Living with MSA – Angela’s Story
What has changed most about your life since being diagnosed with MSA?
What has changed most since my diagnosis in my life?
This is an easy one, the life before diagnosis is no longer ‘my’ life. It’s not all in a negative way but it is a different life. On the grateful side, I have more time with family and friends for that, I am truly grateful. I don’t have the Monday morning blues. Those blues do come and go but they now come and go for other reasons.
I miss who I was, my identity within work, with family, with friends. I’m still in the process of creating and accepting my new identity.
Being diagnosed with MSA, the process and how it made you feel. Had you heard of MSA beforehand?
I was diagnosed on the 28th March 2023. I had been seeing a neurologist (not through Covid, which I completely understand) for a few years before. I suffered severe constipation for years previously, had some increasing tremors, some falls. I put everything I was experiencing down to menopause.
November 2022, my consultant first mentioned MSA. I had never heard of it. After further tests my MSA was confirmed in March. This was our ‘before and after day’.
We were numb, I felt my wife’s fear and I was consumed by how do I tell my kids, my mum?
My wife, my whole family and friends are my world. My strength comes from them and my strength (hopefully) helps them cope.
How you feel about the changes in your life?
I’ve thought about how I feel about the changes in my life and if I’m being honest the answer is sometimes I’m angry, sometimes frustrated (when I can’t do a simple task), sometimes I’m envious of others just walking down the street. Sometimes I’m sad when my favourite song is playing and I can’t just get up and boogie. Or when I’m at a Café and I can’t eat the fry up. Or when I’m so fatigued I have to listen to my body and stay in bed. Or when I see the pain and fear in the people I loves face’s.
Has anything from the MSA Trust been helpful on your MSA Journey?
The MSA Trust was my first port of contact following my diagnosis. My MSA nurse Katie Rigg has been my lifeline.
A diagnosis of MSA is frightening for the whole family. It’s a diagnosis most people can’t explain initially. The MSA factsheets have helped us understand MSA and continues to help us prepare as each new MSA gift (symptom) rears it’s ugly head. Katie has signposted us to other professionals, helped chase up appointments and been there to help with any query we might have, for that we are truly grateful.
The MSA Trust has also funded me to download and store my voice via SpeakUnique for when I struggle to communicate with my voice. Thank you MSA trust.
What does the MSA Trust mean to you?
My nurse Katie Rigg from the MSA Trust has been a person we can reach out to for any reason. When initially diagnosed with MSA there are a number of professionals you will see (Urologists, Gastrologist, Respiratory to name a few) to have that one consistent link to MSA, Katie, has given us peace of mind and helped in so many ways.
Knowing I will have a way to communicate means I can still be present in the room and reassures me that even without my voice I will be able to communicate my needs. Without the MSA Trust and that link person and useful information we would be fumbling in a sea of medical appointments.
What are the challenges you have faced?
We faced the challenge of the rollercoaster of emotions. The challenge of adapting to life on wheels. My biggest challenge is acceptance. Accepting that there are changes and I have another hurdle to jump. Accepting that there are things I simply can’t do and accepting that help when offered.
Is there anything you are grateful for?
I am immensely grateful for my wife, my family, my friends. I count myself very lucky to have found a soulmate and to have my family around me. I know that sounds soppy but I truly do not know how anyone does this without a support network. For them I am 100% sure that their support will come via the MSA Trust team
Any other thoughts you wish to share?
My fear with MSA is not about dying it’s the cruel way my loved ones have to watch that journey.
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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This is our wonderful daughter in law. Strong, brave, caring & patient. She has dealt with blow after blow, with grace & fortitude. Making the most of all the good times, & creating memories for the time when that will be all we have left.
More publicity & funding for MSA, for research, & practical help, would be wonderful. So many people have never even heard of it, or undrstand it’s devastating effects.
The help provided by the MSA Trust has been invaluable, & is so desperately needed by all sufferers & their families.
Thank you.
,
Lov you so much and thank you for EVERYTHING you do for us xxx
Angela you are the strongest person I know ❤️ you still give strength and inspiration to others even on your darkest days. your story and the other people suffering this horrible condition makes me humble and a great reminder that life is for living and to embrace all the things that are important to you like family and friends, all the materialistic things are unimportant. your drive and determination to live your best life even during the most challenging times is remarkable. You also know it’s ok to say your not having a good day and stay kind to your… Read more »
To my big cuz, a fellow warrior with a different condition. We smile, we carry on cause we have too. I don’t feel brave or inspirational, I’m just me. Us Lynch gals are tough though!. Lov you and Keith so much x
My dear Mum. Watching you go through this struggle is the most difficult and frustrating time. Your pain, worry and fear is unimaginable. The anger that I’m sure we all feel because we cannot take this horrendous condition away from you consumes us all and we have all had to learn new ways to cope with that. But I keep telling myself – if this is how we feel, imagine what must be going through mum’s mind.. 24 hours a day 7 days a week. Every moment over thought, every memory cherished that bit more. We have spoke about so… Read more »
To my boy, “I am me” although at times, in no way do I feel me. Inside I am. You remind of that every day, you keep me focused and grounded. I’m so sorry you have to watch the external me crumble but thank you for always treating me as simply me, no matter what.
I’m proud of you. Love you, together as a family we will all get through this. Xx
Angela you give so much strength that others can’t help but be strong for you, susan and I love you to pieces and are so glad we were able to host the picnic in may to raise awareness for msa, stay strong sis and ember, catch up soon for hugs and you will always be you xxx
Hey bro, thank you both for being you guys and supporting not only us but the MSA community through your fundraising and raising awareness. We are lucky to have you both in our lives xxx
Angela, watching what this condition has stole from you so quickly has been truly heartbreaking and angering, why you, why us? You say you are not strong but you are a the strongest person I know before MSA and after diagnosis. Your positivity shines through all the rollercoaster up n and downs we go through together. That is you!! That’s one of the many reasons I fell in love with you because you are you, the amazing strong, beautiful, positive, kind, funny and truly amazing person you are. I am truly blessed to have you in my life and for… Read more »
My angel, my strength. I will always love you. No other words are needed xxx
Reading your story from 12,000 miles away, doors down from your sister in law I find myself sat here crying at how unfair life can be and how the most beautiful kind humans seem to be touched with such devastation. Your story is written with such poise and dignity despite the pain and struggles you endure. THANK YOU for sharing your journey. Awareness is everything. I’m sorry such a lovely family is faced with such sadness. I’m thankful that you have such wonderful support and services to help guide you. I wish to send love and strength across the miles… Read more »
Thank you Kelly, what beautiful kind words. Thank you so very much. Sending love to you and your family x
Angela, you are a true leader! You have inspired so many children, families and practitioners in your career and left a huge legacy in social work. I’m still raging I don’t get to come to work every day and be led by you, but you are always in my thoughts for case work and I can’t thank you enough for how much you have taught me and continue to teach me. You are AWESOME!✨️
You too are awesome karen, keep smiling, keep team building and never give up on fighting for the rights of families. I am no longer the leader, YOU are Karen. Carry on our work. Sending hugs and thank you.
Im so proud of you Angela. You are going through so much and you still have time to help others by telling your story , You fight. On for your family ,always smiling and thinking of them in all you push to do. You look radient in all your photos ,no one looking at them outside family would realise how hard it is for you. You are one amazing beautiful woman. Keep fighting love you.
Lov you too auntie teedee, always. Thank you for taking the time to comment. We are tough woman xx
Angela you have always been someone I have looked up to and wanted to emulate both professionally and personally. You have always been brave before this, in the decisions you made at work and in your personal life and these were always made for the right reasons. I’m so lucky I met you through work and so proud to call you my friend xxx
Hey lovely. Your words are so very kind. I know I was a scary person at times (when we first crossed paths) but it was always my passion to get it right.
You too are going through battles no one should have to and you do this with a smile, with bravery and with fight. Kindred spirit.
What a story and reading the comments makes it clear to me what an awesome human you are ❤️ you are my little sister and tbh not sure what to say so for now just want to say love you ❤️and of course Ember – my sisters ❤️
We love you too x
Dear Angela
You are an inspiration. Working alongside you was a pleasure, listening to the gentle way you spoke to and guided families was an education to everyone around you. When I learned you were unwell I felt numb for you, I’d never heard of MSA before. You are dealing with this with determination and dignity. I know you’re wonderful family give you strength and together you are creating fantastic memories.
With love always
Claire x