The stroke sent us on a journey that we were ill-prepared for

Even with their specialist knowledge, when neurologist Udo Kischka had a brain bleed, he and his psychologist wife Helen found the road to recovery difficult. LISA SALMON reports

AS A neurologist and expert in stroke rehabilitation, Professor Udo Kischka could only imagine the emotional and physical anguish his patients experienced. Then, 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,” Udo 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 Udo 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, Udo 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, Udo had recovered sufficiently to start working on a book with Helen. 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 the stroke better?

“I THINK we were advantaged, not least because we were well-connected within the local neuro-rehabilitation world,” says Helen.

“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, Udo? “MY journey towards independence has continued very slowly, and I’m far from where I hoped to be by now,” says Udo.

“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 rollercoaster 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 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 Udo. “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.” Helen 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.”

Is there anything that 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 Udo. “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.”

Helen 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.”

Professor Udo Kischka