Living with MSA – Neil’s Story
What has changed most about your life since being diagnosed with MSA?
I guess everything about my life has changed since the diagnosis. Planning for the worst and hoping for the best has probably been the fundamental adjustment in my life. Trying to stay ahead of what I am about to experience from my own viewpoint, but more importantly the perspective of my loved ones. The MSA Trust has been the key marker for me in information gathering and understanding of the disease.
Being diagnosed with MSA, the process and how it made you feel. Had you heard of MSA beforehand?
My initial diagnosis was Parkinson’s Disease. At that time, I had done the typical ‘Google Research’ prior to that diagnosis. Inevitably MSA appeared in those searches. My wife and I were somewhat relieved at the initial determination of PD. More simply put ‘thank God it wasn’t MSA’ came to mind. Nearly a year later it was as clear as it could be that it was MSA. Brutal, unforgiving but realistic. My immediate reaction was what would this mean for my wife and family. Thereafter where could I get accurate realistic information and support.
How you feel about the changes in your life?
Simply I have a life shortening and changing disease. Denial serves no purpose. However, I guess my approach is that while I can, I should get busy living. Of course, every day presents challenges. I liken it to being in a meat grinder and each day the machine is turned. It’s just a matter of how much. But I see no point in feeling sorry for myself. May be from time to time I get frustrated and angry, but I always try to see the humour in it – dark though it my be! Stay positive you are still alive and living a good life.
Has anything from the MSA Trust been helpful on your MSA Journey?
The MSA Trust has without doubt been a major factor in being able to cope with the disease and its impact. From being a mine of easily accessible useful information, to the key support offered by Katie (MSA Nurse Specialist) and Sam (Social Welfare Specialist); it has been vital in gaining knowledge and understanding. Without the MSA Trust my journey would be significantly more problematic and one more perhaps of despair and fraught with surprises. Both my wife and I are eternally grateful for all that the MSA Trust is.
What does the MSA Trust mean to you?
The MSA Trust has without doubt been a major factor in being able to cope with the disease and it’s impact.
What are the challenges you have faced?
Too numerous to annotate here but using the MSA Trust has enabled those challenges to be addressed effectively.
Is there anything you are grateful for?
Being grateful every day for what I do have. Not looking back at what I had or what I’m losing. Being able to look forward with my support network. The MSA Trust has a vital place within that network, and its importance should not be underestimated.
Disclaimer: The views and opinions expressed in the stories 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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That’s a bummer Neil. Stay strong.
So true Sue and Neil, and you are both coping so well.
Think of your courage and your love for each other and the beautiful family.
Love you .
Dear Sue & Neil I’m thinking of you both and holding you in my heart. I can’t imagine exactly what you’re going through, but having been through loss, I understand, in some way, how deeply it affects you. Your love for each other is truly beautiful.” Karen xxx
You are our hero dad, so brave, so positive, so strong. We love you to the moon and back ❤️