Caring for My Mum – Millie’s Story
When I was 18, my mum was diagnosed with Parkinson’s disease at the age of 49. I thought it was the worst thing that could happen; my entire life turned upside down. I spent hours researching the disease, getting involved in events, raising money, and raising awareness, trying to do everything I could to help my mum live a normal life.
Mum was still very active. She retired early and was able to spend quality time with us while trying to figure out what her future would look like. I didn’t notice much change in her condition until a few years after the diagnosis, though perhaps I was ignoring the signs. She began to fall more frequently, which didn’t seem worrisome at first since she always laughed it off. Her head would start bobbing, and she often complained of neck pain.
Because Mum was so young, she was offered the opportunity to trial a new drug administered through a pump. This drug is now available through the NHS for Parkinson’s patients, thanks to Mum and others who participated in the trials. The pump was life-changing; her head stopped bobbing, her high and low moments decreased, and she felt more like herself. Her falls reduced from around 20 a day to just one or two.
Sadly, it only takes one fall to cause serious damage.
In December 2021, I signed up for a charity hike in Iceland to raise awareness and make a difference. I established Hike 4 Happiness, where we organise events to raise money for charity while bringing people together. Since then, we have grown significantly, supporting others facing similar challenges, and we have raised over £10,000 for charity. We’ve even been featured on Radio Devon and in local newspapers. Throughout this journey, I’ve pushed my own limits and created a platform I’m truly proud of. Hike 4 Happiness has helped me navigate the difficult years that followed.
In mid-December 2021, Mum was admitted to the hospital with sepsis. We were desperate for her to come home for Christmas, which she did just a few days before. Looking back, she probably shouldn’t have, as she was rushed back with sepsis again in early January, which led to an operation later that month.
The hospital discharged Mum with a diagnosis of epilepsy, but none of us felt right about it. My two younger siblings and I took turns staying by Mum’s side, caring for her day and night. A few days later, she had another seizure, which forced her to stay in the hospital for an extended period. While there, she contracted COVID-19 and was moved to the COVID ward, as doctors continued investigating her seizures.
One weekend while I was at work, I received multiple missed calls from my boyfriend and siblings, urging me to get to Derriford, our local hospital, immediately. An hour later, I was on the COVID ward, sweating in PPE, being told to say goodbye to Mum. We managed to get her transferred to Intensive Care, where they stabilized her, but those few hours of saying goodbye were devastating.
After multiple tests and scans, doctors concluded that Mum had a bleed on the brain, which caused the seizures and her rapid decline. After a month, she was transferred to a local rehab facility for intensive physiotherapy, speech and language therapy, nursing care, and occupational therapy. By December 2021, she had returned to her baseline, and we were grateful to have her back.
Mum came home in May 2022 after nearly six months in the hospital. We became her full-time caregivers. Since I was self-employed, I was able to spend more time at home. I moved out of my art studio and began working from my bedroom.
However, over the next year, relationships started to break down, my mum’s condition deteriorated again, and life at home became increasingly difficult. In October 2023, Mum was readmitted to the hospital, and we knew she wouldn’t be coming home. My two siblings and I moved to Plymouth to be closer to her.
As I write this, it has been a year since we were told Mum didn’t have Parkinson’s. In October 2023, I sat in a small, hot hospital room with her as the doctor told us that she did not have Parkinson’s; instead, she was diagnosed with Multiple System Atrophy (MSA). They suspected she had only two years left. The hardest part was having to break the news to my younger siblings, George and Poppy. It broke me to see how much it hurt them. None of us have fully accepted it, but we live with the hope that Mum will keep fighting.
My mum is my best friend. She has always been the first person I turn to for anything, good or bad. She’s supported my career choices, reasoned with me, taken me to therapy, and been with me at every market. Many of these things aren’t possible now, and I feel like I’m doing life alone as she slowly deteriorates and becomes more absent in my life. But she remains the reason I do what I do. I’m so grateful I still get to laugh with her, cry with her, and support her in any way I can.
Mum is currently in a nursing home, where the staff have adapted to her ongoing changing needs and keep us closely involved in her care plan.
Every donation to the MSA Trust helps fund the MSA specialist nurse who is heavily involved in Mum’s day-to-day life, provides voice banking equipment for patients when they lose their voices, supports newly diagnosed patients and their families, funds NHS clinics, and—most importantly—supports research for a cure.
In November 2025, I will be running the Three 8s: 8 miles, 8 days, 8 cities. I will run 8 miles each day for 8 days across 8 cities. I hope some of you will join me for parts of this challenge to raise awareness for MSA.
Why 8? Because it will be 8 years since my mum’s initial diagnosis and 8 years since our lives changed. I wanted to dedicate this challenge to her.
I’m not sure if I can do it; I don’t know if my body will hold up. But I have to try. We need to raise awareness for MSA.
We hope to have a small group join us for this challenge. If you’re interested, please reach out—we’d love to have you with us.
There’s a long, emotional road ahead, but my mum is a fighter and has beaten the odds more than once.
This is all for my beautiful, caring mum, Philippa.
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.
Recent Member Stories
Life with MSA – Christina’s Story
3 Dec 2024 | 0 comments
Living With MSA – Karen’s Story
24 Oct 2024 | 0 comments
Living with MSA – Liz’s Story
17 Oct 2024 | 0 comments
Hey Millie, what a beautiful story of love, support and dedication. I 100% relate to this as my mam passed away 3 yrs ago due to MSA. What cities are you running? Sending love x
Dear Millie , you George and Pops have done such a fantastic job with your mum, you are such a credit to her.
What a beautiful and deeply moving story. As one of the carers here, I am committed to giving her my very best every day. She’s such a beautiful person inside and out, and her smile lights up the room.