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.
