A woman woke up convinced she had murdered her husband after contracting an infection from an implant inserted into her brain as part of a clinical trial.
Sharon Martin, 54, saw her world turned upside down when she woke up to find what she thought was a bloody crime scene in July 2021.
She could vividly see blood all over the bedroom, as well as the gun she believed she had shot her husband, Chris, with.
But in reality, there was nothing there and Chris was safe and sound sleeping next to her.
Her screams of fear at what she thought had happened woke up Chris, who was confused as to what was happening.
After being assured that Chris was fine, Mrs Martin sat on the edge of her bed, feeling as if she could see herself being “controlled by a puppet” from above.
Sharon Martin, 54, unable to work after terrifying hallucination caused by clinical trial on her brain
They installed a titanium port delivery system behind his left ear that allowed GDNF, a growth protein, to be delivered directly into his brain tissue.
She was rushed to Southmead Hospital, Bristol, where she was told she had fluid and a cyst on her brain.
Eventually, the source of the problem was revealed to be a titanium implant that Mrs. Martin had had several years earlier, as part of the clinical study to treat her Parkinson’s disease.
Around 153,000 people in the UK suffer from Parkinson’s, a neurodegenerative disease that causes pain, tremors in the limbs and difficulty moving.
Every hour, two more people are diagnosed and the disease costs the NHS more than £725 million a year.
Medications used to treat Parkinson’s, such as levodopa, work by increasing dopamine levels. While they 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, completely stopping her tremors, but the trial was eventually scrapped because the overall results among trial participants were inconclusive.
But at the end of the trial, the system remained in his brain and, in July 2021, an infection occurred.
According to a report seen by the director of research at Parkinson’s UK, the infection had leaked from the port system to the brain.
While in hospital, Mrs Martin, from Rhondda Valley, South Wales, had her entire system removed.
After it caused a rare brain infection, the port delivery system had to be removed in emergency surgery.
She recalls: ‘I woke up around 6am to take 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 was just yelling, ‘Chris, did I shoot you?’
‘I could see everything. I see the flashbacks every day. It’s the last thing I see before going to bed. I’m getting trauma therapy for this now.
‘Every time I see it it’s as vivid as it was and when I look at my husband now I feel guilty.
Symptoms can include uncontrollable tremors, slow movements and muscle stiffness, but experts say they often only appear when about 80 percent of nerve cells have been lost.
Over time the symptoms gradually worsen. It can cause symptoms related to movement, as well as pain, depression and loss of smell, experts say.
“Imagine actually believing that you had done it, that was what I was going through, it was real to me.”
Ms Martin originally took part in the clinical trial in 2014 and said initially the signs were positive and the new treatment acted “like a cure”.
‘The GDNF was delivered in three batches in nine months. It really helped, it was like a cure,” he said.
‘No tremors, my walk was fast, my balance… it was the most surprising thing.
‘The test failed because we could not reach the end point. It had to show a 20 percent difference between all participants in the results and it didn’t.
‘The titanium port was behind my left ear. They would hook up (follow participants) every month and then hook us up to a payload of catheters in our brain.
“They said everything would be fine later.”
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 very afraid.
“Then they sent me to the hospital and they operated on me there. They took away my brain system.
Doctors say Mrs Martin’s “terrible” memory and feeling that she has lost her true self are symptoms of her Parkinson’s disease, but she believes they are due to the infection she suffered.
“Then they told me I had a brain infection with fluid and a cyst on my brain that I was told was inoperable.”
Sharon was told that everything that had happened to her was caused by her brain system.
She said: ‘They have given me a report that says it was from the rehearsals. Parkinson’s research director in the UK told me it was from the port system.
“I haven’t apologized or anything like that; they told me it was part of the trial.”
The whole process has left Mrs Martin with a “terrible” memory and the feeling of having lost her true self.
“I thought I was going crazy,” she said. ‘When people came to see me at the hospital they didn’t know what was real or not.
‘Sometimes I still don’t know where I am; I just go blank at random times.
‘They attribute it all to the progression of Parkinson’s, but I know it’s different. I think the real Sharon disappeared a long time ago.
“It was my decision to do the test, but I thought there would be some kind of treatment afterwards.” Services don’t exist for Parkinson’s.’
Tim Whittlestone, medical director at North Bristol NHS Trust, said: “We are very sorry to hear of this person’s concerns and encourage them to contact us directly so we can properly discuss the issues they have raised.
‘Although we cannot go into details of individual cases, as a research center we are very grateful for all the patients who participate in a clinical trial.
«Without these participants, we would not be able to conduct innovative research. This is especially true in Parkinson’s disease, where our clinical and research teams work tirelessly to search for novel, long-lasting treatments.
‘Unfortunately, some participants will experience a negative consequence of the trial treatment.
‘People who participate in research studies receive very good support and follow-up, often more so than patients who receive treatment outside of a clinical trial.
‘Understanding these negative effects is as important to us as celebrating the positive benefits, so we encourage anyone who is part of a trial and has questions to contact their clinical team, research team or our Liaison Service and Patient Advice. .’
Claire Bale, associate director of Parkinson’s UK research, said: “Sharon took part in a pioneering trial which showed great promise but sadly had a bad experience once it was completed.
‘We sympathize with her and the handful of other participants who had similar results, and have worked closely with the clinical team to support them throughout.
‘The hospital is responsible for the care of participants in clinical trials but, as the main funder of this research and the UK’s leading Parkinson’s charity, we consider it our responsibility to support participants like Sharon.
‘By working with GDNF participants and the clinical team, we have learned lessons that inform all ongoing trials.
“We are grateful to Sharon and everyone involved in vital trials, as without them we would not be able to find better treatments and ultimately a cure for Parkinson’s.”
