sympathize with her and the handful of other participants who had similar results, 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 as the UK’s leading Parkinson’s charity, we see it as our responsibility to support participants like Sharon.
“By working with the GDNF participants and the clinical team, we have learned lessons that form the basis for all ongoing research.
‘We thank Sharon and everyone participating in crucial studies, because without these treatments we would not be able to find better treatments and ultimately a cure for Parkinson’s.’