Forgive my simple post title.
My father was diagnosed with this horrible illness a while back after what seems to be the usual misdiagnosis of Parkinson's. How I wish it was Parkinson's he suffers (no disrespect meant to those who suffer or have relatives who suffer Parkinson's). I've joined here because other than my mum and dad, who live 30 miles away from me, there's nobody else who knows a thing about PSP. I feel constant frustration about it due to the fact it's almost as if people who know nothing of the illness assume I'm exaggerating. I'd just like to give a back story to mine and my father's (Keith) relationship and how it is affecting me.
I suppose the earliest relevant memory I have of my Dad is waking up at about 5am after a nightmare one morning, hearing him stirring and getting ready for work (my Dad, before his retirement, was a hard working man who never let anyone down when it came to looking after his family), I ran down to the kitchen and grabbed onto his leg, he made me some jam on toast and told me there was nothing to be afraid of and I'd be safe to go back to bed and sleep it off ready for waking up for school. That memory sticks with me because it sums up perfectly how he's always made me feel - safe and protected. That relationship I had as a young kid developed into a more "matey" relationship, I'd be walking home from my first proper job and walk past the local pub to see him in there waving me in and we'd have beers and a good laugh and joke together. This went on for years, I consider him my best friend and my hero and as long as I had him I felt untouchable.
This is where the story unfortunately takes a twist that neither me or my Dad expected. He gradually started to lose his balance and kept falling "Well, he is 65/66" I used to think, as I was either there helping him up or I was reading a text from my mum describing his latest tumble. I used to carry on taking him out for a drink or 2 and I was at that point concerned but thought maybe it's a phase that will pass. Then came the more serious falls and the eventual diagnosis. PSP? What's PSP? I still remember that first night I read up on it, I cried to myself as it described his decline and physical changes so perfectly.
So now here we are, 24 years on from my Dad making me feel safe and loved after that nightmare I had, going through an unimaginable nightmare with him suffering it. I take him out in his wheelchair and he's so sweet and vulnerable, like I was as that 9 year old child he reassured so well that morning. I feel lost, lonely and confused without him there to protect me.
If this strikes a chord with anyone, please get in touch as nobody I know seems to understand this terrible illness.
Thanks for reading