Sailing after stroke
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In 2012 Sam suffered a masive stroke which affected his mobility and language. His wife Camilla describes how they have managed to carry on sailing their yacht, and offers some thoughts to others who may be struggling with illness or disability but really want to keep on sailing.
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Sailing after stroke
- 1. Carry on cruising Sailing after a stroke
- 2. Carry on Cruising, 1962 “Now then. I am going to be very blunt and make some cutting remarks.”
- 3. “Now then. I am going to be very blunt and make some cutting remarks.” • Our experience – Before Sam’s stroke – After Sam’s stroke – What we can do • Keep on cruising – Do you need to give up? • Stay healthy – Stroke is more likely than you think
- 5. Sailing as a family • When Sam & I moved in together in 1986, the first thing we bought was a cafetiere… • ...and the second thing we bought was a Miracle dinghy
- 6. • Several flotilla holidays & charters • A Peanut • A Topper • A Winkle Brig • A Sadler 29, Magewind • And in 2005 our current boat, a Westerly Storm – Kalessin of Orwell Over the years we’ve added…
- 7. And we have sailed… River Medway The Broads Belgium Netherlands France Spain Portugal Balearics Baltic Germany Denmark Holidays in Greece & Turkey French canals East Coast
- 8. In May 2012… • Kalessin was in a shed in Augustenborg, Denmark • Camilla was working in London • Sam was due to go out for the start of the season but was diagnosed with atrial fibrillation… • ...and three days later he suffered a massive stroke
- 9. Here he is a few days after the stroke
- 10. When Sam came home
- 11. Getting back to sailing • October 2012 – we managed one sail at the very end of the season, with thanks to the Nancy Oldfield trust
- 12. But what about Kalessin? • Sell her and take up Broads boating • Keep her but leave Sam at home • Carry on cruising… even when it’s hard work – We decided to give it a try
- 13. Looking for help
- 14. Thank you Rob
- 15. This is the method we evolved • Sam wears a lifejacket and a climbing harness. The main halyard is attached to the harness
- 16. How we do it • Step 1. Sam uses his wheelchair to get down the jetty (dependent on tides). The halyard is attached to the climbing harness and he walks down the finger pontoon
- 17. How we do it • Step 2. We drop the guardrails and Sam sits on the side-deck. I swing his legs aft so that he is half-lying down and start winching
- 18. How we do it • Step 3. Once he is lifted enough to clear the gunwale I swing him inboard. The cockpit tent was designed to zip back so we can do this
- 19. How we do it • Step 4. I manoeuvre him over the cockpit seat, and lower him gently on to a cushion. • Time for a G&T
- 20. Getting over the bow is trickier • We use the main halyard to get Sam as far as the mast, then change to the spinnaker halyard
- 21. Getting over the bow is trickier • There is a loop in the spinnaker halyard with a rope attached to it. We need at least one additional crew member to haul this rope which is attached either to a cleat… • …or to a passer-by
- 22. What Sam can do on board • Get around in the cockpit • Get around below (unless it’s very rough) • Get in and out of the heads • Wash up • Sleep in the forepeak – with a bit of help • Relax & enjoy sailing • Tell us when we’re doing something wrong
- 23. What Sam can’t do on board • Helm for extended periods • Navigation • Engine or other repairs • Foredeck work • Jump off to attach mooring lines • Get on or off a dinghy… as far as we know • Feel independent
- 24. And that means…. • Frustration • 44% of stroke survivors break up with their partner or consider doing so
- 25. What this means for me • I’m ok with navigation, sailing, helming, mooring & domestics • YM Offshore to boost confidence • I have learned more about the engine and other systems (especially the loo) – RYA marine diesel, plumbing & electrics courses • Frustrating lack of physical strength • Making life easier & outsourcing work
- 26. Where can we get to? Denmark & Germany, 2013 Up the Thames, 2014 Belgium & Dutch Delta, 2015 Southern Brittany, 2016
- 28. KEEP ON CRUISING
- 29. Keeping on cruising • Any degree of disability may be enough for people to give up sailing – often with regret • CA membership drops off sharply after the age of 75 • Sometimes one partner is ready to give up and the other one is not • Many people sail into their 80s and beyond Joan Heywood was 98 when this picture was taken
- 30. Keeping on cruising: some options • Take on extra crew • Cruises in company • Adapt your boat & home berth • Moderate your sailing ambitions • Ask for help • Charter more accessible boats • Change to a boat that’s easier to manage • Sail with a charity
- 31. • Take on extra crew – Ask family and friends – Use the CA crewing service – Use fitter friends or a yacht delivery service to get the boat to a cruising ground – Make sure you will get on, and agree the ground rules Keeping on cruising: some options
- 32. Keeping on cruising: some options • Cruises in company – Someone else does a lot of the planning and booking – There are always others around to help
- 33. Keeping on cruising: some options • Moderate your sailing ambitions – Is now the right time to tackle the Northwest Passage? • Stay closer to home – Coastal rather than open sea – Inland rather than coastal • Stay in Europe • Ask for help – Phone ahead to book a berth
- 34. • Consider an area with modest tides, or none • Plan ahead! • Ask for help – Phone ahead to book a berth Keeping on cruising: some options
- 35. Keeping on cruising: a better boat? • Charter before buying if you can • Act now, not when you can no longer manage your existing boat • Sadly, almost no boats are designed to be accessible • Motor may be better than sail
- 36. Keeping on cruising: a better boat?
- 37. STAY HEALTHY
- 38. Stroke: the facts • In the UK, on average, someone suffers a stroke every three and a half minutes. Worldwide, it’s every two seconds • There are 1.2 million stroke survivors in the UK • Stroke is one of the largest causes of complex disability in the world – half of all stroke survivors have a disability • More than a third of stroke survivors in the UK are dependent on others • By the age of 75, 1 in 5 women and 1 in 6 men will have had a stroke • 80% of strokes are preventable
- 39. Risk Factors Obesity Family history or ethnicity Previous stroke & TIA Age Binge drinking & substance misuse Inactivity Heart disease & AF High blood pressure Hormonal contraception & HRT Smoking High cholesterol Diabetes
- 40. Act FAST Other symptoms include: •Sudden weakness or numbness on one side of the body •Sudden confusion •Sudden dizziness or unsteadiness •Sudden visual problem •Severe headache
Editor's Notes
- This is Sam in hospital a few days after his stroke, on his 72nd birthday. Our two boys, Guy and Ben, are on the left and Sam’s sons from his first marriage, Tim & Nick, on the right. At this point Sam could barely talk at all. He couldn’t stand or walk. He was completely dependent on 24-hour care.
- Caring for someone who has had a massive stroke is a huge burden and I felt very lost in those early days. Our house had to be made safe and accessible and we needed special equipment. I literally had no idea what care he would need. At the same time I had to take on the administration of everything which Sam had done before the stroke. I stopped work completely to look after him and of course I had no idea what would happen financially or what support was available to us. Sam made terrific progress, first at home, and then at Icanho, the rehab centre for people with acquired brain injury in Stowmarket. But I felt my needs were left out in the cold.
- Stroke occurs approximately 152,000 times in the UK each year. However, between 1990 – 2010 the incidence of stroke has fallen by 19%. However, stroke is still the fourth single largest cause of death in the UK and the second in the world. We still have over one third of all stroke survivors in the UK being dependent upon others for help with everyday activities. Of those 1 in 5 are cared for by family and/or friends. There are approximately 1.2 million stroke survivors in the UK. Stroke is one of the largest cause of disability – half of all stroke survivors have a disability. 1 in 4 strokes (26%) occur in people under 65 years of age. Yet many people don’t know what a stroke is – WE WANT TO CHANGE THAT! That’s what we are here for today… Useful Resources – State of the Nation Stroke Statistics (January 2016) or summary sheet Training - Volunteer induction
- Delegates should be aware that up to 80% of all strokes could be prevented. Each point increases risk of having as stroke. Primary prevention is undertaken before the event occurs Secondary prevention is applicable to those who have already had a stroke, it aims to prevent recurrence In terms of risk factors there are: Risk factors we can’t change (purple circles – age, family history/ethnicity). Risks that we can’t change but that can be ‘managed’ and reduced (blue circles). Risk factors that can be changed with lifestyle factors (yellow circles). Age: This is not something that we can really do anything about but with age the risk of stroke increases. But stroke can happen at any age. Age is the single most important risk factor for stroke. The risk of having a stroke doubles every decade after the age of 55. By the age of 75, 1 in 5 women and 1 in 6 men will have a stroke. Note: Women have a higher life expectancy which explains the higher incidence. Family History or Ethnicity: There is no proven genetic link with regard to stroke running in a family but we do sometimes see several members of the same family having a stroke. This could also be due to shared lifestyle factors that increase the risk of stroke or as a result of other risk factors/diseases which are inherited. Black people are twice as likely to have a stroke at a younger age than white people. This is mainly due to a higher prevalence of high blood pressure, diabetes and sickle cell disease. South Asian people have strokes at a significantly younger age than white people. South Asian people are more likely to have high blood pressure, high cholesterol and diabetes than white people. Useful resources – Stroke in African Caribbean people, Stroke in South Asian people, FAST Advert BME Previous stroke or TIA: About 30% of stroke survivors will experience a recurrent stroke or TIA. Generally if there is a confirmed diagnosis of either than that individual will be under the care of the appropriate health care professionals and being encouraged to make lifestyle changes and lower risk factors. Useful resources – Transient Ischaemic Attack Hypertension/High Blood Pressure: High blood pressure is a contributing factor in 54% of strokes in England, Wales and Northern Ireland. Blood pressure is a measure of how strongly your blood presses against the walls of your arteries. High blood pressure is when the pressure is consistently too high which can put a strain on your arteries including the ones leading to the brain. It is very important that we get our blood pressure checked regularly and more often if you have already had a stroke or TIA. Useful resources – High Blood Pressure and stroke Heart Disease: Problems like heart valve disease and heart attacks can increase your risk of a stroke. Having treatment for your condition and regular check-ups will help to keep your risk as low as possible. Atrial Fibrillation (AF) is when the heartbeat is irregularly irregular ie: your heart beats to no discernable pattern or rhythm. It can lead to pools of blood being left in the heart chamber which over time can form clots. These clots can travel through your blood stream to the brain and cause a stroke. AF affects about 1 million people in the UK. AF increases your risk of stroke by five times and in about 20% of strokes AF is a contributing factor. Useful resources - Atrial Fibrillation (AF) and stoke Diabetes: Diabetes (type 1 and 2) almost doubles your risk of stroke and is a contributing factor in 20% of strokes in England, Wales and Northern Ireland. Persistently elevated levels of glucose leads to plaque (bad cholesterol, cellular waste and protein) building up in the arteries. This plaque sticks to the blood vessels walls and impairs blood flow which can lead to strokes. Good control of the condition reduces the risk Useful resources – Diabetes and stroke High cholesterol There is ‘good’ and ‘bad’ cholesterol. Too much ‘bad’ cholesterol causes the fatty substance to build up on the artery walls. Cholesterol can be lowered with a healthy balanced diet, exercise and the use of statin medication. Binge drinking and substance misuse: Men and women should not consume more than 14 units of alcohol a week which is equivalent to six pints of beer or seven glasses of wine. If you do drink 14 units of alcohol a week it should be spread over at least three days. You should also have at least two alcohol free days. Regular consumption of large amounts of alcohol greatly increases your risk of ischaemic stroke. Binge-drinking increases your blood pressure and can have lasting effects for several days. Cocaine and amphetamine use poses a particularly high risk of stroke due to the dramatic and sudden spike in blood pressure it causes. Cocaine increases your risk of stroke by 700% in the 24 hours following use. Useful resources – Alcohol and stroke Smoking: Smoking doubles your risk of stroke. The toxins you inhale when smoking can pass from your lungs to your bloodstream and can damage and change cells all around your body, including your artery walls. This can lead to arteries becoming narrow and ‘furred’ up which can restrict blood flow. Useful resources – Smoking and the risk of stroke Obesity: Being overweight increases your risk of ischaemic stroke by 22%. Eating five portions of fruit and vegetables and cutting down of foods that are high in fat, salt and sugar can reduce your risk of stroke. Eating lots of salt can raise your blood pressure. Useful resources – Healthy eating and stroke Hormonal contraception & HRT: Taking the contraceptive pill can lead to a small increase in the risk of stroke because of the increase in blood clots forming. Taking Hormone Replacement Therapy (HRT) can also lead to a small increase of stroke due to blood clots forming and an increase in blood pressure. Useful resources – Women and stroke
- The FAST test (Face Arms Speech Time) helps people to quickly recognise the key symptoms of a TIA or stroke. This highly successful campaign has helped to raise awareness and saved lives. This simple FAST test will help you to recognize the main signs of a stroke: F facial weakness – can the person smile? Has their mouth or eye drooped? A arm weakness – ask them to raise both arms – it is important that it is both arms as the stroke will, probably, only have affected one side and they will inevitably raise the remaining good arm if asked to raise one. S speech problems – can the person speak clearly and understand what you say? T if they fail any of the above it is time to call 999. Stroke is a medical emergency - If the person fails any one of these tests, they should seek urgent medical attention. The sooner specialist treatment can be given the greater the chance of a full recovery. Please keep a note of the time of the attack and let the emergency services know – some medications for stroke can only be given within a set amount of time after the stroke. Other symptoms of a TIA or stroke may include: weakness, numbness, clumsiness pins and needles on one side of the body, for example, in an arm, leg or the face loss of or blurred vision in one or both eyes sudden memory loss or confusion slurred speech or difficulty finding some words Useful resources – FAST Advert, FAST Leaflet Training - Volunteer induction
- Make a note of any questions asked – you do not have to be an expert, refer queries to the relevant Fact sheet on the intranet or to a Stroke Association staff member. Complete the evaluation on Pre-event checklist – number of people attended etc.