The gentle pitch and roll of a sailing boat provides a distinct form of sensory input that we don’t experience when we sit still—called proprioception. Now an Australian program Sailability is exploring how activating proprioception can help stroke patients regain language skills, as well as their sense of hope and wonder.
Ask any person what they understand by the effects of a stroke and the reply generally is one involving minimal hope, and a perception of negative life changes for the victim’s family.
But it’s what happens when a person is discharged that ultimately determines their progress and rehabilitation. This is where programs like the nation-wide Sailability initiative come in.
Sailability involves people with a disability participating in sailing in a two person dinghy known as a 3.03, and when they have developed sufficient skill and confidence they can learn to sail solo in a dinghy known as a Liberty. The dinghies are specially constructed so that it is virtually impossible for them to capsize.
The heavy centre board is generally lowered in place on a hoist or quayside crane and when in place provides excellent dinghy stability in winds up to 30 knots. However, no participant would ever leave the jetty when winds reach as high as 20 knots. Safety is paramount, and in our Goolwa club on the Lower Murray three safety boats circle the Sailability fleet at all times.
Generally, people with a stroke sail for 45 minutes to an hour in a Saturday morning session with the option of an additional sail in the afternoon. We have thirty disabled men and women participating, with an age range generally from 18 to 70-plus years. Mostly they are people with age-onset disabilities or young people who have been involved in traumatic accidents. As they progress they have options of sailing in club, state, national and international championships, and as many of them say, ‘that’s a far cry from a being in a bedridden state in a nursing home,’ which is where many of them come from when they first arrive at Sailability.
Consider Geoffrey, a fifty-five year old lawyer who has had a severe stroke following a bleed which affected the left frontal part of his brain and which seriously impaired the motor and cognitive loop in an area known as the basal ganglia. As a result Geoffrey is paralysed on the right side of his body. He also has severe aphasia which means he has very limited speech.
‘Geoffrey always looks forward to Saturday Sailability,’ his wife says. Looking forward to an activity is a distinct and necessary trigger to excite frontal lobe function.
What is the frontal lobe function which is so necessary for Geoffrey? It includes Geoffrey thinking about getting out of bed, planning breakfast and then leaving his home, meeting new people who support but also make demands on him, and when he arrives it includes getting him out of his wheelchair. Support for Geoffrey is crucial. It is comparable in social terms with the safety net used by tight-rope walkers and trapeze artists. Given the safety net trapeze artists can then concentrate on their act. Geoffrey’s errorless support system at Sailabilityguarantees that he will succeed.
On the jetty Geoffrey is fitted with a full body sling so that he can be hoisted and then lowered into the dinghy. Geoffrey weighs 100 kilos so the operation with the hoist involves many checks to see that his sling is correctly fitted, the hoist and safety line is in place and the dinghy appropriately positioned. Geoffrey participates in all this, advising us of his comfort, orientation and readiness for lift off and then descent into the dinghy. All this involves an intense level of personal interaction, language stimulation, even if only by gesture in the first instance, and of course physical adjustment. This level of activity takes place on the jetty with the wind in Geoffrey’s face amid laughter, curses and gestures as momentarily he is suspended, swinging above the water. Secure in his sling Geoffrey’s anxiety is reduced and he smiles. All this and Geoffrey hasn’t yet taken his seat in the dinghy. What is going on in his brain and how then is this therapeutic?
As Geoffrey swings above the water he feels the weight of his body again almost for the first time since his stroke. He looks around and slowly stretches his legs. In his earlier depressed and immobile state he wondered why people at the sailing club had bothered to invite him. But swinging there he’s wondering what is going to happen next; will the boat capsize, will his life jacket prevent him from drowning? It is the apprehension that naturally precedes an adventure—apprehension which serves to stimulate personal awareness. Swinging there, everything is clear in the morning light. Waves splash on the dinghy’s bow and lap at the gunwales as Geoffrey is lowered into his dinghy seat. I’m Geoffrey’s sailing partner and I climb over him to take my place.
‘You’re a big ugly bugger,’ I say, ‘so you’ll balance me. Two overweight, ugly buggers together!’ Geoffrey grins and almost chokes as saliva fills his mouth. ‘You can‘t die on me Geoffrey, not until we’ve finished our sail,’ I say. ‘God no,’ mumbles Geoffrey, but his words are clear enough. ‘I don’t intend to die, not yet anyway,’ he gurgles.
Geoffrey’s dinghy sails close to the shore. He notices children playing in the shallows. He attends of old, stirring associations, images, language and memories. He marvels at how water swirls intimately around the children’s feet, the sand absorbing and releasing their feet. He sees gulls nosing their way down in circles that span the edges of the bay. Lowering and hovering, they land assembling in groups facing incoming waves. Further away on the beach Geoffrey notices a family playing beach cricket, hurling a ball, laughing and calling repeatedly. Their joy mirrors Geoffrey’s increasing delight, along with his motivation to try and talk about what he has seen. The gentle pitch and roll of the dinghy facilitates Geoffrey’s speech. Why is this?
The sense known as proprioception, or the movement of Geoffrey’s body in space, provides a distinct form of sensory input that we don’t experience when we sit still. This is sensory input for Geoffrey is generated by the rolling dinghy. The proprioception punches its way through the brain’s thalmic gateway into the neocortex so that higher order thinking and language production, previously obstructed for Geoffrey, can evolve. Does this sound far-fetched? Sure it is anecdotal, but Geoffrey and other stroke victims don’t need a double blind, random controlled study to tell that in the rolling and pitching dinghy, they’re able to produce movement of hands and language that previously did not exist.
What else do we do when sailing the dinghy? Certainly Geoffrey can hold the tiller in his paralysed right hand with me guiding him, he can respond to instructions to tighten or loosen the port jib sheet with his intact left hand.
Okay, so what else is therapeutic? Geoffrey and I are together for 45 minutes. I know that he likes a good joke, and a limerick or two. Some of the jokes of course are out of earshot and are R rated. But Geoffrey’s laughter is hearty and as research demonstrates this reduces stress and softens the central nervous system. After a good laugh Geoffrey is now more motivated and better able to attend and produce language. It’s a slow process but it works, and he wants more.
When we complete our sail Geoffrey is lifted out of the dinghy and wheelchair bound negotiates his way back to the club rooms. If he’s there well before lunch, then there is coffee and cake and conversation with fellow sailors. This is camaraderie which necessitates interaction, even if to begin with only by gesture. But gesture is part of communication and has its own grammatical structure identical to regular speech. The trigger for and bridge to Geoffrey’s positive thinking, problem solving and speech improvement has begun.
What progress has been made for Geoffrey? Eighteen months on he’s willing to try participating in a race. He sails with me in the state championship. We’re near last in a long weekend’s racing and Geoffrey is exhausted. But his stamina has improved; he’s now more aware, he has more words, his speech is clearer and more productive. Is he still depressed? From time to time of course he is. But he now has his own strategies to overcome this and the principal one is always having something tangible and demanding with which to look forward to.
A year after his first sail and with the aid of a quad stick he is walking slowly to the hoist. Soon he’ll transfer to a walking stick.
Rest is required for the victims of stroke, but overall it is the opposite of what is needed for effective rehabilitation. Carefully structured and well supported programs motivate, and spur the imagination of the stroke victim. Rehabilitation is not easy. There’s a long hard road to improving skills, but it does take place out there on the water, on any windy day. Geoffrey tells me he doesn’t feel disabled when out sailing and he’s no longer just waiting, with life running out on him. He’s regaining skills, demonstrating his talents, communicating with colleagues and is part of his community again.
Roger Rees is Emeritus Professor of Disability Research at Flinders University in Adelaide. This is an edited transcript of Professor Rees speech on Ockham's Razor.
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