Bristol people with experience of stroke tell their stories for World Stroke Day on 29 October

Every year, 1,300 people in the Bristol area have a stroke, and half of those people will have a lasting disability as a result. World Stroke Day is on 29 October 2018, so the Bristol Health Partners Stroke Health Integration Team (HIT) is marking the day with the stories of the local people in the team who have experienced stroke, and the people who help them through recovery.

Dan’s story

Dan is a professional boxer. At the age of 28, a week before the biggest bout of his career and in peak physical condition, he was in the boxing gym when his speech became slurred.

He tried to repeat what he was saying to his colleagues, only to become speechless. Then he felt the right side of his face droop and his right hand melt in on itself. He thought to himself: “these are stroke symptoms, but I’m not having a stroke”. He could not articulate what was happening so he sat on a box and looked at the floor. This all happened within 20 seconds.

His manager took him to hospital, where he waited two days for an MRI scan. It was diagnosed as a cryptogenic ischaemic stroke caused by a hole in his heart.

Dan says:

“The year after the stroke was a culture shock for me. I had gone from full time training to feeling dizzy walking around the block.

“I trained myself back to a decent fitness level and started an open degree to fill my spare time. I found myself in the middle of the patent foramen ovale (PFO) closure funding debate and constantly pestering the hospital for an update on my treatment. Thankfully, the hole in my heart was an atrial septal defect (ASD) and not a PFO. This meant my necessary procedure was funded by the NHS – PFO closure isn’t – and after 10 and half months I received my ASD closure surgery.

“I am now on the road to full recovery. My friends and family were a vital part of that. I couldn’t have done it without them.

“This whole experience made me contemplate what it’s like to be truly vulnerable. I dread to think what the same experience would be like for people who are not lucky enough to have the same support network I did. Before my stroke I was unaware of stroke in young people. I want to help anyone who has a similar feeling of vulnerability to me, to let them know they are not alone. If other people have been in that situation and came through it, so can they.”

Jenny’s story

Jenny is Dan’s wife, and is central to helping him through his recovery. They had been married for six months and had just started renovating their house when Dan had his stroke. Jenny works with people who are deaf and, luckily, had persuaded Dan to learn sign language when they first got together. This skill was to prove essential during Dan’s recovery, while he was regaining speech.

Jenny says:

“The morning of Dan’s stroke he left for work like any other day. I had no time to prepare for what the next 10 and a half months were to bring.

“We ended up celebrating Dan’s 29th birthday in hospital. It was so hard to see the man I love, once in peak fighting condition, so fragile and weak. I remember pushing him round the hospital in a wheelchair, feeling so helpless.

“Once Dan was diagnosed and sent home with blood thinning tablets, it felt like we were forgotten about. We were left for months without answers. I felt like Dan’s health was in my hands and I had such a responsibility to do everything in my power to aid his recovery.

“I am so grateful for my family and close friends who have been so understanding and listened to me cry, panic, vent. Without them I would not have been as strong. There’s little support out there for us partners. I think so many people forget that we too are survivors of stroke and have been equally affected, but in a different way.”

Stephen’s story

Stephen’s parents and in-laws were alive into their late 80s and 90s, but living at opposite ends of the UK, in West Wales and Scotland. On top of the usual pressures of a normal life, including Stephen’s job as a Dean in a university and looking after the grandchildren for two days a week, Stephen and his wife Fiona were driving long distances to see one or other set of parents most weekends.

In July 2015, Stephen’s father died. His mother was staying with them and the funeral was set for 19 July. On the 18th he got up early to complete the order of service and to take his mother to view a sheltered flat before they drove to Wales. But the occupant of the flat refused them entry. This caused huge emotional distress for Stephen, and suddenly he felt the floor underneath him go sticky and wobbly, and he fell against the wall and slid down it.

A caretaker, who saw all this happen, immediately called an ambulance. Stephen regained consciousness in Southmead Hospital and someone was saying, “Stephen, you’ve had a haemorrhagic stroke”.

Stephen says:

“There can be few things as overwhelmingly and suddenly catastrophic as a major stroke. There is no build-up to it and no way to prepare for it. I have no recollection of being in A&E, or of having brain scans, or nasogastric tubes and catheters fitted, just a sense of being in great pain, utterly helpless and frighteningly vulnerable, though my family maintained a constant vigil, and I felt safer when the excellent acute care nursing staff were looking after me.

“After transfer to the rehab ward, I slowly realised the immensity of what had happened. At the time I was much more distressed about my loss of identity and about potential cognitive damage than I was about physical impairment. Reassurance on all those counts was gained by various means. Specialised practitioners and my family were in the front line caring for me in my unstable physical state, but work colleagues who visited, asked for my advice and then took it seriously made a big difference to my morale. So did the neuropsychologist who put me through heavy-duty cognitive assessments so that I had concrete evidence that my marbles were reasonably intact.”

Claire’s story

Life was really busy for Claire.She was working part time as a community nursery nurse in the centre of Bristol and as a senior steward at the local church. She had two children still living at home and her youngest was preparing to start university.

One Saturday morning everything started normally. Claire went to a church coffee morning and tried to ask for a cup of coffee… but the words just wouldn’t come out. Then, in front of a hall full of people, she collapsed.

An ambulance was called and Claire was rushed into hospital and given a CT scan.The results showed that her left carotid artery had burst and formed a clot in the centre of the brain, so they injected a solution to dissolve the clot (thrombolysis).

Claire says:

“All the way through I was totally aware of everything going on around me but was unable to move or speak a word. I gradually regained movement in my left side but was left with significant right side weakness.

“I was devastated not to be able to return to work, but now I volunteer for Bristol After Stroke which supports stroke affected people and their families. I like to think that I’ve been able to use my experience to help others going through similar circumstances and to support them to make a life worth living.”

The Stroke Health Integration Team (HIT)

The Stroke HIT brings together clinicians, commissioners, academics, care and support providers and other experts, as well as people who have had strokes and their families and carers. They are committed to preventing strokes and improving the lives of people affected by stroke through working together beyond the limits of individual organisations, in Bristol, North Somerset and South Gloucestershire. They are always looking for new members, especially people with experience of stroke.

Dr Phil Clatworthy, Consultant Stroke Neurologist, North Bristol NHS Trust, is one of the Directors of the HIT. He said:

“More than 20 organisations are involved in stroke care in the Bristol, North Somerset and South Gloucestershire area. Local stroke prevention, treatment and care services need to be improved and to be more accountable to local patients, carers and the public. The Stroke HIT aims to bring everyone with an interest in stroke together, to improve services.

“Just one example, Southmead Hospital is a leading provider of thrombectomy – removal of blood clots following stroke – but at the moment we can’t deliver this relatively new treatment 24/7. This is an operation that can make the difference between making a full recovery from a stroke or experiencing life-changing disabilities. We want to be able to offer it to everyone who needs it after experiencing a stroke.”

The Stroke HIT’s official launch is on 15 November at Circomedia. It will be a celebration of the people who have been affected by stroke, with a photo exhibition of work by patients and carers, and the premier of local film Getting Home, which follows local stroke survivors on their journey to recovery. There will be virtual reality demos, a market place showcasing local stroke support and a Stroke Ambassadors’ café.

There will also be presentations from Stroke HIT members, as well as from Richard Lyle from Bristol, North Somerset and South Gloucestershire Clinical Commissioning Group (BNSSG CCG) on plans to transform stroke services.

Drop in to the launch any time between 2-7pm, with presentations at 2.30pm and again at 5.30pm.