Hello EnableMe member

Last week was World Stroke Day and the theme was "Up again after stroke".  Across the globe millions of stroke surviors, their loved ones and supporters celebrated life after stroke. As well as celebrating life after stroke, the day also recognised the often long and challenging journey stroke survivors and their loved ones take in recovery.

In today's EnableMe newsletter we share stories of what getting up again after stroke means to members of the EnableMe community. We celebrate milestones, talk about the ups and downs of life after stroke and look at how important it is to get your mind right. 

Also in this newsletter, we're looking for survivors, carers and family to be a part of the Stroke Guidelines Project. In a world-first, ‘living stroke guidelines’ are set to accelerate access to world-class, evidenced based treatments and care. Click here to find out more.

Margaret shares just how far she has come since her stroke in 2001.

We look into how important it is to get your mind right and how vital it is to focus not only on your physical recovery, but your emotional recovery as well.

Shelagh shared her recent meltdown. She wants to remind you to never give up, and have faith in your abilities. And Paul dares to dream! 

Lastly The Centre of Research Excellence in Stroke Rehabilitation and Brain Recovery invites you to a stimulating afternoon of stroke research on November 30, which you can attend in person or online. 

• Canadian researcher Sean Dukelow will present 'Using robotic technology to better understand and enhance stroke recovery'.
• Snapshots of current stroke research focussed on working age stroke.

All this and more!

• Click here for all EnableMe newsletters.

 

There is still time to book your tickets to hear EnableMe member Marcus share his experience at Stroke HQ Melbourne and Hobart.

Click here for the full EnableMe podcast series.

Forums:

• QldSWe: Life insurance post stroke
• Julie: NDIS & how others deal with plan, etc?
• Cindy Loo: TIA two weeks ago, what should I do?
• Diana: Improving Smartphone use after stroke.

For all forums click here

Blogs:

• Katrina: Are we there yet?
• Sue Bowden: WORLD STROKE DAY 2018
• Health Check: How much physical activity is enough in older age?
• Nick Tolliday: Wondering about stroke survivor’s experiences with yoga.

For all blogs click here

Ask a question:

• Lauren Alice: What’s the difference between the signs of vascular dementia and other dementia?
• Hy: Why I still feel fatigue and weakness now and then after 2 years and half, is that normal for any stroke survivor?
• Dean: How can I lessen muscle spasms in my trunk? They pull me sideways, usually to the left.what stretches and what recovery can I do at home?

Click here for questions asked by your fellow community members. Perhaps you can contribute some of your own experiences, learn something new or ask a question.

We are bursting with happiness at the arrival of Olivia – the newest addition to John and Amanda’s beautiful family.

Amanda says, “The fact she is even here after what John went through makes her our little miracle. Olivia was sent to us, she knows exactly what her Daddy has been through and is his real-life guardian angel. She just stares at him with so much love, it melts my heart!”.

Read more about John and Amanda here.

We all know making physical activity a regular habit is important for health and well-being. But health promotion messages are often aimed at children and young people, with less focus on the importance of physical activity for older people. However, older age is a crucial time for being active every day.

I thought it pertinent to post about not giving up. Yes, it’s tiring, frustrating, sad and bloomin’ hard at times, but our rehab from stroke HAS to be ongoing! Whether it’s days, weeks, months or years, please never give up trying and doing and have faith in your abilities.

I had a mini meltdown last week. Why? Because I’ve been doing too much and trying to be everything to everybody and eventually realised I’m not Wonderwoman and need to slow down for my own health.

The Stroke Foundation is calling for expressions of interest from the community to join a Consumer Reference Group. Members of the group will provide input in to the content of the guidelines, drawing on their lived experience.

Along with our partner Cochrane Australia, will test a model of 'living' stroke guidelines. This model will ensure new research is included right away rather than wait many months or years. This work is funded by the Australian government over three years.

In the days, weeks and months after stroke attention can be so focused on a persons physical recovery – getting them walking or using affected limbs – that their overall wellbeing is ignored.

Research shows mood is frequently affected following stroke, with depression the most common mood disturbance limiting a persons ability to recover and their quality of life.

Often after a stroke an individual doesn't understand what they are feeling or why, making it vital for health professionals, survivors and their families to discuss mental and emotional health as part of stroke treatment and recovery.

A mental and emotional health assessment, treatment and information must be included as part of routine care.

Psychology and neuropsychology resources.

The Centre of Research Excellence in Stroke Rehabilitation and Brain Recovery invites you to a stimulating afternoon of stroke research on November 30, which you can attend in person or online.

First Canadian researcher Sean Dukelow will present 'Using robotic technology to better understand and enhance stroke recovery'. 

Followed by snapshots of current stroke research focussed on working age stroke.

And there will be a panel of young stroke survivors sharing their experiences in a ‘Q&A’ type session, hosted by Prof Julie Bernhardt. For more 

One morning in 2001, I got up and realised I had some numbness in my left leg. However I was able to walk so I went to work as usual.

It wasn’t until later that night that alarm bells really started ringing for me. I was in the bath at home and realised I couldn’t feel the hot water on my left leg. I knew something was terribly wrong.

Your family member is discharged from hospital and you are ready to continue their rehabilitation. These steps may serve as a guide if you wish to develop a program using free or low-cost resources in your community. 

I played amateur sport in my life before my stroke. I went to the Maccabiah Games in 2005 in a manager role and I loved the social aspect and meeting like-minded people. 

After watching the Paralympics and the Commonwealth Games this year, I thought - what about me?

P.S. Join Paul and advocate for stroke in the lead up to the Victorian Election. Download and print off this flyer for when your local MP or candidate knocks on your door. You'll be ready! 

Kate, her family, you the stroke community are why we’re striding-for-stroke in November.

We’re asking you to join us, and stride to fight stroke. To recognise the lives saved, the lives lost and to help the next generation of survivors find their way forward when stroke strikes.

Please join us today #Stride4stroke

We are working with the National Heart Foundation to develop a National Heart and Stroke Action Plan, funded by the Federal Government.

The action plan is an opportunity to avoid premature deaths and save lives through a coordinated response to cardiovascular disease – stroke and heart disease.

Last week survivors came together to give their perspectives of what should be included in the action plan. It was a very honest and robust discussion and in the next few weeks we’ll be sharing a survey to gather your insights.

Stay tuned for you opportunity to be part of this exciting project!

Remember, if you need help or have any tips to help improve EnableMe, we would love to hear from you at enableme@strokefoundation.org.au

We look forward to assisting you in your recovery and helping you to live well after stroke.

Many thanks,
 

Diana Kerr | Online Community Coordinator
National Stroke Foundation | Level 7, 461 Bourke St, Melbourne VIC 3000
T +61 3 9670 1000 |StrokeLine: 1800 787 653