MSA Trust


Walking Kingsand to the Lost Gardens of Heligan

Frank James writes about organising a fundraising walk in memory of his wife, Joyce… 

I recently lost my wife to MSA.  Joyce and I married in 1967 and together spent many happy years building a home and family, we have two daughters and three grandchildren.  For the majority of our married life we lived in the north of Scotland before moving to Lancashire in 1997.  Around 2010 Joyce began to be troubled by uninary track infections and balance issues.  By 2012 she had undergone intrusive bladder investigations that found nothing sinister.  On 5th November 2012, following 3 days of tests, she was diagnosed with A-typical Parkinson’s.  In August 2014 we moved to West Sussex where we sought further opinion.  In December 2014 Joyce was finally diagnosed with Multiple System Atrophy.  By this stage she was already wheelchair bound and struggling to communicate.  Over the next 3 years Joyce bravely dealt with everything that was thrown at her.  She gradually lost her ability to move any of her limbs and could only communicate by blinking or gazing her eyes.  She struggled to chew and swallow food, eventually everything she ate had to be pureed.  Throughout it all she never complained and somehow maintained a sense of humour and a very sharp wit.  I lost Joyce on the 9th of September.

During our lives together we developed a shared liking of walking and gardening.  While in Lancashire we walked the entire length of the Lancaster Canal.  Joyce loved gardening, she created three bespoke gardens and loved visiting gardens open to the public whenever she could.  To commemorate Joyce’s love of walking and gardening, it is my intention, along with our daughters Shirell and Andrea, to walk from Kingsand to the Lost Garden of Heligan along the South West Coastal Path in Cornwall. The walk will be done to raise funds in memory of Joyce and all funds would go to the MSA Trust.  Details of the walk can be found here

Funds we raise will be used by the MSA Trust to help train Health Care Professionals so that they become more aware of MSA and how best to provide care for patients diagnosed with the condition.  My experience during the progress of Joyce’s illness, was that staff in the local hospice, and hospital, had not heard of the illness and did not know what the symptoms were or how to deal with them.  We hope that we will be able to go some way to change this for the better.

The fundraising walk that Frank and his daughters are doing in aid of MSA Trust is an open challenge and anyone is welcome to join them. The walk will take place from 12-18th May 2018 and supporters can join the team for part or whole of the walk. Further details can be found here – If you, or anyone you know, would like to join this event please email or leave a message on the Facebook event page.


Joyce James

Disclaimer: The views and opinions expressed in the blogs published on these pages are those of the authors and do not necessarily reflect the official policy or position of the MSA Trust.

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