Life with MSA – Nellie’s Story
What has changed most about your life since your loved one was diagnosed with MSA?
Since my mum was diagnosed with MSA 6 years ago, my life as a young 22-year-old changed from going out partying to fully support and care for my mum and disabled brother who she cared for. 6 years on and he is more independent now since her diagnosis. However, I manage all his admin alongside mum’s admin, appointments, and financials while working full-time training to be a teacher and a mum to a 3-year-old.
The adjustment I struggled with. We began to argue as she accepted things she could no longer do and I was adjusting to the new load of admin I would have to deal with. Now she is fully bedbound, incontinent, and uses a full-time catheter. She has a peg feeding tube and now has server reduced movements of her arms and can no longer talk fully, we can only pick up certain words and have to decode the sentences for her.
Had you heard of MSA beforehand?
I had never heard of MSA beforehand, when she got her diagnosis there was no information pack the doctor could give us so advised us to research by ourselves using the internet which was quite overwhelming.
How do you feel about the changes MSA has made to your life?
It changed my life completely. our family dynamics changed and are now our new normal. my 3-year-old has grown up and missed out on all the great things she could do with him before, his normal with his nan is to want to support giving her medication via her PEG. Things have been slightly easier on me since getting full-time carers and carers who sit in between calls with her as she is a choking hazard.
Was there a particular point when you started to identify as a ‘Carer’.
I never identified as a carer as she is my mother it is a role I knew would come as she cared for me all my life just came a lot sooner than we ever expected.
Has anything from the MSA Trust been helpful while caring for someone living with MSA
Seeing stories of people has helped me been able to identify new conditions she has started to develop such as Pisa syndrome which I never heard of before. Also, the MSA trust has allowed me to see the importance of fundraising for the cause and led me to carry out my fundraising.
What does the MSA Trust mean to you?
The MSA trust has been so informative, the nurses have been helpful with advise and best way to go around things I don’t fully understand myself. Being able to see how the community support one another has been a massive help.
What are the challenges you have faced?
Explaining the condition to every new doctor who doesn’t work in neurology before we can carry on with the appointment.
Balancing the appointments with work and having the time off (this has required me to reduce work days).
Answering the questions my 3 year old asks about his nan and why she is the way she is so he understands (he absorbs all information and will talk about it again days later)
Is there anything you are grateful for?
I am grateful for the information platform and knowing although so rare of a condition it’s nice to see that others do suffer, you can feel you are the only ones suffering as we don’t know anyone else with the condition. This feeling can be overwhelming and stressful.
Any other thoughts you wish to share?
I thought it would be nice to maybe try and think of something we can arrange for carers (family members) to get together meet up and talk together, cry together, and share stories without our loved ones being present to be able to grieve for the person we have lost (although still there they are not the person we once knew) to be able to release stressful feelings as we need to be strong for them. I Struggle to talk and release these feelings as no one understands what I am going through.
The MSA Trust runs a Carer’s Group online once a month. If you would like more information contact support@msatrtust.org.uk
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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You sound like the most loving daughter, she obviously done a fabulous job raising you. Thank you fir sharing your story from a daughter/ carer’s perspective
Thank you Angela. x
We are all so very proud of you, we’re here for you always, love you ❤️