It’s been years since I’ve been here so thought I’d introduce myself as I think I was too shy when I started my journey 12 years ago and I’ve just had 2 weeks in St George’s having my diagnosis evaluated as some neuro said parkinsonism, others ‘it’s all in head’ and other dopa responsive dystonia. I was off my sinemet for 10 days and it was hell. Despite having on off periods I didn’t realise how much I need levodopa to function. Walking metres to the loo with my walker was a struggle. Luckliy they saw it too and back on it. It was debated whether it was YOPD or DRD (dopa responsive dystonia) but the dat scan decided and its DRD. My brain cells are there but they can’t produce dopamine so very similar symptoms and same treatment. As there is 1 in 2 million chance of having it it’s like being in no man’s land. Dystonia everywhere is a big issue but it’s the parkinsonism that are harder to deal with. I’ve had symptoms and progressively worse since my teens so should be used to it by now.
Writing especially during lockdown and beyond has become my lifeline and hoping to self publish one book next year but currently writing another with dream of being traditionally published. It’s had some interest from publishers when I’ve entered the beginning to competitions but need to finish it which is a challenge thanks to dodgy handwriting and brain.
So hi and hope despite having an anomoly diagnosis I can find a place here. Loneliness can be crushing at times.