An interview with Barrie Smith on Awareness through TikTok on September 5, 2023 by George Ackerman, Ph.D, J.D.
Please tell me a little about your background.
My name Is Barrie Smith & I have lived with a diagnosis of Early onset Parkinson’s for 19yrs although it is now believed I was symptomatic for 17yrs prior to diagnosis. I am a married man with two daughters, and I live in Birmingham in the UK.
Can you tell me more about your advocacy?
I volunteer with a leading charity Parkinson’s UK. And have done for approximately 12yrs my role is wide helping raise general awareness. service improvements in health & Social Care, fundraising and research I am also part of their training team taking part in training of staff & external agencies.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is raising awareness, but also ensuring that the newly diagnosed are assisted when they maybe struggling with the realities of life with PD, so I also have a presence on Social Media platforms FB, Tic Tok, Instagram & of course Twitter /X.
What type of goals do individuals with Parkinson’s have when seeing your advocacy?
I hope to support the search for the cure but hopefully understand that they are worthy, strong people who should expect respect and acknowledgement from Governments and wider society.
What type of training and how long are the programs?
The formal awareness training lasts for about an hour 30minutes, I also do ambassadorial speaking which can be tailored to the groups focuses.
What effect can your advocacy have on an individual with Parkinson’s?
My aim is to support people and help them retain hope for themselves and the future.
What would you like to see as a future goal for your advocacy?
My goal will always be to ensure our voices are heard.
What events do you participate in?
Events National/International i.e World Parkinsons Day, Consultative events with Government, Political Parties and related bodies such as the NHS.
I additionally support local & national fundraising events.
I write and broadcast poetry on social media about living with PD.
How does your advocacy also assist caregivers?
For professionals hopefully increasing knowledge improving practice and for families, some comfort in the knowledge that they are not alone.
How can someone get in touch? What is your website?
I don’t have a website however advocacy, ambassadorial services, research updates and individual support are available from The PUK national website and my Social media presence is usually found by using my online persona ‘Shakeybloke’.
How can others also become advocates for awareness?
Volunteer for one of the many charities, become active on social media or join a club formal or informal be with people who understand your life.
Will you ever give up?
No not until there is a cure or mortality finds me.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Together We Can Beat It! (Not my Statement it’s a PUK Slogan but I wholly support it)