QUESTIONS/ANSWERS via Social Media – May 2015
Question:
Great news!! I don’t understand the new diagnosis – does this mean that you had a small dopamine hiccup – and that the rest has been because of the meds for that hiccup??
My Answer:
Kinda sorta – and the continued drug “barrage” may have changed the brain function as a consequence ie altered what the brain considers normal. I’ll probably write about it more fully.. just wanted to get the removal of “inevitable dire consequences” out there!
Question:
I’m very happy for you, of course – but does this mean you were incorrectly diagnosed and given the wrong medication for all these years?
Answer:
Neurology is far from an exact science so the fair answer to your question is “no” 🙂 Everyone involved with my care has always done their best, I believe, and I am immensely lucky, unlike huge numbers of people with neurological conditions in the UK and overseas not only to have a Neuro who is prepared to say “let’s think again” but also to see a Neuro who is both a Movement Disorder Specialist and has Parkinson’s as his prime interest. Most people in the UK diagnosed with PD are diagnosed by their GPs and few ever have a brain scan. The folks at Parkinson’s UK, The Cure Parkinson’s Trust and on forums world wide will say the same. I am amazingly lucky. My symptoms may never go away, the pathway to what occurred in 2006 is also complex and I have other old injuries/issues adding to the current mix. I’ll maybe write it all up at some point. BUT today I just want to celebrate the news I got from my neuro late yesterday
Question:
Great news – now you’ll need your positive approach to go through all the withdrawals
Answer:
Thank you for your good wishes!! As a practical matter, the process of weaning off parkinson’s drugs might be “interesting” (i.e., blooming scary) as there are many potential problems in the process, not least of which is a diminishing of functionality as, right now, despite the dopamine system looking healthy (ie not diseased) no-one knows if/how/how well it will start producing its own dopamine as it could have become “lazy” or switched off as my system relied on dopamine arriving from the medication.
I am, as ever, super-optimistic that all will be fine and I will be doing my best to rise to the challenges – or at least muddle through in typisk fashion
Question:
Fabulous news!!! You now have the task of reprogramming the brain to be ‘NORMAL’. Just one point, when you say “drug exacerbated”, you may wish to qualify that point!
Answer:
Thank you! …what is meant by “drug exacerbated” is “worsened by the effects of prescription medications”.
@joannekarma
#RCtheParrot
