Living With MSA – Karen’s Story

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

My independence: From the very early stages of my symptoms, I quickly felt uncomfortable to do things alone. My life was greatly affected by having my driver’s license revoked especially due to living in a remote area. I feel I have lost a-lot of my freedom and spontaneity I once had.

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

No, I had never heard of MSA beforehand. For myself, it was a very long process of hospital visits, tests, and scans over the course of 3 years. It was actually my elder daughter who had researched MSA and suggested it as a possibility. And through later scans, my final diagnosis being MSA was made on the 24th of June 2024

How you feel about the changes in your life?

I feel frustrated about the changes in my life, my symptoms started in a point of my life where all my children had grown up and left the nest therefore friends and I had so many plans and adventures we wanted to do. However, you can waste a lot of energy, that I haven’t got, being negative and you can only play with the cards you are dealt.

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

Knowing I am not alone and being supported by others who understand and empathise with the diagnosis is a huge comfort.

What does the MSA Trust mean to you?

The MSA Trust is a safe place, being a great point of contact for support and information. I can feel understood and recognised in my diagnosis.

What are the challenges you have faced?

Physically and mentally I have faced challenges of accepting my body to not work as it did before, living life always on the go and outdoors, this has been a major change to my life. A hard challenge over the years leading up to my diagnosis and now has been the change in my mobility. From being able to walk freely prior to now being reliant on carers, a wheelchair, and other aids for daily living hasn’t been an easy journey. From bumps to bruises and even an electric wheelchair through the wall…

Communicating has also been a real challenge, over the years I have slowly lost the ability to write, my speech is slurred and often stuttered. The tremor in my hand also makes texting difficult however for an interesting read for the recipient.

Is there anything you are grateful for?

I am extremely grateful for my family, friends, and my careers who have become like extended family. All these people ensure I still have adventures, laughs, love and support.

Any other thoughts you wish to share?

I would like to spread the phrase “Use it, Before You Lose it.” Such aggressive illnesses can affect anyone, despite living the ideal “healthy” lifestyle. Our health should never be taken for granted, and each day is a blessing.

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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