'I was told I wouldn't walk or talk — surgery abroad turned my life around'
Jerome Maume (left) and Frances McCann (right) generously shared the stories behind their Parkinson's diagnosis. Picture: Chani Anderson
A remarkable Cork grandmother has revealed how travelling abroad for brain surgery transformed her life 13 years after hearing that a Parkinson's diagnosis would leave her unable to walk or talk.
Two years after undergoing deep brain stimulation (DBS) in the UK, which involves the implanting of electrodes in the brain, Frances McCann is fighting fit and continuing to defy the odds.
She will be among the thousands expected to turn out at this year’s Walk in the Park for Parkinson's Ireland later this month as she marks 15 years since being diagnosed with the the brain disorder.
Parkinson's causes involuntary movements such as shaking, stiffness and balance and co-ordination issues. It affects around 18,000 people in Ireland and is the second most common neurodegenerative condition after Alzheimer’s disease. Symptoms can begin with a small tremor in the hand before growing in severity.
Walk in the Park events will take place in various locations across the country on Saturday, September 21, from 11am to raise vital funds for Parkinson's Ireland. This year’s Cork event will kick off at the Lee Fields.
Frances is taking part in the fundraiser to remind people that there is life after Parkinson's. She is currently mastering everything from Tai chi to set dancing, thanks to activities organised by the Cork branch of Parkinson's Ireland.
The 72-year-old spoke of the new lease of life deep brain stimulation (DBS) has given her and how she hopes new breakthroughs and treatments will help people with Parkinson's. She is urging the public to donate to Parkinson's Ireland to help people diagnosed with the condition and their families.
Two years ago Frances opted to undergo DBS which has considerably improved her balance and allowed her to participate in several Parkinson's Ireland activities.
The procedure involves implanting electrodes within areas of the brain. These are controlled by a pacemaker-like device placed under the skin in the upper chest. A wire running under the skin links the device to electrodes in the brain.
Frances spent the years leading up to this coming to terms with her diagnosis.
“I remember the doctor asking me if I had ever got bad news. I kind of braced myself after that because I knew it was coming. I was told that the outcome would be that I wouldn’t be able to walk or talk. That was very tough. I was just taking every day as it came.
"I wondered at the time how I would be able to cope with the outcome but it has been so different to what I had expected. I do a lot with the group and am even joined the choir so my life is very active.
"I knew very little about Parkinson's before I was diagnosed. Some people know about it because they have a friend or relative with it but I had no experience. There are around 40 different symptoms of Parkinson's and each person will present differently depending on the symptoms they have.”
Frances recalls travelling to the UK for treatment.
“When I had the device fitted all my symptoms improved. I didn’t fall as much and all my symptoms declined. My memory was better and my balance improved.
The grandmother admits she was apprehensive about undergoing surgery.
“There have been people who were suitable but just too scared to go ahead with DBS. I could have run away from the operation but I chose not to. Of course I was still nervous.
"My initial thought was 'nobody is going to be fooling around with my brain'. You hear about all the things that could go wrong and risks of things like brain bleeds and irreparable damage.
"The day I went over, the team explained to me just how straightforward it was going to be. The team had a lot of experience and this put my mind at ease. All of my details were fed into a computer and a robot did most of the operation. I just can’t imagine what he did.”
Frances hasn’t looked back since. The 72-year-old described how she has adapted to life after DBS treatment.
“There are some challenges,” she told the . “Last June I went on a cruise and accidentally left the charger on the ship. The cruise ship were no help. When I tried to get it returned and they simply told me it was with a third party.
"My husband was trying to stress to them how serious the situation was and explained that I needed to charge it every week. They wouldn’t answer our phone calls and we had no success with them at all. My doctor was out of her mind with the thought and increased all the medications to the levels they were at before the operation.
"It would be 11 or 12 weeks before I’d have the charger returned to me. However, we got on to Boston Scientific and they were great to deal with. They loaned me a replacement until I got mine back. We contacted DHL and it was on its way within an hour.”
She hopes that awareness can be raised about the condition.
“I think some people have very different views of Parkinson’s disease and what it’s like to live with. The reality is that no two diagnoses are ever the same. I do my best to stay active. Independence is also very important to me. I have my own car and I’m careful. It’s all about feeling the fear and doing it anyway.”
Jerome Maume from Cork knows this only well, having being diagnosed with the disease shortly before his brother.
“I was diagnosed around 2014 when I was 46. However, I kept it a secret until my 50th birthday,” he told the .
“My mum rang me and said that they thought my brother had Parkinson's. That was when I told my mum that I had been diagnosed four years before. Even though my brother is two years older than me he was diagnosed after me and our symptoms were completely different.
He recalled how the diagnosis gave him a certain degree of closure.
“Waiting for the diagnosis was quite scary. However, I remember being told that you don’t die from Parkinson's, you die with it. It was a small comfort to know that.”
Jerome explains why he initially decided to keep his diagnosis a secret.
“I was afraid of what people would say. I was even more afraid of how people would react. As a lawyer I was worried that it might affect my work. I was coming to terms with my diagnosis and what it meant to have the condition but I was also worried that people would question my competency as a lawyer.
"There was a woman who joined Young Parkinson's Ireland at the same time as me. She hadn’t told anyone about her diagnosis either. We were always the ones at the meeting hiding any time there were photographs being taken.”
He says that his priorities changed during that difficult period.
“Between the ages of 46 and 47 I should have been coming into my prime earning capacity but my priorities changed after that.
The former lawyer says he does everything he can to keep his symptoms at bay.
“Many don’t know what to say when they find out you have Parkinson's. I’ve had people come up to me and tell me that they are sorry but I tell them not to be. I’m doing really well.
"This is probably because of the positive attitude I have and the use I make of what little dopamine I have left in my body by keeping active with exercise and singing and music. I was able to benefit from speech therapy which was what saved my voice.
"I’m grateful that my doctor didn’t just kick me out the door with loads of drugs. There was a lot that helped after my diagnosis.”
Parkinson's Ireland provides a range of services and supports, both locally and nationally to people living with Parkinson's disease, their families and carers. Their work includes raising awareness of the condition.
They also provide information and advice, and an advocacy service for those affected by the disease. The organisation also has a focus on research.
To find out more about the Walk in the Park for Parkinson's visit parkinsons.ie.
