Stronger after ‘our stroke’ and living with aphasia

Like most people, Bridget and John Noble had never heard of aphasia. Their introduction to the disorder came when John had a stroke.

The stroke damaged the part of his brain responsible for language skills.

He had aphasia. He had to learn to read, write and speak again.

More than three years into his ongoing recovery, John, 83, can do all of those skills well once again, and he and Bridget, 76, want others to know that stroke and aphasia can be a chance at a new beginning rather than an end.

John’s ‘restart’ happened at home early one morning in February 2021.

“John had a wake-up stroke. He woke up and fell off the bed. That’s what I heard at 3.15am,” Bridget says.

“He fell off the bed, and I let him sort of adjust to the fact that he’d fallen off the bed, and suggested he get back on the bed if he could at that time.

“I asked him a couple of questions and his conversation was a bit odd, so I rang triple-0 straight away and by 4am, he was in hospital.

“They took a CT scan and he was told he’d had a big stroke.”

The two go-getters had just started a new business and John’s stroke turned their world upside down.

Bridget’s response was to arm herself with knowledge.

“I went into the book seller, Book Deposit Co, UK, online and ordered everything I could find on stroke,”  she says.

“Once I ordered the 15 books, two or three came to me at absolutely the right time to read them.

“I’d pull a book off the shelf and I’d think, ‘Shivers, I’m ready to read that now’. Those were the kinds of things that happened to me.”

Two titles which Bridget found particularly helpful were My Stroke of Insight, by Jill Bolte Taylor – a neuroanatomist who turned her own massive stroke into a positive recovery story, and Stronger After Stroke: Your Roadmap to Recovery, by Peter G. Levine.

“Every morning, I would get up at 4am and read it,” she says of Stronger After Stroke.

“I had to learn everything I could about the stroke because no one was helping me understand, really, where we go from here and I needed to know.

“I’m one of these people: I come from a medical research background, my family were medical, and so it was research.

“I wanted to know if there was going to be a future. I wanted to know what was going to be happening to either of us or both of us.

“I call it ‘our stroke’. We had a stroke. It’s not to do with one person at all.”

The book title became Bridget’s mantra for John.

“These are the three words I would give to John every day: ‘This is where we’re going, mate. Stronger after stroke’. Building the belief, building the positivity about it all,” she says.

“He was Mr Optimistic before the stroke anyway and he accepted the stroke straight away.

“Whatever he could understand about anything, he thought, ‘Too late. It’s happened. We’re here. We’ve got to do something about this. I don’t know what, but let’s go from here’.”

Bridget admires her husband for his let’s-just-get-on-with-it attitude.

“Acceptance is a very hard thing to get when you’ve literally lost your identity, when you’ve lost your ‘life’,”  she says.

John tends to let Bridget do the talking but is happy to chime in during the conversation: “I didn’t know what  I was going to be or what was going  to happen.”

He was not fearful about what lay ahead: “No. I said, ‘Just do it’.”

John’s brain needed time to recover from the damage and reprogram. The hospital environment could sometimes be over-stimulating.

Bridget says a turning point in hospital came when John overheard some music by one of his favourite singers, Andrea Bocelli. She raced out and brought in more CDs.

“All of a sudden, he had something to live for,” Bridget says.

John spent two months in hospital, undergoing six hours of physiotherapy, occupational therapy and speech therapy a day before entering a transitory phase aimed at getting him home.

Since then, they have sourced their own rehabilitation.

John’s journey back into language began with pictures that he could point to, expressing his basic needs.

The damage to the left side of his brain made his right arm flaccid but he regained movement with therapy.

“We had it in a sling and all of a sudden, when they started working on the left side, his right arm started to lift up and they whipped off the sling just to work with the right arm and kept going,” Bridget says.

“That was really good – starting to spontaneously come back.

“The brain can mirror things.

“It’s very clever. It’s been a very fascinating journey.”

Although John can use his right side, his brain sometimes forgets to do so, but there are few giveaways that he has had a stroke or could not speak.

“If you didn’t know John had had a stroke, you wouldn’t know John had  had a stroke. So, we’re very lucky,”  Bridget says.

“It’s taken three years for John to get to this far and it will keep on going for who knows how long.

“He’ll keep recovering for as long as he chooses to work at it.

“That’s the joy about stroke: that you choose to keep recovering because you’re working on it all the time. It’s how much work you want to do, how motivated you are, what’s important to you which can make a difference whether you do or you don’t (keep recovering).”

Bridget and John want others to be aware of the signs of stroke and act fast.

“Time is brain,” Bridget says.

“Don’t muck about. If you get  some weird sensation in the brain, headaches constantly, unusual feelings, go to hospital.

“But not only go to hospital. Make sure you’re not discharged without having a CT scan or an MRI because a lot of younger people are not expected to have a stroke, so they’re just discharged. And within a few weeks, they’re in there with a stroke and it could have been prevented, or potentially been prevented, depending upon where or what.”

Bridget says everyone should learn the signs of stroke: FAST – Face, Arms, Speech, Time.

“If their face droops, or they can’t raise both arms or can raise one and can’t raise the other, or raise it but it falls down again, if speech is slurred or confused, get an ambulance – fast!” she urges.

“Don’t wait and don’t try and drive yourself. And don’t get someone else to drive because you may have another event in the car and they’re driving.

“If you’re the person that’s attending to them, make sure you go with them because you don’t know which hospital they’re going to take him to and you’re driving around trying to find them.”

The Nobles recommend stroke survivors and their family and friends stay positive and not give up.

The couple refuses to describe a stroke as “distressing”, choosing instead to describe it as “very challenging” and referring to an “event of a stroke” rather than “suffering a stroke”.

“Victim of a stroke” is also not part of their vocabulary.

“Well, you’re never a victim. You’re a survivor, a thriver and a champion,” Bridget says.

“We all use very positive language about anyone who’s had a stroke because there’s joy in a stroke, dare I say it, because there’s an upward trend with the recovery if you do the work.”

The Nobles are now committed to helping researchers, such as those at the Queensland Aphasia Research Centre, and to educating others about the potential for recovery.

“We took a catastrophic event and turned it around into something really positive,” Bridget says. “We call it our ‘stroke of genius’. It’s changed our lives in so many ways for us to be able to contribute. It’s given us purpose.”

What is aphasia?

The Canadian Institute of Aphasia defines aphasia as “a language problem that masks a person’s inherent competence, and most dramatically affects conversational interaction (talking and understanding), as well as the ability to read and write. Without the ability to participate in conversation, every relationship, life role and almost every life activity is at risk.  With additional reading and writing difficulties, the impact  is devastating.”*

*The Nobles redefine it as  very challenging rather  than devastating.

Current global statistics:

• one-in-four people will have a stroke in their lifetime
• 40-60 per cent of stroke survivors will have some degree of aphasia.