Trish Brice

What is your role on the Committee and what does it entail?

My name is Trish Brice and in 2014 I volunteered to assist with Telephone Support for the association, a role which Mary McAlister had filled so faithfully since 1990.

Can you briefly share your GBS/CIDP experience?trish brice 300x397

The insights I bring to this role come from the perspective of wife and caregiver to my late husband, David. In 1990 he was part of the small group of dedicated GBS people, who along with Prof. JG McLeod and Prof. J Pollard, at The University of Sydney, agreed on the vital need to form a support group for those whose lives were affected by GBS.

Without David’s physical presence in my life, I hoped to be able to help others who were impacted by GBS and to assist the family members and care givers of those living with GBS, having had the lived experience of a spouse and carer for David. I wished to stress the importance of mental resilience which I had witnessed in David’s life as he recovered from recurring episodes of GBS.

Globally, David’s history with GBS was very rare in that he experienced six attacks of varying severity, from the age of 14 years to the last attack in 2012 at the age of 62 years. The severe attacks had necessitated tracheostomies in ICU each time and complications from the fourth tracheostomy led to David’s death in 2012.

Despite the complex nature of GBS for David, his life was a very positive one and it is with this spirit of positivity that I joined the association in 2014. He was a fighter for the rights of people with a physical disability who understood the lived reality of disability. Despite the many setbacks, David worked full-time as a Senior Advocate for major disability organisations and was able to improve the lives of many people for whom he advocated, liaising over many years with government authorities, including advocacy for the NDIS to the Productivity Commission in 2011.

In 2012 a message of condolence was sent to me by The Governor General, The Hon. Quentin Bryce, Patron of SCIA, of which David was President at that time.

“David was a source of courage, support and inspiration to me and to so many people and a truly lovely man. I was always uplifted by my conversations with him - always shining through - that generous warm spirit. He leaves a powerful legacy – a life that made a difference. My affectionate greetings to you with my admiration and respect for the important work you two did together for others.”

What inspires you everyday?

We cannot control our circumstances always but what we do with them can change our lives and those of others for the better. That is the motivation for me – just to do my best for those who call our association seeking assistance, when their situation is often so difficult for them personally or for a loved family member.

Do you have anything else you would like to share?

To honour the legacy of the founding members of our association is important to me – to connect with each caller in order to lessen the sense of isolation so common when a rare syndrome is experienced.