Cuckooo… Hello… It’s me, hear me!! (Or just wait.. give me time to explain..)
Having already had run-ins with two uncooperative services who are there to help — via a telephone call this morning — I wish never to talk on a ‘landline’ again — video call is better for me because my voice alone (without seeing me) is solely motionless or speedy, slurry or too much… on a telephone.
The people I needed to speak to were clearly disinterested and I can assume or judge (I really couldn’t care one bit either way — duck and back come to mind at his moment… :)
I am shattered just preparing my scribbled prep notes for every call I need to make as a 40 year old adult, as much as I am left feeling sad about me, my future health and what I will be like next year and the next. Alive, yes.. but able.. nah.
It came as I saw only this morning a video posted earlier this week by a good, decent man called Brian who, like me is in his 40–50s and has had Parkinson’s a loooong time — over a decade.
As my friend Brian C Toronyi put’s it: parkinsons is a fight, we the community, fight everyday and night (yeah I know what time it is..)- but the biggest fight’s( won or lost) are bloody- that’s a fact and it (Parkinson’s) directly or indirectly take’s away leaders of our battles with the invisible enemy we cannot see every single year — weather it be by circumstance, direct cause or consequence — we are losing friends who lead the way toward bettering the treatment of PD or more directly (or both) just by putting themselves out there to speak up about the misery that is #parkinsons DISEASE. It knocks your confidence to keep going, even the ones I thought were stronger than me , leaders like Brian x he’s a tall , strong and able man yet Parkinson’s has recently bloodied his nose but he’s up again to fight again and I, like you , need people like Brian — you don’t inspire me , that’s the talkers … Brian, you shout down my ear every morning and scare the shit out of me — because that’s what big brothers do and I’m grateful to have you man.
Brothers and sisters unite, this is war.. no more sensitivities to worry about. I am going to tell it like is from herein — I owe it to Brian… and the next Brian… and the next etc etc until we have better treatments or that illusive cure or are offered better representation as people LIVING with Parkinson’s because sitting in silence waiting for the world to catch on, catch up and knock at my door — is unproductive, a drain on my time and my lasting energies..
DS X
