Looking for positives in the face of adversity, can a diagnosis of a degenerative disease ever be turned into a positive - not only for the individual but also for the masses?
Three years ago, I was diagnosed with young onset Parkinson’s disease just before my 44th birthday. An unusual start to a blog trying to promote positivity but believe it or not I was pleased with this diagnosis - it was preferable to the options going through my mind at that time. I had wondered if I had motor neurone disease or multiple sclerosis, but strangely I hadn’t considered Parkinson’s disease.
Ask most people about Parkinson’s and they usually associate it with the older male population and shaking or tremors, indeed if you Google it, the first image is likely to be the hand-drawn sketch of a stooped gentlemen with shaky lines around him. I am of the age where my first memory of the mention of Parkinson’s takes me back to the future and to Michael J. Fox - people were shocked and horrified by the announcement that this young actor had got this disease but fast forward to now and Michael has worked incredibly hard on raising awareness and building up the Fox Foundation. I believe he is the world’s figurehead for and future of this disease. Though as much as I would like to report that once get diagnosed you join this unique club you are handed the keys to your own new electric DeLorean to get around in, unfortunately that would not be true.
You can probably see I like to add a small amount of humour to everything. Is it a coping method or means to stay positive? I’m really not sure. What I do know is it works for me and for now I plan to continue with it. Laughter, exercise and a positive outlook are the three things I try to focus on. If nothing else, it stops me thinking about sex, gambling, shopping and drugs which are the often not talked about compulsive behaviour disorders listed as possible side effects for most drugs prescribed for treating the disease.
Anyway that’s my attempt at a brief introduction to this blog, who am I? My name’s Robin Buttery, I’m 47 and I’m a technical instructor at De Montfort University in Leicester, and I’m married with a 13-year-old son. Around two years ago I spotted a post online that was looking for people with young onset Parkinson’s to undertake a challenge. It was a bit spurious and elusive as it didn’t tell you what the challenge was, only that it was the chance of a lifetime, needing a passport and the ability to get a visa for Australia, but not much more.
It actually took me a while to decide whether to apply or not, I did, and then I waited and waited. Nothing. I had given up on hearing anything so moved on with life, until I found an email in my junk box (always worth a look). Someone had tried to make contact, wow... excitement and fear in equal measures. It still didn’t tell me what the challenge was but it was an invitation to have an informal telephone interview. After the interview I received an email telling me more - most importantly what the challenge was: to row across the Indian Ocean.
To say I wasn’t expecting that was an understatement. After picking my jaw off the floor I wondered what do I do now? Run and hide, or accept something that was so far out of my comfort zone that I had smashed through the safety barriers and was now freefalling into the abyss. After much thought and talking with my close family I came to the conclusion of why not? This could be something really positive for the Parkinson’s community, would be a great focus for me to concentrate on and it included a research project with Oxford Brookes University - where do I sign?
So began my adventure to accept the challenge and become the World’s first person with Parkinson’s disease to successfully row the Indian Ocean - in fact the first person with Parkinson’s disease to row any ocean.
We arrived in Australia on 1 June, hoping to set off on the challenge a couple of weeks later. That unfortunately wasn’t to be; plagued by holdups all out of our control including customs, tech failures, international postal systems and the weather we didn’t leave Australia until 6 July. Even that was against the advice by our weather router, however we needed to go. Australia and its people were fantastic but we were leaving late in the year for this crossing and the longer we left it the more likely we would become another crew who didn’t achieve it - a statistic we didn’t want to be part of.
We made good progress at first but then, as predicted, the weather worsened and we had to deploy the sea anchor (a parachute of around 4.5m diameter sunk in the water, that tries to maintain your position and slows your drifting while the crew take cover and batten down the hatches). If you looked at the tracker you could see when we were on the sea anchor - it was when we were going backwards, around in circles and probably the point where many of our followers wondered if we had any idea what we were doing.
After what felt like a lifetime but was closer to a week the weather improved, we stowed away the sea anchor hoping not to see it again and steadily our progress across the Indian Ocean picked up.
There is nothing like rowing on the sea, it’s not easy. I was the novice rower of the team and had been training for around 18 months. My fitness levels were pretty good, but my ocean rowing technique required improvement. I thought with a few thousand miles left this should be easily achievable, by the end of it I should be a pro. As we liked to say on this row: what could possibly go wrong?
Beside the rowing, my specialist skill was to be the ‘fixer’ of everything - the crew had quite literally put their faith and lives in my shaky hands to get them out of trouble. Was this wise? Of course it was, they don’t call me Practical Parky for nothing.
So you may wonder what sort of things go wrong on a small rowing boat, I knew I certainly did. Well from simple mechanics of changing bearings in the skateboard wheels that keep the rowers seat moving freely, basic electrical fault finding to servicing the water maker that provided our drinking water lifeline. I was kept surprisingly busy from early on and eventually found myself questioning what didn’t go wrong.
Rowing at night was fun, calmer yet faster while you listen to your favourite music on your iPod. This is probably the only ‘me time’ you got, though I had some slightly out of body experiences and would often find myself questioning my sanity at the dancing shadows on the bulkhead in front of me. A possible advantage of night time rowing is you can’t see what’s coming and your hearing is vastly reduced, so you are always sure of some surprises usually in the form of getting soaked by a wave.
Talking of waves, I never realised there were so many types of wave, shape, size, frequency, colour and noise all made life more interesting perhaps even hypnotising, whether looking at the light laser blue of a wave before it crashes over into the bubbling pot of white froth or the foreboding sound of a ripping wave usually coming to hit you beam on soaking everything in its path. Waves as tall as houses that felt like they would never end, a real uphill struggle or the waves that appear towards the end of a shift, with the sole purpose of reminding us who was in control as they soak us moments before changeover. There is some nice slow motion footage showing the power of mother nature’s waves over our boat, No Great Shakes.
For probably the best part of 68 days at sea our main visual stimulation was the 360 degrees of Ocean usually an aqua blue colour with white cresting waves. If we lucky we would see some wildlife, birds, flying fish and squid, Dorado, passing whales the occasional boat or the lights of a plane. Stunning sunrises and epic sun sets, the real night sky and aqua phosphorescence. Imagine our joy when we first thought we caught a glimpse of Mauritius, a ghostly and barely visible shadow on the horizon. Or was it clouds? For some time we weren’t entirely sure. As time progressed and we rowed ever closer the islands form became more defined, the evening before we landed we were treated to a spectacular sun set over Mauritius, the island appeared almost on fire.
We could hardly believe our adventure was drawing to a close, left wondering what delights or more accurately what food we might expect when we got to our accommodation, the thought of proper facilities to wash and a real bed to sleep in made our progress steady - in fact we probably sped up a bit. The island slowly grew larger, at night it’s appearance looking akin to a James Bond villain’s lair from early in the morning we would see its form change to a spiky, unworldly lush green. To us this vision was quite simply mind-blowing.
We arrived at Grande Bai early on Friday 14 September greeted by a crowd and treated to the best breakfast ever of pastries, coffee and fruit. We felt like kings, albeit unkempt and in desperate need of a shower. One of the team, James, spent less than five hours on the island before jetting off back to the UK, just in time to perform best man duties.
Already I’m being asked what next, will you row another ocean? Hey, how about a rest first, folks?
In truth we are still raising awareness of the challenge, people can still donate via our website.
I am still being monitored by Oxford Brookes University as part of a research project and I was invited over to the European Parliament to sit on a round table to discuss young onset Parkinson’s disease. What with returning to work and family life, my next adventure may just be living.
For more information on Robin and the team’s row, visit rowtheindianocean.com
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