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Back from the dead Parkinson’s patient imprisoned in his own body says new treatment has set him free

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Daniel McGinty and his sister Bernie Higgins. Photo: Joe Dunne

Daniel McGinty and his sister Bernie Higgins. Photo: Joe Dunne

Daniel McGinty and his sister Bernie Higgins. Photo: Joe Dunne

For the past couple of years Daniel McGinty has been tormented, almost shackled as a prisoner in his own body by Parkinson’s disease.

He was diagnosed just over 10 years ago in his mid-30s and eventually reached a point where he was left frozen stiff for periods, often confined to a chair and seldom able to leave his home in Letterkenny.

Initially medication worked wonders. His sister Bernie Higgins said in the beginning not many people would have noticed he had Parkinson’s, but over time the impact of the medication diminished.

Daniel’s quality of life deteriorated. Even eating was a struggle because food reduced the reprieve his medication provided.

“It meant Danny would starve himself all day and then eat late at night. He might have a bit of veg during the day or a bit of fruit but not a full meal, so that was horrible,” Bernie said.

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

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

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

“Sometimes I wouldn’t be able to sleep at night,” he added.

“I was getting jaw jamming towards the end [of my time on the medication]. I remember getting cramps in my legs and lying on the floor, but then the tablet might not work so you wouldn’t be able to get back up.

"I had to sleep on the sofa, because if I had to get up during the night I couldn’t get up and down to the bed.

“The medication had some impact but very little. There are side effects to it too. You can get paranoid and I definitely had a bit of that. You could hallucinate.

“Sometimes it was like your brain was trapped in your body, not paralysed but close to it.”

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

By the middle of last year Daniel’s condition had deteriorated to such an extent that he was taking about 20 tablets a day just to get moments of relief to do simple tasks.

Something had to change to give him quality of life. He got that chance late last year.

Because of his age and having been diagnosed so young, Daniel was seen as an ideal candidate for Deep Brain Stimulation (DBS) — a treatment for patients with movement disorders such as Parkinson’s disease.

The surgery sees electrodes inserted into a targeted area of the brain using Magnetic Resonance Imaging (MRI) and recordings of brain cell activity.

An impulse generator battery, which is similar to a pacemaker, is placed in the patient’s chest and provides electrical impulses to a part of the brain involved in motor function.

Those who undergo 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 has been referring between 12 and 15 patients a year to the UK for DBS. Usually this meant patients with a significant disability had to make multiple journeys to Bristol or London for pre-operative assessments, surgery, post-operative programming of the battery and subsequent follow-up visits. For Daniel, it was already arduous to travel to Dublin for any treatment, never mind 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.

Prof Walsh said: “For patients like Daniel, where the oral administration of medicine no longer provides adequate quality of life, DBS is able to provide a similar benefit to the medicine but on a 24-hour basis which provides predictability and reliability in terms of freedom of movement.”

Daniel was operated on in Beaumont Hospital by consultant neurosurgeon Ms Catherine Moran. She worked alongside Prof Walsh and a team of doctors, nurses, physiotherapists and specialists from Beaumont and the 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 surgery takes about seven hours. We use a lot of new software techniques to image nuclei deep within the brain because the targets we are looking to hit with the electrode is small.

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

Daniel said the change since has been remarkable. He walks 5k to 10k most days and at one point he was off his medication completely.

However, Prof Walsh has asked him to take half a tablet three times a day because it is unusual for DBS patients to go without some medicine.

Prof Walsh and Ms Moran stress DBS is not a cure for Parkinson’s, but underline it has huge benefits. Seven patients have undergone the procedure since Daniel had his and it is hoped about 24 people will be treated in total this year.

Daniel credits it with giving him his life back.

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

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

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