Our Mustard Super Nick is loaded up and ready to start his Oceans of Hope Challenge!
We had the pleasure of chatting with Nick last week who has been busy preparing to join the Oceans of Hope Challenge 2016 in Turkey. Nick, 40, was diagnosed with MS in 2010 at the age of 34 after a sudden attack on his lower limbs. He has used a manual wheelchair since then to get about. He told us why he’s decided to join a group of people with MS from around the world to sail a flotilla of 6 yachts on the West Coast of Turkey, and why he intends never to allow his MS to dictate what he does ….
“Everyone likes a challenge, right? I like to find at least one challenge a year, particularly since my MS diagnosis. After considering (and then quickly dismissing!) various challenges – climbing (too painful!) and half-marathon (lack of accessibility for wheelchairs!), I stumbled across Sailing Sclerosis and their Oceans of Hope Challenge.”
The Sailing Sclerosis Foundation was established by Dr Mikkel Anthonisen, a Doctor & Psychotherapist at Copenhagen University Hospital, Denmark. Mikkel, also a keen sailor with Relapsing Remitting MS, has been working with multiple sclerosis patients since 2010 and it was a conversation with a patient that sparked the idea – “We set up a really successful sailing programme in Denmark for people with MS. It started quite small, grew bigger as more people got involved and realised their MS didn’t mean they had to stop completely doing something they loved; it’s just a question of doing it a bit differently.” Mikkel has found that sailing has appeared to halt his relapses.
N ick explained, “Initially it looked like all their places were filled, but I decided to contact them anyway. They replied straight away, and after interviews over the Internet, I was accepted. In total there will be 36 people with MS sailing, representing 10 countries around the world.
“The online assessments are necessary to satisfy the skippers that you can be as independent as you can. We will be spending 7 days in a confined space with a small group of people, all of whom have MS and therefore their own personal challenges. They need to know that you can be a team player, and are committed. The trip is self-funded and I estimate I’ve had to raise around £1500 to pay for boat costs, flights, insurance & specialist sailing clothing.
“I’m particularly proud and excited about undertaking this challenge as I am a manual wheelchair user, and this is the first trip being made accessible to wheelchair users. That in itself will be a huge challenge – at home I use my wheelchair all day, unless I’m sitting on the sofa – and whilst I’m allowed to take my wheelchair on board for when we leave the boat, I won’t be able to wheel myself around a yacht – I anticipate I will spend most of my time on the boat on my knees or my bum! The boat however has been adapted for people with limited ability with plenty of grab rails and accessible toilets.
“Each yacht (there will be a flotilla of 6) will be crewed by a skipper and 6 people from around the world, all of whom have some form of MS. The skipper of our boat also has MS so we will be a totally MS crewed yacht! It is a truly international affair, with people coming from the Netherlands, Denmark, US, Mexico, Australia, Germany, Switzerland, The UK and two other countries that I can’t think of right now!
“We fly from Stansted this Friday to join the team in Turkey for a team briefing on Saturday afternoon. We will have a practice run on Sunday morning before heading back to Gocek Marin for a welcome party hosted by the local Mayor from the Royal Gocek Sailing Club. We then head out of Gocek on Monday morning for 6 days of sailing. There is a very carefully thought out shift pattern of three people sailing at any one time to factor in rest time and afternoon siesta’s for those that need it and minimise fatigue. We will aim to complete between 4-5 hours of sailing per day, with the rest of the time on board for rest, relaxation, swimming and mooring up to explore the Turkish culture. The comforting thing is that this trip is run by a person with MS for people with MS. The organisers have made it very clear that if you feel symptoms of fatigue, you can stop and rest. There is no pressure to have to sail if you are struggling, although obviously everyone is there because they’ve wanted to stretch and challenge themselves through a sailing experience.
“What do I hope to gain from this? This is not only about the sailing. It is about what you can challenge yourself to do, mentally and physically. What can you and your MS cope with? Above all it’s a learning experience and, I hope, a holiday. Yes, I’m nervous – it will be my first time away without my wife, my carer. But I’m also very excited. I plan to take each day as it comes, get stuck into the sailing as much as my MS will allow, and if on the odd morning I need to have an additional 2 hours in bed, I won’t beat myself up about it! I feel reassured that although on the face of it this is a “challenge”, it is highly organised to support all of us through it in any way we need so we avoid feeling overstretched or fatigued, and above all ensuring we come home with a huge sense of pride and achievement.
“Ironically, the biggest hurdle so far has been arranging the transport from Norwich to Stansted Airport! Amazingly there are no accessible buses from Norwich to Stansted and after some bad experiences being stuck on trains at Ely with no-one to help me off, the only realistic option was to rely on a lift from a friend. I like to be as independent as possible but I guess that will have to wait until I arrive at the airport!”
We wish Nick the very best of luck on his adventure and can’t wait to see him at our next social on 21st May to hear all about it! You can follow Nick’s sailing experience via his travel blog http://www.travelpod.com/members/oohturkey2016. Find out more about the Oceans of Hope Challenge at http://www.sailing-sclerosis.org/oceans-of-hope.