Renee and Simon's stroke journey

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Renee Lobley's life changed forever in 2010 when her husband, Simon, suffered a stroke.

It has been a long road to recovery, a journey made even more difficult by the limited follow-up support available to their family. Renee and Simon's story is not unique and a reason why The Stroke Foundation established My Stroke Journey; a resource for stroke survivors and their carers.

Renee shares her experience and the tumultuous time they all encountered following that fateful day, and the role My Stroke Journey could have played in Simon's recovery and supporting their entire family.

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Tell us about your husband's condition and what happened the day of his stroke?

Simon was been diagnosed with a heart condition known as, tachycardia, and on further investigation, his diagnosis was changed to atrial fibrillation, which is an irregular heart rate. 

While we understood that he was at risk of a stroke, we never imagined that it would actually happen. But it did. In 2010 at 43 years of age, Simon was about to go to work one day when he suffered a stroke. It was incredibly scary and in so many ways changed all of our lives.

What were your experiences immediately following Simon's stroke?

After Simon's stroke, I was so worried about his wellbeing and it was very confusing as to what to expect. Our grandparents had survived strokes and we had seen the affect it had on their lives. 

When it was happening to us we had a young family to care for (our kids were 14 and 12 years old at the time) and our thoughts were all over the place. We had no idea what the long-term impact would be on Simon and his quality of life, and how this would affect the whole family.

My Stroke Journey wasn't available to you and your family following Simon's stroke. How do you think you all would have benefited from such a resource?

When this happens you really have no idea what to do, who to turn to or what help is available. It not only impacts the person who has suffered the stroke but also those around them. My Stroke Journey provides a single source of information that you can turn to. For me, that would have been invaluable and better equipped me to support Simon and also the kids.

Looking back, I wish I had journaled some of the conversations I had with nurses, doctors, physios, occupational therapists, etc. At the time, most of the information was foreign to me and communication with Simon was limited because of the stroke. If this information was recorded, we could have gone over it again when Simon was ready. It would have also provided a resource that the kids could read and gain a greater understanding of what was happening with their dad.

Additionally, not all visits from the doctors or specialists are scheduled in hospital, which meant I wasn't always present to hear what was discussed about Simon's condition and his progress. It would have been really beneficial if these conversations were documented or highlighted as part of My Stroke Journey and then shared with family, carers or other medical professionals at a time that suited.

How important do you think support services like My Stroke Journey offered by Stroke Foundation are to families and carers in this situation?

We learned quickly that the stroke journey doesn't end once you're discharged from hospital. In fact, in many ways it's just the beginning of the journey. Any additional support at that time would have been invaluable. 

The first few months were the hardest. I had to return to work, kids were at school and Simon had to comprehend life after a stroke. Once we all adjusted to our 'new normal' and were ready to talk about our experience or ask questions, it would have been great at that point to have a resource like My Stroke Journey to turn to. Simon had a great GP that he regularly visited, but as a family we never sat down and discussed our thoughts, fears or how this impacted us individually and as a unit. 

What more do you think can be done to support survivors of stroke and their families?

Having access to My Stroke Journey ensures everyone is aware of the support services available when they are ready to use them; be it months or even years following the stroke.  

Simon experienced further complications after the initial stroke, which we had no idea was possible or how it could further impact his life. Information about further risks and issues would have better prepared us for this and the services available to help us deal with the situation. 

Knowing what support services were available after the initial rehab program would also have been invaluable. Simon did six weeks in rehab as an outpatient but following that we thought that he would benefit from in-home speech therapy. We didn't know how to access this so we rang around until we found an appropriate therapist. Simon really enjoyed his weekly sessions and saw great improvement in his speech.

What do people need to know more about with regarding stroke? 

From our perspective, the most important message is that it's not an "old person's illness". As I mentioned previously, we had grandparents who survived a stroke but never for a moment expected anything like this to impact our lives while Simon was so young. 

Simon describes the experience as his brain being rattled and as a result he had to leave work. The brain has an amazing capacity to heal but the process and progress is slow. Although he's not back to his original self, he is improving every day. 

Seven years on, Simon is starting to enjoy the simple things in life that we previously took for granted. He has started mowing lawns, which has given a wonderful sense of worth, improved his self-confidence and also provided a little bit of normality to everyday life.

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Since 2015, we've been a supporter of Stroke Foundation's My Stroke Journey that has better equipped stroke survivors and their carers, like Simon and Renee, to ensure they have fewer unmet needs, are better able to manage ongoing issues and disabilities, and reduce their risk of having another stroke.

To date, more than 4,000 stroke survivors and their family have received the My Stroke Journey pack, ensuring they are supported and informed as they undertake what is arguably the toughest journey of their lives.

Click here to find out more about our partnership with the National Stroke Foundation.