Living with MSA – Lindsey’s Story

What has changed most about your life since being diagnosed with MSA?

The biggest changes in my life are having to leave work as the role I had was very stressful and made my symptoms worse.

Also since being diagnosed I am more fearful of what the future will bring. I have a husband and son who I don’t want the leave due to an early death.

Being diagnosed with MSA, the process and how it made you feel. Had you heard of MSA beforehand?

I had never heard of MSA until my consultant mentioned it. I still don’t fully understand it and probably still in denial as it is so scary.

How you feel about the changes in your life?

I feel very angry about how my life is changing. It’s like bereavement with so many emotions going around constantly in my head.

Has anything from the MSA Trust been helpful on your MSA Journey?

I have found MSA and the factsheets a godsend. I find the Trust to be so informative and supportive. My Nurse Specialist Katie Rigg is very supportive and I would be lost without her.

The support group is so helpful. Having someone there who I and my son and husband can talk to and turn to is so important.

What does the MSA Trust mean to you?

The MSA Trust means so much to me as I can turn to the Trust for information and support 24/7, as sometimes I need to check something late at night or download information.

What are the challenges you have faced?

The challenges I have faced is knowing my life is much shorter than it should be, so emotionally that has had a massive impact. Physically I can no longer do what I loved doing such as climbing hills and cycling miles. I am having to learn my limitations and adapt which I find very frustrating and very hard to do.

Is there anything you are grateful for?

I am grateful for my husband and son being by my side.

Any other thoughts you wish to share?

MSA Trust is underfunded because people don’t understand and/or know about the disease. The Trust needs more charitable donations to enable more work in research as well as educating the public about the disease. People with MSA rely on the Trust for information as well as access to the Nurse’s. Without the Trust I personally would feel very lost and alone as even my GP didn’t understand what the disease is and had to contact Katie Rigg for advice so we need to highlight the importance of supporting MSA to enable the Trust to continue its fantastic work.

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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Gillian Kennedy

8 months ago

A heartfelt story Lindsey and I totally agree with you about the specialist nurses and support staff. My partner has MSA now for twelve years and without the advice and support from the Trust I don’t think he would still be with us.

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