Parkinsons “on” and “off”

I have a meeting with my neurologist later today where I’m hoping a change in my meds will deal with some of my speech issues and other related symptoms when I’m “off”.
With that in mind, and having had lots of messages asking about my symptoms and progression I thought, on this rainy day that I’d do an “off the cuff” explanation of what it means to be “on” or “off”. It’s often not so obvious in the early stages but this phenomenon of the disease become more apparent as time goes on.
With 40 or so symptoms (we don’t all have the same or all of them at once) I can’t cover it all but I hope this goes some way to giving an overview. There’s much better content out there but this is my take this morning.
I’m putting this stuff out there because I want to raise awareness. I also want to challenge stigmas. Please share, feel free to ask a question and help me and the many other amazing advocates out there to bring clarity and awareness. Thank you! #disability #stigma #parkinsons #onoff #youngonsetparkinsons #earlyonsetparkinsons #spotlightyopd #puk #cureparkinsons #cue1

[@richardstreet7518]

Another helpful vlog thanks buddy

[@GraceKeyz]

Thanks for the info

[@janemichallat]

Hello Carl .Thank you for sharing. You seem like such a lovely man. I don’t detect an accent, are you from the West Country by any chance? Do you see the Neurologist at Southmead ? I was diagnosed in Nov 2017. The only PD meds that I have. been scripted for is One Sinemet 12.5mg Daily. I take them as and when I can be bothered as they make absolutely no difference at all. As painful as the visible symptoms are, it’s.the internal ones that frighten me the most. I digress slightly. My biggest fear is the world that my Grandchildren will inherit. You see I have lots of. time, time to watch the news all night long and I can see all to clearly where we are heading and it terrifies me . If you would be so kind and list your meds I would be a great help. Ps The Neurology Team based at Southmead Hospital made a series of films designed to improve the lives of PD patients. I found it disturbing and brutal. I remember thinking this must be a life changing frightening disease if these chosen patients have willingly entered into this. It wasn’t a resounding success either. I will try and find it for you.