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Braving the open waters to change the perceptions of MS

Braving the open waters to change the perceptions of MS

Being diagnosed with Multiple Sclerosis was life changing for both Neil Barnett from Akaroa and Russell Watts, Taupo. However, on July 5 for four weeks both gentlemen will board and become part of the crew sailing the 67-foot vessel, Oceans of Hope, sailing from Darwin to Singapore, in an effort to change the perceptions of MS around the world.

Oceans of Hope, a project by Sailing Sclerosis, left Denmark in late 2014 for a 17 month journey circumnavigating the world to change the perception of multiple sclerosis by showing what is possible when people with a chronic disease are empowered to conquer their individual challenges, by engaging those whose lives are touched by MS and developing networks as a foundation for life changing behaviours.

Multiple Sclerosis (MS) is a chronic condition which affects the central nervous system, where scarring (sclerosis) on the myelin surrounding the nerves is damaged causing a range of symptoms including; mobility, speech and vision problems, cognitive changes and chronic pain. MS is an unpredictable and scary condition and the course a person’s disease will take is unknown. Ocean’s of Hope aims to broaden the horizons of those who perceive themselves as trapped by their condition, either physically or mentally, and inspire them to realise that they still have potential to achieve great things.

Joining a crew of 8 others, including 5 that are diagnosed with MS, the 4 week will not be easy. “I hope that by being involved with this "journey" people will understand more about what we live with particularly the fatigue,” explained Barnett. “It is so hard to describe to people how fatigued I feel every day. People say ‘we all get tired’ - But MS fatigue is something else altogether. Like, nothing I can ever remember feeling before MS. My wife understands because she knows me so well but even she cannot fully understand because she can not feel it!”

For Barnett who was diagnosed with MS 8 years ago at the age of 50, the experience will be particularly special, having sailed on the same vessel in its previous life in the 1988 BT Challenge. “Imagine my amazement to find she was Motorola - the exact same yacht I had sailed on 18 years earlier from Edinburgh to Plymouth via London Tower Bridge.” After believing he had left behind his previous life in the yachting circuit as an importer and marketer he jumped at the chance to be a part of this challenge “I just had to do it and become 'reconnected' with large yachts and crews,” Barnett explains. “With my sailing experience I also felt that I would be a very useful crew member and be able to help others on board with less experience.”

Watts, who was diagnosed in 2010, a year after a motorbike accident which left him with a Traumatic Brain Injury couldn’t believe it when he was accepted onto the crew in May when the boat was visiting Auckland. Watts has never let either condition hold him back, quite the opposite. Participating in over 100 cycle races Watts is a New Zealand para-tri athlete, competing both at home and abroad. In February he took part in a 7 day event, the BDO Wellington to Auckland Cycle Challenge as part of Team Kiss Goodbye to MS. “We are in awe of Russell and what he has achieved, a true inspiration,” remarked Multiple Sclerosis Society of New Zealand President Malcolm Rickerby. “We wish Neil and Russell all the best with their voyage and commend them on taking the challenge with Oceans of Hope to change the perceptions of Multiple Sclerosis.”

ENDS

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