Living Beyond the Tremors – My Journey with Parkinson’s by Caroline Gilbert
This is a truthfully refreshing anthology, self-published by the incredibly talented and brave Caroline Gilbert. Living Beyond the Tremors – My Journey with Parkinson’s, is a bittersweet combination of absolute devastation and frustration of what Parkinson’s takes from a person living with the condition, as well as a humorous approach in some of Caroline’s pieces, and shows how much her family means to her and loves and cares for her too. The book is dedicated “To Bill, my friend and steadfast companion through the challenges of Parkinson’s.”
This book contains a combination of prose, poetry and diary-like pieces. Caroline states at the start of the book in ‘Note by the author’ about her works being “unpolished” and “punctuation falters” – Caroline I say this from my heart, I am a writer, not an editor, but I am also a reader and person, I wouldn’t have changed a thing…your book is awesome, as are you!
I don’t have Parkinson’s, but I do have numerous invisible conditions that has taken so much from me. When they are chronically debilitating and you rely on others so much, it can be extremely upsetting making one feel guilty, angry and a burden. I had the privilege of going to school with Carline’s beautiful daughter Louise, (one of the few good eggs in school) – I am only sorry we lost touch, with life etc!
Parkinson’s invades your body and your mind
Caroline’s writing shows us how Parkinson’s invades your body and your mind, how day to day tasks often feel like an overwhelming obstacle course. She writes some of the physical complications of Parki (her name for the condition) from weight gain, to loss of mobility with “Back crumbling…” -‘Essence of Parkinson’s’ to the invisibly physical such as “Eyesight failing” to the mentally invisible “Sleep deprivation, …agitation, Anxity, sadness,” to the visible mental difficulties, …”hallucinating…voice mumbly…hesitation,” and so on.
This book was first published in 2024 and now over halfway through 2025 it must be 17 years now, “Since I started living with PD” – ‘In The Beginning’. Being diagnosed with awful conditions is like being given a jail sentence to a degree, I’d imagine and that grief for all the things planned in the future, that won’t be.
‘Me and Parki’ document the tribulations in great detail, it’s harrowingly sad to read, never mind have the condition. And as I know from my conditions, it isn’t just me that it affects, it affects my husband and our two children 14 and 12.
‘Another Year Over’ states that there is “still no cure” and that the rigamarole of life will continue its carousel routine of prescribed pill-popping, and the same old, same old medical appointments, ‘A Visit to The Doc’, “How is your mood?”……same question again…When the meds kick in, I could strive forever… So I’ll do my best to carry on”.
My blood boiled at ‘A Poem While You Wait at The Airport’ that typical judgemental, uncompassionate a$$h*le, who gives looks or comments and how Caroline felt embarrassed in her wheelchair at the thoughts of ‘THEM’ thinking of her skipping the que and that Caroline would actually rather stand in line and be able to have a ‘normal/typical’ life. Caroline “is writing for the silenced voices of PD” – ‘The Victims of PD. I am the same when people tell me I’m lucky that I don’t have to work!! I wish I could. I use my writing as a way to advocate and highlight disabilities and illnesses especially the invisible ones.
The blurb for Living Beyond the Tremors – My Journey with Parkinson’s
A raw and inspiring journey through the life of Caroline Gilbert, who has faced Parkinson’s disease with unyielding courage and grace. This moving collection of poetry and reflections brings to light the hidden struggles, profound resilience, and moments of humour that define living with a chronic illness. Written with honesty and heart, Living Beyond the Tremors is a tribute to the strength of the human spirit – a must-read for anyone seeking understanding , hope and inspiration.”
Some of the royalties for this book will go to Parkinson’s Ireland. And with Invisible Disabilities Week 19th-26th October 2025 some of you may purchase a book for yourself or a loved one and help share knowledge and understanding for Parki.
I deliberately didn’t edit quotes or texts from Caroline’s book, leaving them as they are published in the book to show Caroline who wrote, edited and published her book without a traditional publisher, that her words, story and lessons written from her heart is what matters especially in cases of books like these. CONGRATS Caroline!
(c) Grace O’Reilly
Order your copy online here.
And read more from Grace O’Reilly on Writing.ie here.
