Overcoming the fear

Reporter Seamus Enright caught up with Leo Forde to hear about living life to the full despite his Parkinson's diagnosis in this week's Inside Story...

Leo Forde remembers the preciseness with which he received his diagnosis. The atmosphere in the room deflated immediately as the sentence vanished, and the doctor, trained in delivering such news, never broke eye contact. It occurred to Leo he should probably listen to what the doctor was now saying.

“Have you someone with you?” the doc asked, sitting opposite at a typical soft-grey ergonomically designed office desk.

“My wife...,” replied Leo.

“Maybe you should get her,” ushered the doctor.

When Fionnuala arrived, there were no hushed tones, and no over elaboration. She gripped her husband’s hand tight, her wedding ring pressing firm to the touch. “She got more of a shock than I did,” says Leo, for whom there were no immediate signs or portents that his world was falling apart.

Instead, confirmation of early-onset Parkinson’s, initially at least, came as strange relief. If anything, it put to bed two years of worrying why some of the basic tasks of daily everyday life had slowly become more difficult.

A self-confessed “car-buff”, it was around 2015 when Leo first noticed “something was up”.

The Killeshandra-native, who has made Meath his home in recent decades, had been out polishing one of several “pride and joys” - a 1983 red Porche 911- when his fingers started locking.

“I’d have to use my other hand to try force them closed,” Leo remembers back.

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

Owner of a successful water services business that counts Diageo, Glanbia, Coca Cola, and Meath Council among a lengthy list of established clientele, and with a young family, Leo was in a “good” place.

Although Leo’s own sporting days ended on the bobbled concrete surfaces of the handball alleys at St Patrick’s College in Cavan, the middle-aged dad led an “active life” - between chasing his kids to matches, working outdoors and with his hands, or pursing a his life-long passion for hot-air ballooning.

It’s why the hand locking, and other small “niggles” such as an inexplicable lethargy, played so heavy on his mind.

Then there was the “tremoring”. Leo’s leg would shake whenever he got stressed - not enough to rate on the Richter scale, but adequate to begin having a seismic impact on his otherwise unshakeable self-confidence.

“I thought it was maybe just age, a touch of arthritis or a trapped nerve,” Leo says of his first observations. Like so many men, he delaying going to the GP, ignoring symptoms until he could no longer.

When an appointment was eventually booked, Leo’s GP pointed to the possibility that it was “only my nerves”.

For almost two years more Leo would be left pondering the cause of this ‘mystery illness’ that dedicated itself to stymieing his usual vigour. It was only after a chance meeting with a former colleague, who years previously had been diagnosed with Parkinson’s, that Leo asked for a referral.

“I don’t have a ‘Parkinsonian Gait’, is how she kept putting 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 less than 10 minutes for the Mater Hospital consultant assessing Leo to draw his conclusion and send him forward for further tests.

Much of the account was fashioned on the slow walk down to consultant’s office. From reception, down a flight of stairs, and along a short sterilised corridor, by the time they came upon a door with a brass typed-faced name, littered with letters after, Leo knew the news “wasn’t going to be good”.

“I’d been thinking I’d a brain tumour, and God knows what else,” says Leo who attempted to prepare himself by searching for possible outcomes online. Under Parkinson’s, the return was row upon row of shaky old people. “You know yourself, if you type your worries into old Doctor Google, you’ll end up either dead or pregnant.”

Says Leo, establishing a point of pathos, both accepting and resigned: “So that’s the scéal,” he tells The Anglo-Celt.

Scéal eile is what came after.

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

In the aftermath, reality set in, and hard. Leo was haunted by a replaying series of images. Wheelchair bound. Blankets on knees. Upset loved ones. Even death.

To a still relatively young Leo, he had suddenly been diagnosed with an “old person’s disease”- one that caused him to slow down, lose balance and bang into doors, be forgetful.

Symptoms

There are dozens of symptoms attached to Parkinson’s, ranging from behavioural changes to sleep problems, depression and memory difficulties, as well as fatigue and muscle rigidity.

The physical complications often begin on one side of the body, and can remain worse there, even when affecting both sides.

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

Another Parkinsonian quirk is urinary urgency. “I’d be driving along and suddenly I’d have to veer to the side of the road. Lots of bad dreams as well, nightmares that’d leave me in cold sweat.

“The kids were frightened when all this came up first. They didn’t know what the outcome would be, not for me, not what as a family we were facing into. You hate to see that happen but its out of your control.”

It was the depression though associated with Parkinson’s that Leo dreaded most.

At his worst he started visiting Niamh Fitzpatrick, psychologist and sister of Rescue 116 Captain Dara Fitzpatrick who tragically lost her life when the Irish Coast Guard helicopter went down off the Mayo coast in March 2017. Dara and Niamh’s father is a native of Cootehill and the family still have connections there.

“She helped me an awful lot,” reflects Leo, who later began seeing another specialist, Sarah Cassidy in Athboy. “Without putting a tooth in it, they saved my life.”

More than anything, Parkinson’s had shaken the confidence of a man no stranger to holding the rapt attention of high-level execs on a daily basis.

“My self-confidence went completely,” says Leo pausing to let his dog outside. A cross between a Labrador and a Springer Spaniel, Leo shares that there are days “little beauty” ‘Mollie’ still can’t grasp why her owner isn’t as mobile as once before.

“I didn’t want to be standing in front of people shaking and tremoring. It affected everything - my work-life, home-life, my mood.”

But Dr Cassidy, founder of the Smithsfield Clinic, got Leo back thinking on “the straight and narrow”.

“She got me back thinking about my four kids, how much they mean to me, my wife, who has always been there every step of the way. She got me back to where, yes I have this illness, but no I won’t let it define me or the person that I am.”

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

Lockdown retreat

2020, a year of turmoil for many, became a period of learning, of introspection, and contentment for Leo.

Leo’s consultant had text him a salutary warning: ‘Stay out of circulation.’

So that’s what Leo did, building an oakframe barn out back with his son, and spending lunchtimes in good weather resting in the company of family, sizzling sausages on the barbecue and watching the condensation on his beer fall like the seconds on 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 time spent doing things like that.”

Treatment

There were still however challenges to come. Six months later Leo was shaking so badly his doctor immediately recommended him as a candidate for Deep Brain Stimulation (DBS).

A self-confessed “divil” on social media, Leo had shared a video of his tremoring on Twitter. Within 24 hours the clip had racked-up several thousand views.

“You can only joke it away so much. I’d get embarrassed meeting people too, trying to put my hand in my pocket or jiggle keys to distract from my hand shaking. 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 destined for London where a surgeon would place thin metal wires to deliver electrical impulses to the portion of his brain responsible for movement.

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

Thankfully it has worked for Leo.

Less than 24 hours after discharge, Leo was sitting having a pint with his surgeon at The Scarsdale Tavern in poshest Kensington. “It was absolutely surreal,” recalls Leo, who feels the procedure has given him a “new lease on life”.

Leo, an identical twin to brother Aaron, observes: “I won’t say I’m as fit as a 56-year-old should be, but I’m a hell of a lot better than I might [had it not been for DBS]. No tremors. Smoother walking.”

Leo regard his motivation as his strongest weapon against Parkinson’s. He even hopes to get his pilot’s licence back to go flying hot-air balloons again.

Asked what advice he would now give to someone recently diagnosed with Parkinson’s, Leo says: “Don’t give up, and don’t let it get on top of you. You have to have good humour, even in bad times, no matter how bad it gets. If you lose your humour, the rest soon follows. You can’t resign yourself to live in the fear.”

Now, on bad days when Leo finds while his body wanting to retreat, his mind won’t let it.

“We all have to die sometime. I’m not just ready yet. When there’s fight still in me, I’ll keep swinging, right up to the final bell.”