Alison Bakker: Life after stroke

What happens next, after discharge from rehabilitation; when you’re home at last but with the big wide world looming and no further support from your hospital?

I’d been working in public hospitals for 25 years before I had my stroke so I knew how the system worked, which helped. I was fortunate. But what about the people without those connections, without the family close by, without transport or computer access? Interestingly, I’ve never met a stroke survivor who hasn’t had ongoing needs. I’ve discussed this with people I know in rehabilitation. We saw the need for something more. A resource months or even years later, like a stroke nurse.

So I was interested when listening to the ‘Health Report’ on ABC’s Radio National. They had a fascinating story on rehabilitation after stroke. The host, Dr Norman Swan, interviewed Professor Anthony Wars, a neuro rehabilitation specialist at the University Hospital in North Staffordshire, UK.

What sparked my interest were his comments on life for stroke survivors after they had been discharged home. “What we’re tending to lack at the moment is ensuring that people are followed up properly,” Professor Ward said.

He had just completed a pilot study in which a practice nurse had assessed people on 11 criteria for such things mobility, spasticity, pain, continence, mood, cognition and how to prevent further strokes.

“It was a good way to introduce the whole question about life after stroke, and in particular the areas that were of greatest interest were relationships with families and returning to activities,” he said.

After people were assessed they would then be referred to the relevant service. Returning to life after stroke isn’t that easy. I went from being a fully functioning mother/nurse/wife to a person living with a disability in four short months. Not a lot of adjustment time! It was a physical, cognitive, and emotional rollercoaster and it took an awful lot of doing for both me and my family.

When I look back, my expectations were so unrealistic. To have had a stroke or practice nurse see me after I was home to address some of my remaining issues would have been useful. To help readjust my expectations, tell me what to expect next and help with finding specialist help like a good physio, occupational therapist or podiatrist.

As it was, I chanced upon a lot of the stuff that I would need. Like a great neuro-physiotherapist. Word of mouth was also useful from other stroke survivors or carers and it was reassuring to know I was normal.

The National Stroke Foundation has also been a great resource with its online Fact Sheets and the StrokeConnect Online forum. I’ve learnt so much on the forum, such as sticking my hand flat under my pillow to stop spasticity at night or cutting down on caffeine for fatigue prevention.

So if you have got some ideas on improving stroke care, the National Stroke Foundation is conducting survivor/carer forums in July in most capital cities, to find out what we think and to define its priorities for the next five years.

They want to hear our first-hand experiences of stroke. Come in and have your say, give your perspective and your ideas - because they are invaluable.

For the forums in July, I think Professor Ward’s stroke practice nurse is great idea both for an initial assessment and as an ongoing resource… that would be my two penneth worth!

To become a StrokeConnect member please call StrokeLine 1800 STROKE (787 653)

Alison Bakker is a stroke survivor and sometime writer. She lives in Melbourne with her husband and two children, and works part-time as a registered nurse.