Never Say Never

A very common question after a stroke is ‘How much will I improve?’

There are lots of different factors that influence recovery and there are some unknowns too. Just like everyone’s stroke is different, everyone’s recovery is too. When discussing this with you, stroke health professionals will consider:

• The area of your brain that was injured and how badly.
• The effect of any treatment you received.
• How you respond to rehabilitation.

It’s still difficult for them to be definite about what will happen. They may instead talk about what is likely to happen.

Not knowing how much you will improve is hard and it can be difficult to make plans. Sometimes it’s tempting to push for answers and to be frustrated when you can’t get definitive advice.

On the other hand, you may hear the words “You’ll never….”

These words come in many forms – “you’ll never walk again”, “you’ll never talk again”, “you’ll never work again”… They may have been spoken by a health professional, a loved one or even your own frightened inner voice.

But as the many stroke survivors know, and many health professionals advise, “you’ll never” does not have to become part of your vocabulary.

Emma Gaffy - grit and determination

Emma suffered a stroke in 2003 at the age of 19.

At first, Emma was told she would never return to study, drive, live independently or have a social life like other people her age. She said this reaction to her stroke confused, angered and astounded her.

“Doctors should not assume every patient has the same future ahead of them. A lot of achievements are based on strength of character and the desire to regain abilities,’’ Emma said.

“I have reached many, if not all of my goals. First came walking, then speaking, independent travel, two university degrees, living independently, starting my own business and the list goes on.”

Emma believes health professionals should focus on the potential positive outcomes, rather than the negatives.

“At one time I couldn’t speak – and now funnily enough - my business is in communications and I talk, write and create content for a living,” she said.

Shelagh Brennand – when it’s okay to say ‘never’

Shelagh Brennand’s doctor told her there’s every chance her life would return to normal after she suffered a stroke in 2013. Shelagh’s physician also thought she could probably go back to her career as a private investigator.

The company Shelagh worked for welcomed her back and gave her a small job, but the anxiety and stress was too much.

“I got so anxious because I wasn’t as sharp as I was before the stroke and thought I would miss something. I was frightened I’d do a rubbish job,” Shelagh said.

“I experienced fatigue and spent a week in bed after working for three days.

“In this case, I was the one who decided to say ‘never’,’’ she said.

Shelagh suffered depression and experienced a grieving process in which she felt like she was not going to be able to do anything useful. But she found poetry and learned to be grateful for what she had.

“My limbs worked. I could climb, I could run, I could cycle, so I thought life is pretty good actually,” she said.

Dr Juan Miguel Rois-Gnecco, Rehabilitation Physician – never say never

Dr Rois-Gnecco steers clear of using the word ‘never’ with stroke survivors.

“There is clinical evidence to support the prediction of a better or worse functional outcome, but this is not always accurate and does not take into account the participation effect required for successful rehabilitation,” Dr Rois-Gnecco said.

“Stroke survivors in rehab are at their most vulnerable. You need to strike a balance between providing therapy and encouragement, but at the same time, be cautious not to provide false hope.

“Focusing on function and setting realistic goals is always a good start. It’s a dynamic process and constant review of goals is mandatory.”

Dr Rois-Gnecco said it was important a survivor’s rehabilitation team is united in its goals and expectations for the patient, ensuring there were no mixed messages about recovery.

“When the time comes to have ‘the conversation’ with a patient, they often have already come to a better understanding of their functional limitations, and in most cases have been given a good go at improving their deficits,” he said.

Associate Professor Susan Hillier – what is likely and what is not so likely

A/Professor Susan Hillier said there was little evidence to support any statement that says “never” and advises health professionals not to use the word.

“The language should always be about what is likely and or not so likely,” A/Professor Hillier said.

“None of us are omnipotent, none of us has a crystal ball. I have seen amazing recovery and I have also seen people deteriorate when they give up.

“While the strongest evidence is for early and intense rehabilitation, people can make gains more than a year after their stroke.’’

A/Prof Hillier encourages health professionals to help people find a balance between hope, engagement and realism for patients.

“Everyone is unique and we should help them build their own sense of self-worth and self-efficacy,” she said.

A/Professor Hillier also has some advice for stroke survivors.

“Don’t pressure health professionals to make big predictions. Find a way to accept that the future is unknowable, which can be difficult when you are looking for reassurance or clarity,’’ she said.

“Try to find the balance between too much hope and too little hope. Accept the stroke has happened and find a way to work towards your goals.”