“We all have to die one day. I’m not ready yet’

Leo (pictured with daughter Kate) considers motivation to be his most powerful weapon against Parkinson’s disease. He even hopes to get his pilot’s license back to fly hot air balloons again.

The confirmation of the early onset of Parkinson’s disease, at least initially, was a strange relief for Skryne resident Leo Forde. It took two years to bed wondering why some of the basic tasks of daily living had slowly become more difficult. Now, emerging after 18 months in cocoon and a deep brain stimulation procedure, the Killeshandra native has been given a new lease of life

Leo Forde remembers how accurately he received his diagnosis. The atmosphere in the room immediately deflated as the phrase faded, and the doctor, trained to deliver such news, never broke eye contact. The idea occurred to Leo that he should probably listen to what the doctor was saying now.

“Do you have someone with you? Asked the doc, sitting in front of a typical light gray ergonomic desk.

“My wife …” Leo replied.

“Maybe you should have it,” the doctor said.

When Fionnuala arrived, there was no muffled voice, nor too much elaboration. She squeezed her husband’s hand firmly, her wedding ring pressing firmly to the touch. “She was more shocked than I was,” said Leo, for whom there was no immediate sign or omen that his world was falling apart.

Instead, the confirmation of the early onset of Parkinson’s disease, at least initially, has been a strange relief. If anything, it put two years of worry to bed as some of the basic tasks of daily living had slowly become more difficult.



An avowed “car enthusiast”, it was around 2015 that Leo first noticed that “something was going on”.

The Killeshandra native, who has made Skryne his home for the past decades, was polishing one of the many ‘prides and joys’ – a red Porch 911 from 1983 – when his fingers started to lock.

“I should use my other hand to try to close them,” Leo recalls.

At the time, there were no dark clouds on the horizon other than the threat of rain.

Owner of a successful Dunshaughlin-based water services business that counts Diageo, Glanbia, Coca Cola and Meath Co Council among a long list of established clients, and with a young family, Leo was in a “good” place.

Although Leo’s own sports days ended on the floating concrete surfaces of the handball lanes at St Patrick’s College in Cavan, the middle-aged father led an “active life” – between chasing his children to games. , working outdoors and with his hands, or running has his lifelong passion for hot air balloons.

This is why the locking of the hand, and other small “problems” such as inexplicable lethargy, weighed so heavily on his mind.

Leo Forde Iives Skryne and runs his business, Leo Forde Water Services, from Dunshaughlin Business Park.

Then there was the “tremor”. Leo’s leg shook whenever he was stressed – not enough to be rated on the Richter scale, but enough to start having a seismic impact on his otherwise unwavering self-confidence.

“I thought maybe it was just age, a touch of arthritis, or a stuck nerve,” Leo says of his early observations. Like so many men, he delayed going to the GP, ignoring the symptoms until he couldn’t anymore.

When an appointment was finally made, Leo’s GP pointed out the possibility that it was “just my nerves.”

For nearly two more years, Leo would wonder the cause of this “mysterious disease” which was dedicated to thwarting his usual vigor. It was only after a chance meeting with a former colleague, who had been diagnosed years earlier with Parkinson’s disease, that Leo asked for a referral.

“I don’t have a ‘parkinsonian gait’, that’s how she kept saying it. It was just my nerves, blah blah blah! But I knew it wasn’t that. I knew something was up, ”he said.

It took Hospital consultant Mater evaluating Leo less than 10 minutes to come to his conclusion and send him in for further testing.

Leo and his daughter Kate.

Much of the account was shaped during the slow walk to the consultant’s office. From the front desk, down a staircase and along a short, sterilized hallway, the moment they stumbled upon a door with a name typed in brass, littered with letters after, Leo knew the news “was wrong. not be good “.

“I thought I had a brain tumor, and god knows what else,” says Leo, who tried to prepare by researching possible outcomes online. Under Parkinson’s, the comeback was row after row of tottering seniors. “You know each other, if you type your worries into the old Google Doctor, you’ll either end up dead or pregnant.”

Said Leo, establishing a point of pathos, both accepting and resigned: “So that’s the sceal,” he added.

Scéal eile is what came after.

What Leo didn’t know – and still doesn’t know – is what the future holds.

In the process, reality has set in, and lasts. Leo was haunted by a series of replayed images. In a wheelchair. Blankets on the knees. Relatives upset. Even death.

Léo and Fionnuala. The Skryne man has a passion for ballooning.

For a still relatively young Leo, he had suddenly been diagnosed with an “elderly disease” – an illness that had made him slow down, lose his balance and knock on doors, be forgetful.

Symptoms

There are dozens of symptoms associated with Parkinson’s disease, ranging from changes in behavior and problems sleeping, to depression and memory difficulties, as well as fatigue and muscle stiffness.

Physical complications often start on one side of the body and can stay there worse, even when they affect both sides.

When Leo was driving, for example, his left foot would cramp and his toes would “curl” painfully.

Another Parkinsonian quirk is urinary urgency. “I was driving and suddenly I had to turn to the side of the road. Lots of bad dreams too, nightmares that left me in a cold sweat.

“The kids got scared when this first happened. They didn’t know what the outcome would be, not for me, not what we were up against as a family. You hate to see it happen, but it’s beyond your control.

It was depression, although associated with Parkinson’s disease, that Leo feared the most.

At worst, he started visiting Niamh Fitzpatrick, psychologist and sister of 116 Rescue Captain Dara Fitzpatrick who tragically lost her life when the Irish Coast Guard helicopter crashed off the coast of Mayo in March 2017. Dara and Niamh’s father is from Cootehill and the family still has ties there.

“She helped me a lot,” recalls Leo, who then started seeing another specialist, Sarah Cassidy in Athboy. “Without putting a dent in it, they saved my life.”

More than anything, Parkinson’s disease had shaken the confidence of a man accustomed to the daily attention of top executives.

“My self-confidence is completely gone,” Leo said, stopping to let his dog out. A cross between a Labrador and a Springer Spaniel, Leo shares that there are “little beauty” days, “Mollie” still cannot understand why her owner is not as mobile as before.

“I didn’t want to be standing in front of people who were shaking and shaking. It affected everything – my professional life, my family life, my mood. “

But Dr Cassidy, founder of the Smithsfield Clinic, brought Leo back to thinking “on the right path.”

“She made me think about my four children, how much they mean to me, my wife, who has always been there every step of the way. She brought me back to where, yes I have this disease, but no, I won’t let her define me or define who I am.

Parkinson’s disease is mainly managed with medication and a combination of physical activity.

Containment retreat

2020, a year of turmoil for many, has turned into a time of learning, soul-searching, and contentment for Leo.

Leo’s consultant had texted him a salutary warning: “Stay out of traffic. “

That’s what Leo did, building an oak barn with his son, and spending lunchtime in good weather resting with his family, sizzling sausages on the barbecue and watching the condensation. on his beer fall like the seconds of a clock.

“[Covid and the accompanying lockdown] moved me in my life from where I had been in a bad place, to a very good place. You can’t put a price on the time spent doing things like this.

Processing

However, there were still challenges ahead. Six months later, Leo was shaking so much that his doctor immediately recommended him as a candidate for deep brain stimulation (DBS).

A confessed “devil” on social networks, Leo had shared a video of his tremors on Twitter. In 24 hours, the clip racked up several thousand views.

“You can only joke so much. I would also be embarrassed to meet people, try to put my hand in my pocket, or shake keys to distract myself from my shaking hand. Then your leg would start, so there’s a lot of social anxiety to deal with. “

In June of this year, Leo was on a plane with his eldest daughter Kate to London where a surgeon was placing thin metal wires to deliver electrical impulses to the part of her brain responsible for the movement.

While transformative for some, DBS is certainly not for everyone.

Fortunately, it worked for Leo.

Within 24 hours of his release, Leo was sitting drinking a pint with his surgeon at the Scarsdale Tavern in upscale Kensington. “It was absolutely surreal,” recalls Leo, who believes the procedure gave him “a new lease of life.”

Leo, a twin identical to his brother Aaron, observes, “I wouldn’t say I’m as fit as a 56-year-old should be, but I’m much better than I could be. [had it not been for DBS]. No tremors. Smoother walk.

Leo considers his motivation to be his most powerful weapon against Parkinson’s disease. He even hopes to get his pilot’s license back to fly hot air balloons again.

When asked what advice he would give now to someone recently diagnosed with Parkinson’s disease, Leo replied, “Don’t give up and don’t get overwhelmed. You have to be in a good mood, even in bad times, no matter how bad it gets. If you lose your humor, the rest will soon follow. You cannot resign yourself to living in fear.

Now, on the bad days when Leo finds his body wanting to retire, his mind won’t let him.

“We all have to die one day. I’m not ready yet. When there is still some fighting in me, I will continue to swing, until the final bell.

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