Mum tells of hope for future after Parkinson’s Disease treatment trial
Ileene Byrne volunteered for the project in the hope of experiencing again what life was before she became ill.
The 55-year-old from South Shields, who worked as a CID officer in Sunderland, had to have a port put into the side of her head to administer the drug - and had to go through the procedure a second time after the first became unusable due to a complication.
After going through the placebo round, Ileene was given an infusion of the GDNF - naturally-occurring protein - which is delivered directly to the brain using four tubes placed into the head - and her symptoms were brought to a standstill by the treatment.
She said: “I was adamant I was going to get this new drug. I wanted to get back into my high heel shoes.
“I was in so much pain, and in the second half of the trial I got it.
“When I was given it, I thought ‘my God’. At the time I couldn’t walk and I had to crawl across the floor to get to my medicine, and trying to get dressed took hours. I couldn’t get my shoes on because of the spasms.
“But with this, I got out of my wheelchair and into my shoes.”
Since the trial ended, Ileene has not been given any further doses of the drug and is back on her previous medication.
She added: “I saw a glimmer of what my life was like prior to Parkinson’s, but I had a brain infection.
“I hope they will find that by administering the drug to the area of brain that needs it, this will get through and be used. “It’s a very invasive procedure, but I hope it happens, because we need it.”
The results of the multi-million pound study, which featured 41 patients, aimed to look at whether boosting the levels of the protein can regenerate dying brain cells in people with Parkinson’s and even reverse the condition.
The trial was funded by Parkinson’s UK with support from The Cure Parkinson’s Trust and run in association with the North Bristol NHS Trust, with further research planned.
Ileene, who is married to fellow retired police officer Sheldon, 59, and has a 16-year-old son, and also worked as a registered nurse during her working career, was diagnosed with the disease on Valentine’s Day in 2002.
It came after she had symptoms including a spasm in her left leg and a feeling she was becoming flat-footed.
She said: “I deteriorated quite rapidly with the shakes and spasms and I couldn’t get into the shower because of the number of actions it needed, the process which went into thinking about how to get in and out, it was such a change in my own body.
“Psychologically, it was devastating because I thought it was going to take away my future and my career. It had such a profound affect.
She added: “It affected my memory, my speech, and I was prepared to try anything which would work. I started to research this drug because I’d heard about it.”
More about the trial can be found via www.parkinsons.org.uk/research/clinical-trial-gdnf.