be aware

It’s PSP awareness week. The long term reader will have noticed me mention Progressive Supranuclear Palsy before: it’s what my mum had; it’s why I was at the Houses of Parliament recently; it’s why I’m interested in rare disease. PSP shaped my mother’s life; it’s shaping mine too.

Herself was in her early sixties when she took to falling. She had double vision too, but that didn’t seem to be why she was falling- she wasn’t tripping, just ending up in a heap on the ground. Her mood wasn’t great, and her confidence dipped. She stopped driving and dancing and playing bowls and playing golf and doing yoga. She went to the doctor every few weeks, but never quite gathered herself to tell him about the falling. We began to wonder about her speech…

I went with her to the doctor. A scan, MRI, consultant appointments followed. Eventually we ended up with a neurologist, and were innocent enough to still expect a diagnosis and a tablet. Later still, we had a diagnosis, but no clue.

If I read the internet right, my mum would end up in a wheelchair- maybe bed bound?- have difficulty with speech and swallow and communication and vision and continence and, and… No. That couldn’t be right. Ok, she wasn’t quite herself, but surely a dynamic, vibrant woman wouldn’t just fall apart and be bed bound and unable to communicate without  something dreadful happening? But the dreadful thing was already happening, inside her brain. There was nothing anybody to could do to stop it, or slow it down. We just had to work out how to live with it, how to ease things, how to hold her hand and be with her through this.

Ma, balancing

Four years after the diagnosis, my mum died. She was indeed bed bound and hardly able to communicate, but in her last days we got gifts of a hug, a smile, a shaken head, a thumbs up. She was still there, still making her opinions felt, still wowing us with the force of her will. She’d spent 2 years in a nursing home, challenging systems, causing havoc by falling out of bed and refusing to press the buzzer, singing while she could, continuing to be indignant at living with the old people, continuing to believe that she should be at home looking after Handsome Husband, who’d been diagnosed with Alzheimer’s.

PSP always wins, because once the progression starts, it keeps on going. Sometimes there’ll be a big change, sometimes little bits, but the dreadful thing keeps on going.

My mum had to deal with the many, overwhelming aspects of living with, and dying from PSP. I have one challenge this awareness week.

I dug out the ancient, hardly worn, trainers and swapped a lace. I’m wearing #EdsLace all week. I will not be stylish, but that’s no change.

we are very active
we are very active


#EdsLace is one of those simple, clever ideas. The coloured lace can be bought from PSP Association. It can be worn as a shoe lace, a hair band, bracelet, anything at all. The key thing is that the end is cut off. The lace will fray. Sometimes there’ll be a big change, sometimes little bits, but the lace will keep on fraying. We can’t stop it or put it back together. The lace progressively falls apart, representing the impact of the dreadful thing on those who live with PSP.

So if you see an oddly laced person this week, chat to them. They will have a story to tell.




3 thoughts on “be aware

  1. Fiona, thank you for writing so clearly about this disease and the effect it had on your Mum and Yourself. I’ve read your posts in the past about your Mum’s illness, but, and this is my fault, I wasn’t sure exactly what the illness was. I wasn’t aware of Progressive Supranuclear Palsy. I may have read about it, but not taken it in. This time I have.
    And you’re very stylish, if I may say so. Even with odd laces!

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