As a neurologist and expert in stroke rehabilitation, Professor Udo Kischka could only imagine the emotional and physical anguish his patients experienced.
What happens when a neurologist has a stroke? One couple share their story
Until, aged 62, he had a severe stroke himself – the eminent doctor lost the use of his left side and his cognitive function was also affected.
"I was muddled, my concentration and memory were really bad, I was tearful, I slept much more than usual, and I had very little energy," Kischka explains. "I was not simply weakened in my left side – it was as if my left side was no longer part of me."
Because of his wide-ranging experience treating strokes as a doctor, and the fact his wife, Dr Helen Kennerley, was a consultant clinical psychologist who specialised in cognitive behavioural therapy (CBT) – which can be used to help people recovering from strokes – it'd be easy to assume Kischka might have coped better than an 'ordinary' patient.
But while the couple agree their in-depth understanding of what was happening may have helped reduce their fear and confusion, they stress that like most, if not all, people who experience a stroke – including well-known names such as Game Of Thrones actress Emilia Clarke and broadcaster Andrew Marr – they struggled.
Within hours of it happening, back in 2016, Kischka uttered to his wife: "This is a life-changing event, Helen."
"He was right," she says. "At once our lives were radically altered and we were about to embark on a journey for which we were ill-prepared."
Two years on, Kischka had recovered sufficiently to start working on a book with Kennerley about their experience. Now, Surviving Stroke: The Story Of A Neurologist And His Family, has just been published.
Here, the couple tell us more about the experience and what they've learned from it…
Do you think your jobs helped you handle experiencing a stroke better?
"I think we were advantaged, not least because we were well-connected within the local neuro-rehabilitation world," says Kennerley. "We were also at an advantage because we were usually very aware of what was happening at a neurological or a psychological level, and this might well have reduced the fear and confusion we faced. We were fortunate because our professional backgrounds helped us understand what each other might be going through. Udo had noticed that partners often struggled to appreciate the psychological impact of acquired brain injury, but we did have a reasonably good understanding.
"Having said this, we struggled. And I certainly gave myself a hard time for not managing everything better than I did. I think that's a trap many health professionals fall into if they're faced with a health crisis."
How is your health now?
"My journey towards independence has continued very slowly, and I'm far from where I hoped to be by now," says Kischka. "This is typical in recovery after a major stroke – by year three, progress is subtle and we all have to be on the lookout for signs of improvement, however small. For example, my wife was recently delighted, after three years, to see me eating M& with my left hand and called our daughter in to witness this.
"I've had to accept certain limitations are permanent and that life will continue to be a roller-coaster ride, with even the slightest infection setting me back. For me, it's still hard to accept my lack of mobility, reduced independence and my profound lack of energy. The most important part of my life now is my family and I feel very fortunate to have a strong sense of being part of a supportive and loving unit."
What advice would you give to others who've just had a stroke?
"Prepare for a long, slow recovery," says Kischka. "Skin takes days to heal, broken bones take weeks, but the brain takes months to recover. This might seem like bad news, but the good news is that our brains can keep recovering months and years after a stroke, so you can continue to make progress over a long time, even if the rate of recovery slows down. So it's worth keeping up the rehabilitation exercises and holding on to hope."
Kennerley adds: "Gather up your friends – you might need a lot of support. Then find out as much as you can about your loved one's state – try to talk to a professional at each hospital visit, someone who will update you on progress and plans. Without this, it's easy to feel lost. Sometimes discharge from hospital comes swiftly and you need to have ongoing support set up: as soon as you have the energy, find out about organisations and services that can help. Remember that stroke is a family experience – so make sure the kids' needs are attended to."
Is there anything you wish you'd done differently?
"I think I've used my time as best I could, given my limited mobility and my fatigue," says Kischka. "Although it's important to strive to continue with rehab, and I do have regular sessions, it's also important to be realistic about the 'new you' and what's attainable."
Kennerley says: "In the early days, I would have looked after myself better. I got so run down that I was bed-bound and no use to anyone. I wasn't able to visit Udo, and our home life suffered. I still feel bad about not being able to give the kids more attention. They were 14 and 16 when their father had a brain haemorrhage and disappeared from our home for nine months. It stretched me to visit Udo daily, hold down a job, pick up the administrative fallout from his stroke, and give to the kids. If I had my time over, I'd review the balance and give the teens more attention.
"Once Udo was home, I wish I'd been more realistic about his rehabilitation goals. I think I expected too much of him. This created tension when Udo didn't meet the goals and when he did, he was so exhausted he promptly fell asleep."
How much have your lives changed since the stroke?
"Life has changed dramatically: domestically, socially, occupationally, and financially," says Kennerley. "It took a while to appreciate just how much the game had changed but accommodating this, rather than striving for the impossible or bemoaning what we no longer had, has been crucial to our survival. The formerly very busy Udo has retired much earlier than he anticipated, and now he reviews academic papers from home and attends the odd research meeting, where he can give advice as a neurologist and as a stroke patient.
"I'd semi-retired and just begun to hone my skills as a lady who lunches when Udo had his stroke. As we still had a family to support, I came out of retirement. We've grown into our new regime and although it wasn't what we wanted, Udo finds he's much more connected with his family now, and I have quite exciting new challenges in my work. We also occasionally tour as a double act [giving talks]."
Surviving Stroke: The Story Of A Neurologist And His Family by Helen Kennerley & Udo Kischka is published by Robinson, priced GBP 13.99. Available now.