Attention Stroke Survivors and Carers You are Wanted
That is Right, Stroke Survivors and Carers, you are needed because “in your life’s saddlebags” [as the adage goes] you possess a precious and much prized commodity! -LIVED STROKE EXPERIENCE.
My Dear Thrill Seekers, Fellow Time Travelers, allow me to digress for a nano-second.
This week I was on my second Zoom call for the week, being conducted by Dr. Natalie Fini from Uni of Melbourne on a Stroke research project along with a couple of familiar faces, together with 2 other Survivors whom I met for the first time.
The contribution made by this group was, as always, impressive, valued and respected by Natalie and Emily Ramage [UniMelb] and I thought to myself \{as I contributed my 2 bob’s worth] why are not there more survivors and carers involved in activities of this nature.
To me it seems that it is often is the same familiar faces. I smell an opportunity!!
That is the gist of this tome!
Access Economic’s Report on the Cost of Stroke in 2020 estimates there are more than 400,000 people in Australia living with the effects of stroke.
Which means there are a substantial number of survivors and carers who would/may be willing to participate in these activities.
Since I became involved in these activities some 5 years ago, sharing my lived experience, I have gained a level of satisfaction previously unknown to me.
There are I feel, 3 reasons why you should become involved-
- There are a considerable number of projects, either on the drawing board or about to be launched by a wide range of stroke researchers that need/require the benefit of the Lived Experience of Stroke and the After Effects.
2. Only you [fellow stroke survivor/carer] can supply those insights- you can supply the knowledge strawberry on top of the research cake [or pavlova if you wish]. Your input will be respected, no, it will be treasured!
- You get to meet an excellent welcoming group of people with whom you share a common bond and together can make a real difference to the lives of Stroke Survivors.
How do You Get Involved?
The Stroke Foundation of Australia is an excellent first stop - they have detailed information on research projects that require Stroke Survivors/Carers participation. Here is the link below
https://strokefoundation.org.au/How-you-can-help/Get%20involved/Participate-in-research
Another organization which conducts research into Stroke is the Hunter Medical Research Institute, which I have been involved in - https://hmri.org.au/participate-research
The University of Melbourne is also another one I am involved with https://www.bing.com/search?q=uni+of+melbourne+stroke+research&cvid=43107ddc67a3407a927bef067ccaa337&aqs=edge..69i57.22829j0j1&pglt=43&FORM=GEOTRI&PC=W017&isRef=1&showTw=1&isAutoP=1
These are only 3 that I have been involved with, I am sure there are many others.
My Key Messages
My point to Stroke Clinicians- when you are with Stroke Survivors and their Carers \{and it is appropriate\} tell them about the contribution they can make through their involvement in these activities.
My Point to Stroke Survivors and Carers- Be aware of the value of your Lived Experience to the Researchers. You get a sense of satisfaction that you never imagined!Works for me!!
Brian A Beh, Stroke Survivor
Lifelong Member of the Hopalong Cassidy Fan Club
Poet, Philosopher and Child of the Cosmos
Winner “Improving Life After Stroke’ Category
Stroke Foundation of Australia 2021 National; Awards,