Living with MSA – Val’s Story
What has changed most about your life since being diagnosed with MSA?
Everything! Two things in particular:
HEAD DROP – My chin is now firmly pressed to my chest which gives major difficulties in eating, talking and personal face to face relationships, where for over two years I could not see above people’s knees. It was exacerbated by a lack of understanding by some of the people offering care that the problem was NOT just a fading of the muscles holding my head up, but a downward PULL by other muscles which has been neurologically effected. The truth was gleaned from Katie Rigg and passed on to the orthotics team, who were unaware of this and whose treatments had not been appropriate – such a shame.
MOBILITY – I previously had a very active life – out and about, fell walking, energetic playing with grand-children, all lost very quickly. It’s really brought home by all the Facebook Memories that pop up as to what I was doing just a very few years ago.
Being diagnosed with MSA, the process and how it made you feel. Had you heard of MSA beforehand?
The process was handled well with the Neurology team spotting quite early that my original diagnosis of Parkinson’s was probably not correct. The diagnosis confirmed my own inkling that all was not well. I had not heard of MSA beforehand.
How you feel about the changes in your life?
A mixture of accepting it, but also wanting to make the best of it. I try to focus on what I can still do, rather than what I can’t do.
Through the Parkinson’s Group (which I joined on first diagnosis) I have made many other friends – including someone there who also has MSA – and they are very supportive.
As a practicing Christian I believe that God is doing something through all this that I cannot understand, but I feel very loved and cared for by the people in our large church, my wide circle of friends, Parkinson’s Group members, Katie Rigg and neighbours – who are accepting me for who I now am, and are overwhelmingly supportive with care and practical help. Rarely a day goes by without visitors, and quite often there will be two or more – which taken in conjunction with the Parkinsons Group Exercise activities on Wednesdays and Thursdays mean I have quite a busy life!!
Has anything from the MSA Trust been helpful on your MSA Journey?
The pack we received on diagnosis was very helpful, and the help from Katie Rigg early on set the tone – she was frank but not frightening regarding the future, and we have taken her advice without reservation on a number of matters – and we are very glad we did. We have done Voice Banking, and attend the support group whenever we can.
What does the MSA Trust mean to you?
During Covid, the Zoom meetings etc. were a real blessing. We have received so much practical help from the Trust at all levels – can’t speak too highly of you.
What are the challenges you have faced?
Apart from the Head and Mobility issues mentioned in an earlier question, the weakness in my limbs affects every aspect of my life from dressing to eating – neither of which I can do without help. As an active and independent minded person these big limitations in my life over a really quite short period have presented emotional and spiritual challenges not to become ‘down’ in the mouth. My family, friends and church contacts have been life-savers – I don’t know how people coping on their own without these levels of support actually manage.
Is there anything you are grateful for?
So grateful to people and neighbours around us, to our church friends, to the MSA Team, To our Parkinson’s Group, and Exercise Groups. In particular Ian’s Best Man’s wife comes over from Huddersfield every Tuesday night – puts Val to bed, sleeps with her in the room, and looks after her all day Wednesday, doing all the cooking and care which gives Ian 24 hours respite a week. Absolutely life-saving. Also, we have so many friends helping us that Ian has never needed to use his respite care budget allocated to him by Lancashire County Council Social Care as everyone wants to help for love, and won’t accept anything!
Any other thoughts you wish to share?
It’s been a spiritual journey almost as much as a physical journey. As I am now starting year 6 since the first ‘Parkinson’s diagnosis’, it has kept me focused rather more on eternity than I might have otherwise been!
Disclaimer: The views and opinions expressed in the member 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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Dear Val,
It was so inspiring to read your story, & how your a living with MSA as well as dealing with the difficulties !!
I really admire how you focus on what you can still do, which is such a positive.
Thank you for sharing your story.
Best wishes Sharon X
Hi Val, I enjoyed reading your story of your MSA journey. Lovely to speak with both you and Ian at the Preston MSATRUST meetings. You are truly inspirational. Thank you to both you and Ian for the advice you offer to others who are at the meetings. See you both at the next meeting.
Best wishes, Cathy xx
Dear Val and Ian,
Thank you for sharing. The struggles are so very real, but we too (husband Andy who has MSA and I) have a very strong faith which helps us in the darkest times. None of us knows what’s ahead, but, like you both, we have so many loving friends and family, including our church family who continue to support us.
We are determined to live our best lives and raise awareness and it is stories such as yours that bring hope.
Much love
Loz & Andy J x