Hi. Does anyone have experience/ideas about regulating extreme ons and offs, reducing their severity and working towards a smoother, less frenetic, less anxiously-driven lifestyle/approach to having PD?
I am about 6-7 years in to PD, qualify as ‘young onset’ (I was 43), and recently caught coronavirus just as I was reaching a point of too-high Sinemet use anyway, causing me to further spike my Sinemet use and instigate a sudden ‘brain crash’, and Dopamine Dysregulation. Ons were hyper. Offs seemed tantamount to paralysis.
In the 6 months since, I have been learning how to be calm about my offs, and calm about my ons too. I have re-trained my sense of paralysis by associating movements with music, theatricality and humour, swaggering John Travolta-style to improve my gait, or acting out We Will Rock You to extend the arms and fingers! With the help of some antipsychotics, my sense of panic has all but gone, too.
[I am now off antipsychotics, driving again a little, and starting a staged return to work. I don’t have any of the compulsive behaviours, and have always been quite meditative and placid as a person.]
But here’s the thing - stress still causes offs to be bad, and relaxing situations mean I can be so at ease that I can go far longer between levadopa medications. So the ‘brain-training’ could do with continuing, and it seems to me that this overlaps with a wider issue of ones attitude to life - why I find social situations awkward, why I get anxious about my work, why I worry about whether I’m a good parent, why I am so hung up about the success of my football team, whatever etc. etc. If I could be more at ease with life generally, surely my medicine-dependent cycles would diminish further?
So, does anyone have experience of improving their PD symptoms, particularly dysregulated ones, by re-training their brains or attitude to life. Perhaps it could be particular exercises, or adopting a new philosophy, or even recognizing a past trauma and releasing it somehow. Asking for practical help reasons, but also to share what I expect are common experiences for many of us PDers.