There is a new pd campaign in the uk and it features some people i consider to be contemporaries ie we were all dx roughly the same time and we have advanced thru the hinterlands of this disease together.and so i reflect…we are in senior school now. No longer the learners we are the main guard now. The experienced. The ones who show the newer recruits the ropes and have been around long enough to be critical oof the system and openly rebellious.
And there is a lot to rebel against.
Why do we pay for our prescriptions?why does diagnosis take so long…this is a common disease, its not rocket science. Why no support at diagnosis? I still hear that folk are told in a dismissive way, oh it s PD, you won’t die of it, see you in 6 months. No joined up education, care, links between consultant, nurse and GP, no common programme of treatment even though its proved that early intervention with diet and exercise regimes can slow the disease right down. Why no new drugs? Why inconsistency in available treatments. Why simple mistakes in drug interaction in hospital? Why no CARE that so many are effectively trapped by this cruel, shocking and terrible disease.
My consultant took one look at me, referred to him for a suspected carpal tunnel diagnosis confirmation, and said I think its Parkinsons. I was 38. He then told me he saw no reason why I couldn’t continue with my career for the next 20 years. That was imho a blatant lie. Designed to soothe and get me out of the room in time for the next appointment. 13 years in and the enormity o f this misleading advice is still sinking in. Its just wrong.
So while I don’t want to be in senior school I’m going hell for leather for the rebel role. I’ve got nothing to lose. The parkinsons is taking it all any way.
To that end, i have written a poetry book an d you can buy it here…its small but its a start. It costs GBP4 and half the profits go to Parkinsons UK. It’s my view of Parkinsons. See if you agree.