Life on the water with Multiple Sclerosis

25 Oct 19
The year before he was diagnosed with Multiple Sclerosis in 2010, Nick Jarvis, bought a wheelchair on eBay. The pain in his legs was so bad he couldn’t walk properly. The wheelchair gave him a bit more freedom, some of his life back.

Seven years later he independently walked off a yacht in Turkey with one crutch. It was, he insists, impossible. And yet it happened.

So how does sailing promote independence and confidence in people with MS?

“For me MS dimmed the lights,” explains Robert Munns, founder of Oceans of Hope UK, a charity that offers people from all over the world the opportunity to sail alongside others with MS. “MS affects your life on a daily basis; it takes your identity away, you feel isolated and fear the unknown and loss of possibilities.

“For seven years after my diagnosis I’d not been committing to life. Everything felt pointless; I didn’t know how I was going to feel tomorrow let alone in six months. By making them realise what’s possible, sailing gives people with MS the opportunity to achieve their own form of greatness. The lights go back on.”

Taking back control

The MS Society describes MS as “a condition that affects your brain and spinal cord. The coating that protects your nerves (myelin) is damaged. This causes a range of symptoms like blurred vision and problems with how we move think and feel.” Because of the range of symptoms, MS is different for everyone.

Robert grew up on the water on the Norfolk Broads and was working as a marina manager in Brighton, having forged a career in cruising, when he was diagnosed at 40. But it was only after a chance meeting with the charity, Sailing Sclerosis, led to him sailing across the Pacific he was reminded of sailing’s restorative powers.

On his return to England, he committed his life to, “giving people with MS a taste of what I had.” Nick Jarvis is one of those people.

Diagnosed at 35 whilst working as a basketball development officer in 2010, Nick had never sailed when, through his involvement in the MS Society’s Norwich and District Branch, he heard about the chance to go to Turkey with Oceans of Hope. That was in late 2015. The following May he had his life changing on-the-water experience. He’s never looked back.

Nick Jarvis Oceans of Hope“I spent the first three days on my knees getting around,” he recalls.
“But because of the movement of the boat, the fact I was using my core muscles and it was warm I started feeling stronger. My legs just love the heat! On day four I pulled myself up, holding on to the back of the boat and just went with the waves.

“But the ‘that’s impossible’ moment came when one of the crew said
she saw me walk from the top of the galley ladder to the helm. I hadn’t even realised I’d done it. By Saturday I walked off that boat with one crutch, and when I walked into my physio’s office a couple of days later she was in complete shock.

“I learned there’s nothing you can’t do on a boat, it’s a level playing field for everyone. I went from sleeping every day being the norm to
re-finding the confidence I’d lost when I was diagnosed to get out and meet other people again.”

Such was the impact that Nick wanted to learn more when he returned home, so he got involved with the Nancy Oldfield Trust, the Norwich-based Sailability site. The Trust reconfigured an RS 2000 for him and he sailed regularly throughout 2016 and 2017 before family life started to limit his sailing time.

Nick still uses a wheelchair on bad days and especially in the cold winter months. He returned from his fourth Oceans of Hope trip in October, and has never stopped championing the benefits of sailing to people with MS.

Earlier this year, Nick and his partner, who also has the condition, organised for a group of 25 from an MS support group they run to go sailing for a day at the Nancy Oldfield Trust. Three days later he received a message from one of the participants, who lives in Leeds, to say she had gone home and joined her local club!

This isn’t uncommon Robert admits: “We’ve probably got over 400 examples of people who have come back from trips and got involved with local and national Sailability groups, including people who are now instructors and teach others to sail locally.

“Sailing enables people to learn new skills, challenge themselves in an environment they’re not used to and take it further if they want to. It helps improve the health of your brain and is about getting rid of the fuse that dims the lights.”

Mums knows

Trish Smith on the helm of a yachtAfter her diagnosis in 2016, Trish Smith absolutely needed the lights turning back on.

With her MS affecting her brain more than body, a combination of extreme fatigue and some very stressful personal events, including the loss of her father, saw Trish endure a prolonged period of depression. But seeing an introduction sailing weekend at Bewl Water advertised on her local Hampshire MS Support Facebook group last summer led to a change in her whole attitude to her condition in one weekend.

“I’ve never been a confident person but something made me do it,” Trish describes. “That weekend taught me I’m not limited in what I can do and I can still experience things like sailing, whatever direction my MS goes in.”

Trish joined Oceans of Hope in Croatia weeks later and proved to be a natural on the helm. Her confidence blossomed to the extent her eyes light up when she talks about her passion for sailing. On her most recent cruise in Turkey she sent a photo of herself on the helm to her mum. Mum’s response was defining.

“She said she had not seen me look so happy for such a long time. Mums know everything so when she says that I’ll take it.”

Sailing switched Trish’s light on. She won’t be the last person with MS whose life changes course on the water.