To research and understand Parkinsonism dementia it is essential to connect, collaborate and communicate with people living with complex chronic challenges.

By Dr Robert G. MacDonald. ARC NWC Public Advisor and a Member of The SUCI Service Users Council at ARC NWC member Edge Hill University

Living with Parkinsonism is my story from someone who has the lived experience of Parkinsonism and other multi chronic conditions. The text is based on my own story about experiences of developing and living with Parkinson’s dementia. The process of developing Parkinsonism Dementia is described and reveals it was incremental as I felt his whole life was lost in gradual stages.

I was diagnosed with Parkinsonism in 2022 and in this blog I describe my Lived Experiences of Parkinsonism and other complex geriatric conditions. Multiple conditions comprising. Bi-polar, Parkinsonism dementia, Type 1 diabetes and Autism.

At the age of 70 my life started to fall apart in an a very slow way. I began to have mid shin pains, poor balance and falls and shortly after it was a GP who suggested Parkinsonism. After a brain scan led me to a geriatric outpatient clinic where the course of my life was derailed with a single word: Parkinsonism.

I was given a large “Parkinson’s UK” document to take away and read…

Although, there are many academic and medical books about Parkinson’s Dementia that focus on its biology, its clinical sub types, its social dimension, its effect on carers and close ones, there are very few memoirs that are actually written by people with Parkinson’s themselves, hence the blog.

We need better research and understanding what’s it’s like to actually live with these chronic multi factorial illnesses but with more positive ways to live well in the community and at home.

I am very fortunate to live with my wife Mary who has taken on a considerable caring role and responsibility, including financial management, shopping and most important day to day household work.

We can never under value the role of our carers and Mary looks after our garden and home affairs because I am just not physically or mentally able to help.

I am a retired architect and the co-author with Bill Halsall of “Design for Dementia, Living Well at Home” published by Rutledge in 2024. Also “Design for Dementia” and “ Dementia Care” about nursing for people living with Dementia.

I’m a day resident of a day care centre and robins often sit on the boundary wall. One of the staff told me about the robins that visit after a resident had “passed on” and this inspired me to focus on the robins Thank you for looking at my blog.

I am also grateful to David, Toni Bewley and Susan Waterson of SUCI for their continuing support for Service Users in Edge Hill and Maniple University India.