Parkinson’s disease patient trapped by his own body until new treatment in Ireland sets him free

For the past two years Daniel McGinty has been tormented, almost chained like a prisoner in his own body by Parkinson’s disease.

He was diagnosed just over 10 years ago in his mid-thirties and eventually reached a point where he remained frozen for periods, often confined to a chair and rarely able to leave his home in Letterkenny.

In the beginning, the drugs worked wonders. His sister Bernie Higgins said that at first few people would have noticed he had Parkinson’s disease, but over time the impact of the medications lessened.

Daniel’s quality of life deteriorated. Even eating was a struggle because food reduced the respite his medication gave him.

“That meant Danny would starve himself all day and eat late at He could have a bit of veg during the day or a bit of fruit but not a full meal so it was awful,” Bernie said.

Over the past few years, Daniel’s independence has slowly eroded and he has increasingly relied on the support of his family. He was unable to work, and even the tasks he did at home, such as driving his mother to the shops or going out for a walk, became impossible.

Bernie and his brothers Patrick and Liam cared for him. Although Daniel clearly appreciated their help, he wanted to live his life without relying on others.

Daniel paints a portrait of a man who was essentially trapped in his own body for parts of the past two years when his condition was at his worst. Sometimes his phone would ring and he would pick up to answer but find himself unable to speak.

“Sometimes I couldn’t sleep at night,” he added.

“I had my jaw stuck towards the end [of my time on the medication]. I remember having leg cramps and lying on the floor, but maybe the tablet wasn’t working and you couldn’t get up. I had to sleep on the sofa, because if I had to get up during the night, I couldn’t walk up and down to the bed.

“The drugs had some impact, but very little. There are also side effects. You can get paranoid and I’ve definitely had a bit of that. You might hallucinate.

“Sometimes it felt like your brain was trapped inside your body, not paralyzed but close to it.”

Prof Richard Walsh, a consultant neurologist at Mater Hospital and the Dublin Neurological Institute, said Daniel ran into the typical complications of drug therapy for early-onset Parkinson’s disease.disease, with erratic and unreliable responses and increased involuntary movements.

By the middle of last year, Daniel’s condition had deteriorated so badly that he was taking around 20 pills a day just to get moments of relief from doing simple tasks.

Something had to change to give him a quality of life. He had this chance at the end of last year.

Due to his age and the fact that he was diagnosed so young, Daniel was considered an ideal candidate for deep brain stimulation (DBS) — a treatment for patients with movement disorders such as Parkinson’s disease dit’s a disease.

The surgery sees electrodes inserted into a targeted area of ​​the brain using magnetic resonance imaging (MRI) and recordings of brain cell activity.

A pulse generator battery, similar to a pacemaker, is placed in the patient’s chest and delivers electrical impulses to a part of the brain involved in motor function.

Those undergoing DBS surgery are given a controller to turn the device on or off. The catch for Daniel was the treatment was not available here.

For many years Ireland referred between 12 and 15 patients a year to the UK for DBS. This usually meant that patients with significant disabilities had to make multiple trips to Bristol or London for pre-operative assessments, surgery, post-operative battery scheduling and subsequent follow-up visits. For Daniel, it was hard enough to get to Dublin for any treatment, let alone boarding a plane.

Clinical Director of the Dublin Neurological Institute, Professor Tim Lynch, has spent 20 years campaigning to make the treatment available in Ireland. Last year, Daniel became the first patient to undergo it here.

Professor Walsh said: ‘For patients like Daniel, where oral administration of medication no longer provides an adequate quality of life, DBS is able to provide a benefit similar to medication but on a 24 hour basis. that offers predictability and reliability in terms of freedom of movement.

Daniel was operated on at Beaumont Hospital by consultant neurosurgeon Ms. Catherine Moran. She worked alongside Professor Walsh and a team of doctors, nurses, physiotherapists and specialists from Beaumont and Mater Hospitals to prepare Daniel and care for him afterwards.

“I chose him as one of the first cases because of the severity of his symptoms,” Ms Moran said.

“The operation takes about seven hours. We use many new software techniques to image nuclei deep within the brain because the targets we are looking to hit with the electrode are small.

“It’s about 8cm into the brain and the target is about 7mm by 3mm. So we use a robot that helps with precision to give us a trajectory.

Daniel said the change since then has been remarkable. He walks 5-10 km almost every day and at one point he completely stopped taking his medication.

However, Professor Walsh asked him to take half a tablet three times a day as it is unusual for DBS patients to go without certain medications.

Professor Walsh and Ms Moran highlight DBS is not a cure for Parkinson’s disease, but point out that it has huge benefits. Seven patients have had the procedure since Daniel had his and it is hoped that around 24 people will be treated in total this year.

Daniel credits her for giving him his life back.

“It’s amazing what has happened since then,” he said.

“I more or less came back from the dead.”

About Antoine L. Cassell

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