Jeanette Quinn’s mum was diagnosed with PSP in 2006. Throughout her mum’s PSP journey, the family were surprised how few healthcare professionals were aware of the condition. Here Jeanette shares details of her mum’s PSP and why she has pledged PSPA a gift in her Will.
“My mum was still a vivacious, young at heart woman when she passed away at 76-years-old.
She suffered with severe hip pain from birth until 1972 when she had a double replacement. Our sister Dolores has a learning disability and her husband, our father, died at a young age. Mum dealt with all these things with stoicism, courage and always found the joy in life, and that’s exactly how she tackled PSP, when the diagnosis came.
I have two sisters, and the four of us were extremely close. Mum called us ‘her girls’ and my younger sister and I spoke to her on the phone three or four times a day. Really, she was my best friend. We’d talk about all sorts, especially about who was going to get through to the next round of Master Chef.
When mum began to fall, we thought it was a result of the double hip replacement she’d had and that they had finally worn out. But as time went on a few elements of her personality changed too. I can remember when she tried to pop a spot my nephew had on his chin at the dinner table when we out having a meal, and was extremely intent on ensuring it did pop. Mum was a stickler for good manners, so she would not normally do things like this at the dinner table, so I knew something wasn’t right.
After GP investigations went around in circles, I took mum to the specialist hospital for her neurology appointment, so I was there when she received the news. Mum was a little confused, but I heard what the doctor said, and knew what it meant.
The doctor felt he had to repeat it for mum. ‘You understand what this means? There is no recovery for this.’ It was definitely a shock, but it was something I needed to hear.
None of our family had heard of PSP before mum’s diagnosis. And we probably still wouldn’t have, if mum hadn’t been diagnosed with the condition.
Mum lived in Wales with her second husband Eric, and at the time she was ill I was living in Warrington, so I wasn’t too far away. I tried to see her as much as I could and continued to ring her regularly too.
That was one of the saddest things, when the PSP progressed, that our phone calls began to get less and less. I could hear mum struggling to get her words out. But despite her losing her voice, and seeing her deteriorate, she still kept that same big, beautiful smile until the end.
Our Mum reached the end of her journey in 2012. The hospital team were fantastic and let me stay with Mum for the 19 days she was cared for by them. Before she entered an unconscious state, that grit and determination was still there, and also that beautiful smile. We could see in her eyes, she didn’t want to leave her girls. It was heart breaking.
Throughout this time, I felt really helpless. Once we had lost mum, I wanted to host an event of some kind, to raise awareness and funds for PSPA too, to feel like I was doing something to help. But there was so much to do still. And that’s when I thought about my Will. I needed to update it anyway, once my sister Dolores started living with me, and so that’s when I made the decision.
Throughout mum’s journey, it really hit hard, that very few healthcare professionals had heard of PSP. So, leaving a gift in my Will, well it was an easy way to help with that problem. To help raise awareness, ensure support of people living with the condition continues, and aid research, all in mum’s name.
Even though mum is gone now, she still gives us a lot of joy, as we relive so many wonderful memories. I know my mum would have supported my decision to leave PSPA a gift in my Will and aid awareness raising. It’s her legacy, as is the continuation of phone calls with each other. Her girls still chatting away with each other every day.”