‘I am focusing on what I can do’

Robin Simons tells Jessica Quinn about managing Parkinson’s, dancing on mountains and the positivity of dogs

“I think self pity is a terrible affliction”, author and photographer Robin Simons tells me on the crackling phone-line from his home in Germany.
Robin has lived with Parkinson’s disease for more than 20 years, and I last spoke with him when he was living in Connemara, climbing mountains and planning on writing a book of poetry and photographs inspired by the health benefits of nature.
Ten years on, Robin has finished writing his third book, Dancing on the Mountain Tops, detailing his climbs of 150 mountains in Ireland, including many in Clare, and the lessons he has learned along the way.
However, these weren’t the only challenges Robin has faced. In 2016 he had major Deep Brain Stimulation surgery to help treat his Parkinson’s and just five weeks later he had a near fatal collision with a tree.
Those setbacks, however, didn’t stop him and his wife making it to Ennis later that year for Fleadh Cheoil na hÉireann.
Originally from Manchester Robin moved away from the UK after being medically retired due to his Parkinson’s. He lived in the West Indies for a time before settling in Ireland.
“I consider Ireland my spiritual home to be honest, I just felt at home here. I knew when I was in London and I got ill with my Parkinson’s that I was not in the right place for me. I needed to go somewhere that would nurture me.
“I just felt I had nothing to lose and whatever it takes I will do, not just to survive but to make the most of my life, because I don’t want to waste a single moment. I sold my property and decided to make the most of it, I didn’t want to be a victim to the illness, to lie down and lose control.”
While living in Maam he became friends with Ennis’ Sr Carmel Kehoe who encouraged him to start writing, telling us she was “instrumental” in this latest book. Later Sr Kehoe would introduce him to his wife Annette, who he has now followed to her native Germany.
Dancing on the Mountain Tops is the story of Robin’s life with Parkinson’s, and of course his mountain-climbing exploits.
“I was diagnosed with Parkinson’s when I was 40 and I’m 64 now. It’s a funny illness because it’s so different for every person. I’ve had periods of being seriously ill with it, but managed to come back to better health. I go up and down every day.
“I say to my wife, there are two people she is married to, the one where I am having symptoms and have to focus on not falling over, then the other when the medication kicks in and I can be expansive and take on ideas.”
Explaining the idea behind Dancing on the Mountain Tops he says, “When I was in Ireland I was able to climb 150 mountains, some of them were easy, and some were bloody difficult I have to say. Some I almost fell off!
“But when I got to the top I used to do a little dance. I was so happy to reach the summit I almost felt like I’d beaten my Parkinson’s. For a few short moments on top of the mountain, my Parkinson’s wasn’t there.
“Being on the mountains is the place I felt closest to God. I made the most of it while I could, I can’t do it now because the Parkinson’s has progressed.
“This book is about the spirit of adventure, of what you can achieve. It’s about an attitude on life. How you see yourself will determine the limits you put on yourself.”
Robin is now living in the German city of Deidesheim with his wife and their beloved dog Murphy, though he still retains strong connections to Ireland.
He tells us he “wouldn’t have missed” the All Ireland Fleadh when it came to Ennis in 2016.
The visit came in the same year that he underwent Deep Brain Stimulation surgery, in which metal wires are placed on the brain. The surgery lasted for ten hours, five of those while he was awake.
“It’s very weird, I had two holes drilled in my head when fully conscious and that didn’t hurt. The most amazing thing was, when they placed the electrodes they turn up the volume to help place them, I can actually say I’ve heard myself thinking because they are trying to get the right noise, which is the brain firing neurons.”
Just five weeks later Robin had a near fatal collision when he lost his footing and fell down a hill. He fractured his skull and ripped part of his nose off.
“I wasn’t aware of that at the time, all I was aware of was I had to stay conscious. They air lifted me by ambulance and the surgeon said to me at the time I don’t know what’s going to happen, you could have a brain injury or an infection from having over half the forest in my head with the electrodes. I just said to him, it’s up to you now, I’m in the hands of God.”
He was determined to recover in time for the Fleadh which he describes as a “fantastic” experience.
He recalls how some people asked if he was a dancer because he could not stop moving due to his Parkinson’s, which he took in good humour.
However he adds, “I remember being at a concert in Dublin and this woman passed me and said, ‘they shouldn’t allow these people out’.
“If you have a neurological disorder you get used to that, people assume things like you’re drunk or whatever. I don’t have a problem with that, I’ll always say ‘I have Parkinson’s would you like me to explain’.”
He may not be able to climb mountains any more, but that isn’t stopping Robin who is already planning a fourth book, inspired by his love of dogs.
“I’ve a colleague in America and they are very advanced in service dogs for Parkinson’s. It’s amazing what they can do and the book will be a celebration of the relationship between dogs and people. My dogs have been fantastic, they keep me active 365 days a year.”
He continues, “The way I look at it is, I don’t see myself as an ill person. I have a chronic condition that I have to manage and it gets more and more complex. But I don’t see myself as a sick person, I make the most of the opportunities that come along.
“There’s a quote I like from John O’Donohue’s poem ‘Fluent’ from Connemara Blues that goes ‘I would love to live like a river flows carried by the surprise of its own unfolding.’
“You have to accept that this is a dynamic process, it’s not once and for all. With Parkinson’s you’re losing things all the time slowly, and you have to accept that and let it go.
“I’m focusing on what I can do. I can walk my dogs, I can drive my car, I can clean my house, I can write a book and I have a good quality of life here.
“Dogs have such positive energy and they keep me active as much as possible. I can’t climb mountains any more, but I can walk my dog.
“I miss going up the mountains, very much so, but you have to accept what comes with a chronic illness. I don’t fight it, I flow with it. It’s been like a roller-coaster ride, there have been good times and bad times, illness and good health and I just roll with it. I look back on the last 20 years and I’m surprised and delighted with what I have achieved.”

Dancing on the Mountain Tops, which includes a multi-media presentation, is available online via the Apple bookstore and also via Robin’s website robinsblogandbull.com

by Jessica Quinn