Forword: Windsurfing UK.
By Rob’s own admission in this article he was a 40 something happy, healthy active individual, who loved windsurfing and cycling. We know Rob well at Windsurfing UK. To say we were shocked when we found out about his Parkinson’s diagnosis is an understatement. Ever the positive chap, however, we’ve seen Rob doggedly refuse to let it stop his watery antics and living life to the full. We feel Rob’s story is one worth sharing to help raise awareness about PD and to also show there are ways to keep on doing the things you love, even when initially you may think the poo’s hit the fan.
Words & pics: Rob Britton.
How long have you windsurfed and when did you start?
I’ve windsurfed shy of thirty years now. At the age of sixteen I took to the water on a Bic Hard Rock and a 5m Gaastra sail. My local spot was a land locked spot, in Gloucestershire, called Croft Farm. The wind was gusty and the runs short – Hooking in and getting in foot straps were a thing of dreams for the location, and for me generally. In the early years my relationship with windsurfing was one of love and frustration. I loved the idea of the sport, but my slow progression was frustrating!
Six years on and I joined Sunsail, and my windsurfing life got flipped upside down. Gone was the Bic Hard Rock and now there were racks upon racks of new, up to date, boards, and sails to play with. The hours, between beach work and socializing with guests, were heavily invested in windsurfing. The illusive foot straps and harness goal was quickly realised.
2002 and my seasons overseas finished, and we had set up a home on UK’s south coast, Gosport. Work drifted away from the watersports industry, a family was started, and the age-old balance of family, work and hobbies commenced. Sessions became sporadic and a small family car, not supporting a stack of windsurfing gear, steered me down the kiting route. Kiting lasted a year, and I then found myself at the front of a Shearwater Sailing Catamaran.
May 2020, windsurf board and quiver reinstated, and old / new windsurfing haunts are being revisited! The adventure continues!
Where do you mainly sail, and why?
My local spot is Stokes Bay – It always was, during my middle years of windsurfing, but I was drawn away on many occasions to Hill Head and Hayling Island.
2020, Stokes Bay has been an excellent venue and a great foundation for my reintroduction into windsurfing. The venue can be sailed in a multiple of wind directions with the state of the tide not hampering your session, too much. It has no shore dump to speak of. You can foil, freeride and bump ‘n’ Jump on the Solent chop. It’s not Hawaii but it is a spot that can be used throughout the year. Launching from Bayside, the west end of the bay, is my favored launch. From front door to being beach side, and rigged, 20 – 30 mins. Stokes is not just about the conditions it’s the people and the community. Stokes Bay has brilliant characters, all at various points on their windsurfing journey. Always on hand to lend a hand to assist and recognize when to offer up well delivered banter.
Already I’ve had two Stokes Bay brethren swim out to me when I had kit failure. One for my kit and one for me… I know this happens at loads of places. It galvanizes a community and clearly shows the support you can expect at Stokes Bay.
How often do you manage a session, working things around work and family commitments?
When it’s windy I hit the beach as often as my family balance allows – quite a bit to be fair. If I have a couple of hours, I stay local. If longer I travel further afield – West Beach on Hayling for instance.
In preparation I trawl countless internet weather stations – when I’m confident that the conditions will be perfect, I start dropping windsurfing into conversations. Alignment of family calendars then occurs cross referencing tide and wind predictions. Plans are then shared, with friends, through various WhatsApp groups. The session then arrives and if your lucky delivers….
Talk us through your diagnosis. When did you realise something wasn’t right and what were the steps that followed?
Summer of 2019 I was walking with my wife. A nice day out and all was good in the world. “What is wrong with your left leg?” Angela, clearly frustrated, asked. “You’re dragging it”. As far as I was concerned nothing wrong. End of that conversation.
A couple of weeks later we are on Saunton Beach (Devon), ready to go surfing, with family and some of our extended Sunsail Family. Everyone was rushing to get in the water and there was me struggling to put my wetsuit on – a moment that has been lovingly filmed for prosperity.
At the end of the session, I realized I was the last one in the water. I started the long walk back to the dunes, board under the arm. “What is wrong with you? You look like an old man walking up the beach,” was the greeting I was met with on my return. Considering I’m the youngest in my group by a few years, this was a kick in the *****. I couldn’t deny it something was not quite right with my left side.
After the holiday I booked a Doc appointment. Expecting to be told I had fallen arches, from wearing flip flops, and a frozen shoulder. I was stunned that the appointment lasted 5 mins. The Doctor had taken one look at me and returned the verdict that I needed an urgent visit to a Neurology department.
My Neurology appointment turned into more than one visit. For three weeks I was questioned, scanned a multitude of ways, tested, prodded, and given some test medication. All very over the top for a frozen shoulder and fallen arches.
21st November 2019 I had my results appointment. The appointment started with more tests – which I was beginning to see really showed the lack of performance from my left side. My consultant then proceeded with “My diagnosis of your condition based on all the tests results is Parkinson’s – you have a condition called Young Onset Parkinson’s Disease”. What? How? Why? Me? Que complete shock, utter disbelief, and denial!
My consultant explained that the challenge is that identifying characteristics are not always present for each sufferer. Which in turn doesn’t help a newly diagnosed sufferer understand what is going on. It was the Q&A, during the month of testing, alongside the scans, that confirmed the diagnosis. “Have family or friends noticed a change in the way you carry out daily tasks?”.
In follow up appointments I learnt that Parkinson’s Disease is a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination. There are other symptoms which may or may not appear, but you get the picture. Parkinson’s symptoms usually begin gradually and worsen over time.
My diagnosis was in 2019 but from speaking with my consultant I would have been in decline before then. This feedback has helped me put an answer to several situations where I couldn’t explain a struggle to carry out simple daily tasks.
How has this impacted your life in general?
People mainly identify Parkinson’s Disease as affecting older people with involuntary shaking of body parts (tremor), slow movement, and stiff and inflexible muscles. Not all sufferers follow these traits.
I’m 44 years old, and Parkinson’s targets my left side with slow movements, rigidity, and stiffness. My right fingers have a slight tremor when meds are wearing off. My right leg and toes are prone to Dystonia – my leg literally twists inward to the point where my toes curl in on themselves. This can last from fifteen to thirty minutes. During this duration, I’m practicing techniques to combat this. All in the hope that everything returns to some form of normality. All of which is exhausting. These symptoms have made me very aware of my surroundings and the situations I find myself in.
Parkinson’s traits can so easily be misinterpreted. To onlookers, these can be perceived as intoxication – ‘one too many’. I’ve had numerous occasions when I have had mates under each arm, carrying me out of a venue, with onlookers looking on with preconceived opinions. You have to see the funny side but then there are times when a sense of humor failure is bubbling under the surface.
I have learnt that certain stress and anxiety levels can act as trigger points for symptoms to manifest. Packing and paying for shopping during a busy period at a shop will make anyone anxious, and stress levels rise, but the added symptom of Parkinson’s Disease is not required. Slowness and rigidity are not helpful. Scan and Go options are a big thumbs up!
And what about windsurfing?
Gear choice has helped massively with time on the water. Windsurfing is hard on the body so anything in the inventory that can offer confidence and support is a must! Before taking the dive back in to the sport I sought out advice on what equipment was best for my condition.
On the rig front I have opted for sails with more reinforcement and only needing one skinny mast – Ezzy Sails and an Ezzy skinny mast have delivered on this front. For my main board, (we don’t mention the other two boards) (hahaha! – ed), two trusted sources both pointed me in the direction of boards with a volume of 120 litres. A far cry from previous times. But I have not been disappointed by that advice. My RRD Firemove (120 liters) delivers on sessions between 15 to 25 knots and with its wide style giving so much confidence when blasting along.
For this venture back in to windsurfing I’ve also invested in suitable wetsuits and coats. Purely down to my condition I struggle with chest zips. Back zip options work for me. In my search for warmth and comfort when rigging up then packing up I have various makes of neoprene rigging jackets and wetsuit beanies.
Managing symptoms on and off the water are a big consideration. Over thinking starts the onset of symptoms and the challenges. For example, footstraps. I choose to hook in first and then get in footstraps. In windy conditions stress levels rise and my left foot freezes. The Elvis Shuffle, Kick ‘n’ Hope and swearing technics have all resulted in a rooster tail of spray and at worse the catapult. My work around is the replacement of rear foot straps with half hook footstraps. The hooks are open to the front of the board allowing my foot to slide, shuffle, its way to a secure position. The first sessions were a bit daunting, but the change has paid off. Leaving the beach at speed, or water starting on a windy session, I’ve found that I can lock in efficiently and carry-on blasting with confidence!
What are you doing to keep on top of the illness?
Medication and exercise. Some think it best to take medication when symptoms are unmanageable and later in life, to pro long the usefulness of the meds. Others are along the lines of quality of life now! I sit in the quality of life now group! I take a cocktail of drugs throughout the day at timed intervals. Two pills (four times a day) to fight symptoms, two pills, (one in the morning and one at night) to pro long the effects of the first pills and a pill to help depression. Certain mornings I also enjoy a sachet of Fybogel to help combat another unwanted side effect of Parkinson’s and the taking of medication.
During windsurfing and periods of exercise / exertion I have another pill which I nickname the Redbull. The Redbull, a dispersible version of my main medication which tops up the levels as and when I feel a wearing off from the main medication. It’s a complete balancing act of timing, current scenario, and situation management. The medication is not a cure, symptoms are ever present, but help manage day to day activities. There are days that the meds don’t work or wear off quicker than planned. A complete balancing act.
Exercise, exercise, exercise, and exercise. Not only does this keep your fitness levels up, so you’re able to cope with everyday life, but helps positivity. This is easier said than done when you’re trying to motivate yourself to move, and your symptoms aren’t playing ball. My Parkinson Nurse won’t hear of any excuses! If I start to moan her first retort is “how much exercise are you doing?” my usual answer doesn’t even begin to meet requirements! I’m by no means a Mr Motivator but I agree with the theory.
What support are you getting regarding Parkinson’s?
The support has been overwhelming on all fronts – family, friends, NHS, and work.
Daily my wife and family kick my butt and support me on activities to keep me on the right track and being me. I get the impression that it’s for a personal gain of silence and reduced hassles, for all, with me out and about.
The NHS has me seeing a consultant on a regular basis throughout the year. I have a Nurse who specializes in Parkinson’s, on stand by, via email / phone. I’m about to have a Physio therapist, specializing in Neuro conditions, assigned to me – I’m expecting my butt to be kicked into action with this recruitment.
On the work front, through health plans, I’ve had two rounds of counselling, each lasting roughly eight sessions. The counselling has really assisted me on the journey with tools and techniques to manage scenarios. On reflection common sense stuff but when your nose up to the issue, at hand, difficult to realize.
What’s been the hardest thing about whole situation?
I’ve gone from a healthy 40-year-old that would knock out 100 miles on a road bike for kicks, dance until there was no one left on the dance floor, competitively crew on a catamaran amongst many other activities to a completely opposite person. Slow, stiff, and shuffling.
Any advice you’d give to others in a similar situation?
Don’t stop moving, don’t stop talking, work on a positive attitude, listen to the advice given and keep in the moment however exhausting. Take any opportunity of help. I’m bad at this but the times when I have overexerted on the water and your kit is taken off you, when you reach the shore, and carried up the beach the relief is amazing and so appreciated!
Plans for the rest of 2022?
Keep on keeping on – windsurfing, mountain biking and seeking out other ways to drive the awareness of Parkinson’s.
And what about windsurfing goals? Still got a few to tick off. If so, what?
To jump on the foil bandwagon. I’ve been told of so many positives around the discipline. I just need to stop making excuses and foil!
The “goal” is to keep on windsurfing. It’s not just about being on the water but about visiting new spots and meeting other water enthusiasts. I’m up for networking with other windsurfers who are diagnosed with Parkinson’s, or other disabilities. The goal is to share hints and tips that may just give us those extra sessions, to enjoy, out on the water!
Final thoughts on living with Parkinson’s?
There currently is no cure for Parkinson’s Disease which means the decline, albeit slow, carries on with symptoms worsening over time. Meds give you a quality of life but without awareness of this disease, there would be no much needed and appreciated support in its various forms, making the journey almost impossible.
My condition will deteriorate but taking the medication, using the support available and being around what I enjoy is my aim to keep on going. “I’ve got Parkinson’s, it hasn’t got me”!
Shouts and thanks?
Firstly, and most importantly my wife, Angela, and my family (near and far). Thank you for your support and patience!
Secondly a huge thank you to the Sunsail Family (too many names to mention but you know who you are! – both far and near) for the support, kicks, and words of encouragement. Also, to the group that wouldn’t let Parky stop me mountain biking through a purchase of a one handed braking system, the Shearwater Catamaran Family, Biking Boyos, Buellers Bikers, BBQ Dads, all that I have sailed with at Stokes Bay these last years, Andy Biggs in the procurement department, work colleagues, NHS, and Windsurfing UK for this spot to help raise awareness regarding Parkinson’s Disease. A huge thank you to all – everything you do is very much appreciated!