We have now put into place various quality of life improving interventions and, in doing so, have greatly reduced my own symptoms. So we have decided that the next phase of the Out-Thinking Parkinson's project is to now see if I can reduce my L-DOPA medication, with the agreement of my neurologist. One reason for doing so is entirely personal - my dyskinesia is already quite bad at times. Since I am still in my 40s and have such a long way to go, it frightens me how much worse this could become in later years - if I continue down the standard path of relying on ever increasing dosages of the L-DOPA meds.
The second reason is simply curiosity about the important balances between medical interventions and diet, exercise and mental health approaches. Can these latter, if optimized, compensate and help reduce the drug burden? In particular, we are interested to know if these simple interventions can be at least, or even more, effective than having Deep Brain Surgery?
The third is scientific. From the outset, we have been all about self-experimentation and documentation. What if it is possible to reduce the drugs and yet have better outcomes? Over what timeframe would re-stabilization occur? Either way, we believe strongly, for sake of the scientific records, we should at least try our very best and record what happens for posterity.
It is with this background in mind that I made this video today. Having now been on lower dosages of meds for a couple of days, my bradykinesia (muscle rigidity and immobility) have become pronounced again at times. I'm having to pull out all the stops of our interventions to compensate. One of the most powerful of these when it comes to bradykinesia is music.
I have written a couple of times about the power of music in my articles
but this is the first time I have recorded what I learned about it's critical importance to people with Parkinson's.
This video is raw, real and very honest. You will see me break down and cry and release other emotions. This is, I feel now, my most important and special contribution so far. If just one piece our Out-Thinking Parkinson's journey does survive into posterity, I hope it is this.
Powerful stuff indeed.