Living with MSA – Gill’s story

I was diagnosed with MSA 2½ years ago. Because diagnosing MSA requires some sleuth-like medical work, like many others I started the journey as a Parkinson’s patient.

I feel very strongly that we should do what we can to help develop our knowledge of MSA to help future sufferers. For this reason and after discussion with my family, I have left my brain to the Brain Bank after I die. It turns out to be the most interesting thing about me – for all the wrong reasons!

I don’t suppose that I would have sought medical help until much later on in the development of this disease, had it not been for me breaking my jaw twice in 5 years by face-planting the pavement.

Where I saw a shuffling walk, shakiness and tiredness as signs of getting old, a very astute hospital consultant saw them as symptoms of an underlying neurological problem. How right he was! Telling my partner and particularly my two (adult) children was much harder than hearing the diagnosis myself.

I have been lucky to have been offered terrific support by the MSA Trust and local services including OTs, our neuro-rehabilitation centre and the Marie Curie hospice. I have brilliant care from the National Hospital for Neurology and Neurosurgery and, most valuable of all, I have unwavering love and care offered by family and friends.

In the early days it was easy to concentrate on practicalities and avoid thinking about the future. Now, although I fight like mad to hold back the tide with a tool kit consisting mainly of neuro-physio and voice exercises, the inexorable progression of symptoms is obvious. I am acutely aware of the ever-increasing burden that falls upon my partner.

Being told that I had MSA early on in the disease meant that I could make informed choices about decisions like when to retire and gave me the opportunity to reflect on what a great life, packed full of love and laughter, I have enjoyed. Yes, I would like more – many, many years more – but, if I cannot have that, then I will value every moment that I do have.

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.

Subscribe

Notify of

new follow-up comments new replies to my comments

Label

{} [+]

Name*

Email*

WebSite URL

Label

{} [+]

Name*

Email*

WebSite URL

0 Comments

Oldest

Newest Most Voted

Inline Feedbacks

View all comments