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PD- "mind" interaction

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drs55655
PD- "mind" interaction

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!

DivineR

drs55655,

I liked your post, mainly because I too use breathing and a mantra as a distraction tool to my worries. I think keeping busy is essential. Just as I got my diagnosis I left a job after 21 years. But after having a few months off, I actually felt like an old woman. I got myself a partime job local to me and I feel 'normal' for that time at work. Learning what works for the individual is trial and error.

DivineR

gus

yeah that was great reading do you still work if so do you get very tired, and go into off state ie using all meds up working out i swim every day but do not over do it also walk dog since dx parky lost 5 stone gave up drinking & smoking did enjoy both of them but found myself better off them as drinking cancelled out meds & smoking made me feel dizzy feel so much better for exercise.

Eileenpatricia

Knowing about the "five year honeymoon period" regarding achieving optimal effect of PD drugs, I spent best part of year worrying about perceived acceleration in symptoms but here I am 8 years from dx and still no one not in the Parkie world would know I have Parkinsons.  Mr.Parkie eats away at your confidence if you let him.  Never assume you can't do something until you categorically find you can't..  

fedexlike

 

 

   Hello  drs55655

                              I was going to reply but apart from you  being a doctor, and I  a muckshifter  ( excavators ) the  words are exactly as I would have written'

                                                                             FED

fedexlike

Sorry about that having work done in home, as i was saying your  post ties in with  a lot of my thoughts and actions in  the war with pd  so I dont feel I can add  much  other than when  the beast shuts me  down 99% I often  shout  WELL IS  THAT  IS THAT  ALL  YOU  CAN  DO,,  and  forcemyself to do  something  (distraction) and  it  works, the only other thing is  my  wife  wonders  if  you  do  home  visits/???  cant  think  why.

                                                            Regards FED  HAVE A GREAT   CHRISTMAS

Donkey

Thanks for really excellent posts that I entirely agree with.  I find distraction the best tool and I also agree with placebo effect and how it can be used.

i think the fear is a very big part, the fear of what will happen and then following this with feeling it is happening right now.  A domino effect as fear increases the shaking.  I totally identify with what everyone here has written.  It makes me feel 'more hopeful' that I can cope.  I was diagnosed 7 months ago but have had it about 7 years, possibly more.  I have retired at 62 and my biggest problem is finding things to distract me.  Days are long but I do voluntary work, I love books, I go round charity shops looking for books, I go for walks.  I am currently looking for more voluntary work.

Thank you again because it has been very helpful.

 

john947

Hi

I also use distraction as it helps control my myoclonus when active.

But have you ever heard of mental comfort.I have it most of the time now with a acasunal event.

My present struggle is whether I keep my bigger boat which serves me well.But I do find slipping some in all my tackle I like taking people but tire of doing the work alone as few have expertise.I would like to take others who are institutional but their policy prohibits them to go

There is a "spot"the doctor has.Nervous people dont like change.maybe a different hobby will do me better than fishing

Now when I did last year i was happy ,maybe happier had i spent more time with my grand kids instead.But how do you get them away from the gadgets or what Doctor Low called novelties.

Yes Dr.Low would be sad today of what has become of us.he talked way back then of the endless drive of making the perfect machine thus making humanity nonexistent.

But I doubt even in a millinium will it ever happen.

john