Keith has Progressive Supranuclear Palsy. It was wonderful to finally meet him and Sheelagh in London a few weeks ago. This is their story.
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.
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.
#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.
The English Houses of Parliament are fascinating historical institutions.
I’m inclined to rant and rave about how they actually work, although opinions on the upper house have been overtaken by the horror of Dave and his mates. A general election looms, so be warned, bloggy buddies. Outrage may drag my brain from the foggy depths to
complain comment here in an articulate fashion.
The Conservative party did not win the last election. They have had no mandate for demonising the sick as ‘scroungers’ or privatising parts of the National Health Service. They have simply ignored all protest, while lying, cheating and manipulating their way to bigger bank accounts. Perhaps it was always thus. Those in power look after themselves.
The House of Lords is where those with hereditary privilege or granted ‘honour’ review legislation and hold the works of the lower house to account. Or something.
As a white, educated, European I recognise my own privilege in the world, but that of the ruling class is of a different character altogether. Champagne, anyone?
Woolly jumper, lefty, pinko, naïve ?? All of those things. Also, curious.
Oh yes, I’m off to parliament on Tuesday.
How could I resist? I know folk who have turned down invitations to royal events because they do not support the status quo. I am less principled, or simply more nosey. I’m not going to be invited to a garden party, or get an honour. I’m taking my chance to look round me when I get it.
The PSP Association are having an awareness raising reception in parliament, and Ditzy and I are going on a day trip. There will be many emotions: “Look what you made me do, Ma”, “Pops, how did I end up here- are you watching”, “Can I lie down yet?”, “This is where they have their tea?”, and much exhaustion.
I’m so excited, I just can’t hide it. (Ditzy and I may be wearing these outfits.)
I’ve done more in the last two days that in the previous 2 weeks. I never quite get the hang of the ‘pacing’ thing. Pacing is all about being sensible, conserving energy, never doing too much, avoiding ‘boom & bust’. It’s really hard to do. After weeks of being fit for nothing (remember the not being able to sit up time) I was able to do things. Hurrah!
There was a major clear out of Girl2’s bedroom. Apparently nearly 12 year olds going to secondary school don’t need a cupboard full of Build a Bears and random dolls. Or the picture books her mother just couldn’t get rid of years ago. I was able to cart bags of things to the garage for the charity shop, and fill the wheelie bin with rubbish, but Spurs Fan had to lift the rest into the roof space. By the time I was done I could hardly lift my arms to the washing line. Then, too late, I rested.
Yesterday Ditzy and I got dressed up, had lunch out and collected a charity donation for the PSP Association. Thank you, fundraising engineers. I completed the current module for my Stanford on line course, Patient Engagement Design, and complained a bit. The course isn’t quite what I thought it would be- more about designing technology to
make money out of engage patients than designing effective patient engagement- but I’ll give it another week or two before having a full on rant.
Then, (yes, there’s more!) we went out. Spurs Fan and I, alone and unaccompanied. We were early, because the early oldie with a stick gets a seat. We went to see First Aid Kit in concert, and they were fabulous.
Swedish sisters with wonderful voices and sensible shoes. One with a frock and fringe, the other with endless limbs and shiny shiny Abba type trousers. We expected harmonies and loveliness, we also got hard rocking, Jack White type badass (but sort of sweet) moments.
I’ve been listening to their albums for a while, singing along in the car, or while doing other things. Last night I heard lyrics I hadn’t noticed before, and “I’d rather be broken than empty” worked for me. I’d rather recover than never try. I’d rather be frustrated than uninterested. I’d rather need to sleep than be bored stupid. I try not to be silly about it, or push myself beyond all limits, but I’m not going to lie back and watch daytime TV if I can avoid it. Sometimes that’s what I need and I retreat from the world, but I hate missing the chance to sing along. “Sing with me” they say. And so I do.
Today and tomorrow? Bed.