Elizabeth Berrett
When Professor Udo Kischka spent his days treating people after a stroke, he thought he understood the damage it could do. Then, at 62, the consultant neurologist became the patient, felled by a severe stroke that robbed him of the use of his left side and fogged the very brain he’d spent a career studying.
One moment, he was the expert at the end of the bed; the next, he was the man wondering where his left arm had gone.
“As if my left side was no longer part of me”
In the immediate aftermath, the usually razor-sharp doctor suddenly found himself scrambled.
“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.”
That’s not just a bad day at the office; that’s the office, the building and the map to get there all going missing at once.
Within hours of the event back in 2016, he turned to his wife, Dr Helen Kennerley, a consultant clinical psychologist who specialises in CBT and brain injury, and told her plainly:
“This is a life-changing event, Helen.”
“He was right,” she says now. “At once our lives were radically altered and we were about to embark on a journey for which we were ill-prepared.”
Two experts, one stroke – no shortcuts
On paper, they were the dream team. He was the neurologist and stroke rehabilitation specialist; she understood the psychology of brain injury and recovery. Between them, they’d seen just about every version of this story play out in other people’s lives.
Surely that meant they were better equipped to handle his stroke than an ‘ordinary’ family? Not quite.
“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.”
Even with all their expertise, they quickly discovered what every stroke family learns: knowledge helps, but it doesn’t grant immunity from fear, exhaustion or grief.
Like well-known survivors such as Emilia Clarke and broadcaster Andrew Marr, they found that a neat professional narrative doesn’t prepare you for the messy reality of learning to live with a damaged brain.
Three years on: watching for the tiny wins
So where is he now, on this very long back nine? Two years after the stroke, the pair began working on a book together. Today, that book – Surviving Stroke: The Story Of A Neurologist And His Family – is out in the world. But recovery itself is still very much a work-in-progress.
“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&Ms 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.”
For many people after a stroke, progress stops looking like dramatic montage scenes and starts looking like… well, eating M&Ms with the “wrong” hand. That’s the point, they say: you have to train your eye to spot the tiny shifts.
“Prepare for a long, slow recovery”
If you’ve just had a stroke – or someone you love has – Kischka’s advice is blunt but hopeful.
“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.”
In other words, this isn’t a sprint, it’s not even a marathon – it’s more like an open-ended endurance event where the finish line keeps moving.
Kennerley’s advice is aimed squarely at families, who often feel just as shell-shocked as the person who’s had the stroke.
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.”
Services from organisations like Stroke Association and local neuro-rehab teams can become lifelines – not just for the patient, but for everyone orbiting them.
What they’d do differently
Ask a family what they’d change about the way they handled a stroke, and you rarely get a short answer. The Kischka-Kennerley household is no exception.
From Udo’s perspective, he feels he’s largely done what he can within the limits of his new body.
“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 is more critical of herself – in that very health-professional way.
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.”
It’s a reminder that carers, too, need boundaries, rest and their own version of rehab after a family stroke. Running yourself into the ground doesn’t make you a hero; it just makes you horizontal.
A new life after stroke – whether they wanted it or not
For this family, the stroke didn’t just alter a medical chart. It redrew the whole map: careers, finances, social life, even how the dishwasher gets stacked.
“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].”
It’s not the life they’d planned, but it’s a life – one built around a slower pace, closer family ties and a shared mission to make sense of what stroke does to ordinary households.
The book born from a brain injury
Two years after Udo’s stroke, the pair began turning diary notes, clinic knowledge and kitchen-table conversations into a book. The result is Surviving Stroke: The Story Of A Neurologist And His Family, a blend of medical insight and raw family memoir, published by Robinson.
Surviving Stroke: The Story Of A Neurologist And His Family by Helen Kennerley & Udo Kischka is published by Robinson, priced £13.99. Available now.
For anyone whose life has been sideswiped by stroke – whether you’re the one in the hospital bed or the one trying to hold everything together at home – their story offers something rarer than statistics: honesty, hard-won perspective, and the reassurance that even when the brain rewrites your script, there can still be a future worth learning to live in.
