I am an ICU doctor who essentially diagnosed myself with PD at age 40 - 10 years ago this past summer. It is unclear if "knowing" what I know is a curse or a blessing! There are three things of which I am certain- 1) having a chronic, progressive neurologic illness is disgusting, 2) I will fight to the end, and 3) experiencing this illness has made me a better physician.
For better or worse, I have always been incredibly introspective and a consummate perfectionist. The most dramatic realisation I've had over the last decade is how incredibly powerful the "mind" can be. It is not possible to overestimate the mind-body connection in PD. Months prior to diagnosis, I had subtle, minimal complaints- within a day or 2 of having been diagnosed- I became "end-stage Parkinsonian" —stooped-festinating-blank stare! After reassurance from my doc- I reverted back.
For me, fluctuations are much more strongly related to mood, expectations, anxiety than medication. I almost believe (almost being key) that if I could convince myself I don’t have PD- I wouldn’t. Some related points:
1) Anxiety (and relatively resistant) anxiety is par for the course in Parkinson’s. There is no question that it makes every symptom worse, and depending on the cause, situation, I can go from “normal” to a ‘zombie” and then to normal again in the absence of medication over the course of seconds.
2) The anxiety/panic cycle begins with attention on a new or strange bodily sensation that is erroneously attributed to danger or exaggerated causing a ‘fight or flight” reaction—e.g. adrenaline release—that leads to symptoms nearly indistinguishable from a PD “off”period—dry mouth, mental fog, discomfort, etc- the fear of this happening again leads to avoidance and more attention to uncomfortable thoughts/sensations- etc. For us, not only are strange, uncomfortable situations plentiful but the anxiety they produce leads directly to more/worse sensations. In trying to deal with what was becoming a vicious cycle for me- I read-and read more. Three main immediate treatment strategies emerged: 1) distraction 2) mindfulness- using some form of breath control 3) “go with the flow” and welcome anxiety- “ask for more”. I tried 3 first- a complete disaster!!. Then I "concentrated" on 2; if caught early enough, breath control did work to an extent, though I believe as an example of #1- distraction. Intense focus on anything leading to distraction is the best non-pharmacologic therapy for me. Keeping busy and interested is my best defense ( why do you think I'm writing this-lol).
3) Breath control- may be the biggest, most widely disseminated “hoax” ever. in the hospital, when a panicked patient or family member feels faint or tingling around the moth or in fingers, they are hyperventilating. I have used “rebreathing” into a paper bag on many occasions with success. I tried on myself- it felt utterly horrendous. It will stop the tingling, etc but worsened my anxiety. I now believe that my “belief’ that it was medically correct and my “hard sell” to the patient took advantage of the very powerful placebo effect!
The idea behind all forms of slow deep breathing is that it activates a parasympathetic (vagal) response which helps quell the adrenaline driven sympathetic response seen with anxiety. After spending hundreds of hours trying to validate this concept, I am not able to. Breath control can work- especially if you believe it will (placebo effect), it distracts you or gives you a sense of control when you feel out of control. It may also decrease anxiety via other effects on the brain. Balancing the yin/yang of sympathetic/parasympathetic nervous systems I think is a whole lot of b……..t.(e.g. many "convincing", flawed papers that concluded that breathing in through one nostril and out through the other activated the parasympathetic system.
4) The “placebo effect” is real and known to be strong in PD. Use it to your advantage—believe that the coffee will make you dramatically better or a sliver of your L-Dopa will make a difference- it will!