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Saturday, March 18, 2017

Skyfall for Parkinson's

March 18, 2017

Former Balbriggan mayor, Frank Snowe talks to John Manning about living with Parkinson's and why he's decided to parachute from an aeroplane


Former Balbriggan Mayor Frank Snowe is preparing to do a parachute jump in Perth


A former Mayor of Balbriggan is preparing to parachute from a plane at the age of 65 to raise money and awareness for Parkinson's disease, a condition he was diagnosed with 16 months ago.
Frank Snowe is a well known former Balbriggan town councillor and wore the town's mayoral chain for a year as the Cathaoirleach of that council but for the last couple of years, Frank has been waging a private battle with Parkinson's disease and now he wants to help other people with the same condition.
Frank has found a lack of information and support in the area for people suffering with Parkinson's with the nearest support groups for the condition meeting as far away as Dundalk and Malahide. The former Balbriggan mayor now wants to set up a new support group serving people affected by Parkinson's in Balbriggan and Drogheda, and any point in between.
To that end, he's decided to raise some cash and publicity for his new mission by jumping out of a plane in Australia along with his granddaughter. 
When we meet, Frank who was always know for his one-liners, joked about the adventure, saying: 'Well, I decided if I'm shaking all the time, I might as well have a good reason to shake.'
Explaining how the skydive idea came about, he said: 'The idea came from my granddaughter. My son-in-law in Australia did a sky jump about three years ago and his daughter, my granddaughter wanted to do it with him but she was only 10 or 11 but you had to be at least 12 to legally do it. 
'So, she was over here on holidays in September and I told her I was going over there (to Australia) and she said to me, well are we going to do the sky jump because I promised her when she was 12 that we could do it. 
'So, I said OK, never really thinking we would do it until I got a phone call a couple of weeks ago and Emma (Frank's granddaughter) said she can't wait for me to go over so we can jump out of a plane - so we're going for it.'
Since being diagnosed in November of 2015 with Parkinson's, Frank has found access to information and support difficult. He said: 'I've been a little disappointed with how Parkinson's is dealt with here. You are told by a doctor you have Parkinson's and maybe you can't see a specialist for 12 or 15 months so what do you do? You look up Google or whatever because there's nothing else there for you. In fairness, to the Parkinson's Association of Ireland, they do their best and I wouldn't knock them at all but they haven't really got the funding they need.'
That is why, the money raised by Frank's sky dive will help establish a local support group with the help of the association.
Frank explained: 'I put two and two together and decided that along with doing the jump in Australia, I would do some fundraising for Parkinson's and see if I could possibly help anybody else in the area in Drogheda or in Balbriggan who have Parkinson's and set up something locally and link in with the association.'
The former Balbriggan Mayor believes there is a lot of ignorance among the general population about what living with Parkinson's involves and he is anxious to explain how the condition affects his daily life. One of the most difficult challenges he has faced in dealing with the condition is its impact on his mental and emotional health.
He explained: 'Every week I go to a certain pub in Balbriggan and meet two pals of mine. To be honest, it's not out of choice - I'm sent out. 
'One of the things about Parkinson's is that you become a bit antisocial. My missus insists I go down and when I get down there, I do enjoy it but the thoughts of going out and meeting people kills me. I don't know why.'
Frank added that before he was diagnosed: 'I had mood swings and terrible depression without any reason to feel depressed - I would sit at the window and just stare into space and people would come to visit and tell me I was in bad form and what's wrong with me and I'd say 'nothing'.'
The difficult with the condition is that it is hard to recognise in its early days until it physically manifests itself with the familiar tremors.
Frank explained: 'You are told you have Parkinson's when you develop tremors and there's no test for it up to that point but there are 10 early signs of it that you wouldn't know to look for unless you already suspected you had Parkinson's. 
'In the early stages, I had gone some peculiar changes in the last couple of years and I couldn't understand what they were. 
'I went from being a very outgoing sort of person who had no problem standing up in front of people and speaking publicly, to someone who wanted to sit at the back of the room and didn't want to be involved in anything.
'There were simple little signs like I had fallen a couple of times. Walking along, my right leg would stop all of a sudden and I would stumble. 
'Personality-wise, I gave up golf after playing the game all my life since I was a kid and loving it - I just walked off the course one day and never went back and felt total apathy about it.'
Some of the physical impacts of the condition were first noticed by Frank's wife of more than 40 years. As the couple walked hand-in-hand, she noticed Frank's arm would sometimes stiffen. These and other clues eventually led to medical investigations and then a diagnosis.
Frank remembers receiving that initial diagnosis: 'She (the doctor) said: 'Frank, what did Doctor Google have to say about this?' And I told her: 'Dr Google said it's probably Parkinson's.' And she said: 'Unfortunately, I think Dr Google is right.'
The former Balbriggan town councillor said: 'It made sense of all the things that had been happening to me over the course of a couple of years and explained why I'd felt depressed and all of that so although it came as a shock, it also came as a relief that I wasn't going nuts and I was able to name it and then figure out what the hell I do about it.'
But it was after diagnosis, that Frank began to encounter problems with the system here and found a lack of information and support and lengthy waits to see a medical specialist.
He said: 'There was an appointment made for me to see a specialist in Beaumont in November of 2015 and I finally got to see the specialist in January of this year.'
Frank wants to make those early days of diagnosis a little easier for people in the Drogheda and Balbriggan area by providing a support network for people with the condition that not only provides the necessary information and support in those early stages but also provides continued support for people as the disease inevitably progresses.
In that mission, Frank has taken some inspiration from his nephew, Keith Duffy and his determined charity work for autism. Frank said: 'He gave me the idea to try to turn something bad into something positive and useful.'
He added: 'In a year's time I would like to see people who are out there and in the same boat as I am and have nobody to talk to about it, they have a place to go. Unless you have Parkinson's it is very difficult to describe what it is like and maybe we can help a few people. 
'I've built up contacts over the years and I'm fairly good at organising things and know how to chair a meeting so maybe I can use some of those skills to help.'
Asked about his own attitude to the disease, he said determinedly: 'Live with it, get on with it and don't let it beat me - that's my attitude to it. But I know that is very hard to do. 
'As time goes on I've got better at dealing with it and this parachute thing and the idea of setting up the group has given me a goal to reach for. It gives me a mission.'
To people who are newly diagnosed with Parkinson's, Frank has some simple but insightful advice. He said: 'If you are newly-diagnosed, I would say first, don't panic. Don't panic and don't keep it to yourself and don't be embarrassed about it.'
The former Mayor said that anyone interested in joining a new support group for people affected by Parkinson's disease from the Balbriggan and Drogheda area, you can contact him by email at franksnowe@gmail.com
If you want to donate to his skydive challenge, go to https://give.everydayhero.com/ie/frank-snowe-charity-sky-dive

http://www.independent.ie/regionals/fingalindependent/news/skyfall-for-parkinsons-35526646.html

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