Stroke Recovery

Have you or a loved one had a stroke?

On 13 November 2007, my husband had a transient ischemic attack. I recognised the signs of stroke and called an ambulance. He was in the emergency department within 90 minutes. Sometime within the next 24 hours, whilst in the hospital, he had a "real" stroke that left him paralysed on his left side.

Both of his carotid arteries were badly blocked at the time of the stroke. One closed totally, causing the TIA, some plaque dislodged from the other, and lodged in his brain causing his stroke. Over the next month, he had some preliminary rehabilitation and a stent inserted in his left carotid artery. He was discharged from hospital before Christmas and started an outpatient rehabilitation program for about five months.

At that point, the rehab doctor had decided that he had achieved all he was going to, and didn't want to see him again. Basically, we were on our own when the program ended. He could walk, albeit for short distances and awkwardly. He could talk. But his left arm and hand were pretty much useless. And I knew that there were other subtle changes that I didn't know how to describe properly. I had asked for a cognitive test and the occupational therapist did some very simple testing that told us nothing.

With no ongoing rehabilitation activities, his physical capabilities declined. We searched around and found a number of therapies that we could do ourselves. We got him into a public rehabilitation program, where he  saw a rehab doctor every few months. He continues to monitored by the neurosurgeon and neurologist annually.

But my overriding concern was:

Why is no one offering a coordinated approach to the rehabilitation effort?

The physiotherapist works on something for a while, the occupational therapist works on something else. Maybe they chat, but it doesn't seem to be the case - and this is in our experience at three hospitals!

The rehab doctor might talk to the physical therapists, but doesn't seem to do anything apart from have a chat with us and say you're making a reasonable recovery. I bet it would be different if THEY were the ones who had the stroke! I bet then they'd be a lot more focused on a coordinated care effort!

We also read a book that inspired both of us. It gave case study after case study of stroke patients making a big recovery. This led to further reading and research. The interesting topic of brain plasticity came up again and again. This is the brain's ability to adapt and work around a brain injury. What continues to stagger me, is that no one in the medical profession gave us a glimpse of this! I heard about the book whilst listening to an interview on the radio!

It was incredibly hard to find useful information to support both my husband and I. We needed to understand what was happening and what the stroke recovery approach was. But information from the stroke support services was high level and non-specific. Information from the medical people and physical therapists was specific to their own domain - despite them being caring and well intentioned.

And so, this website was conceived.

First, we are providing information to help you through the first few months - time when you're just in crisis mode and can't think beyond the next few hours or days.

Most importantly though, this website contains what we've learned about how to make a significant recovery from stroke. We're not there yet, but the improvement in the last few months, as a result of taking a holistic approach has been more dramatic than that from the individual therapies.

A stroke doesn't just happen to one person. It happens to the stroke patient and also to the caregiver. Family and friends need to adapt to the changes that have taken place. This website is targeted to this broad audience. And it's intent is to be practical. We will provide some overview information and also the learnings from our experience. Good, straight forward advice about how you as a caregiver, family member or friend can help.