The question was posed…

What would you like for Non-Parkinson’s patients to know? P

I have included a few of the responses that seemed representative of other PwP. Being a PwP, I acknowledge, just because you have seen one Person with Parkinson’s, you’ve seen one Person with Parkinson’s. No two people have the exact same combination of symptom’s. I noticed not very many people mentioned drooling. For me, if I could cease drooling, I’d know we were on the right track. Sue. …………………………………………………………………………… “First, our increasng klutziness (knocking over water glasses, slipping on the pavement, missing the chair on the way down and ending up on the floor, etc.) are not due to carelessness or ignorance, or lack trying to avoid an accident. A PD patient’s brain is  just not working at 100%. It takes a miracle of interconnected sensors, brain control centers, eye-body coordinatio, and so on, to walk straight and do other “ordinary” balance tasks, but the information channels between brain and muscles is faulty. Please note that we feel much more humiliated by our own inability to put the dishes in the dishwasher quietly than anyone else who is saying in a scolding voice, “Can’t you be more careful??!!” Robert

  • I completely agree with the comments above!  I think it is very important for others to understand the variability of PD.  Each person’s journey is different, and for that one person we focus on, the journey for that person is also extremely variable.  One day (or hour!) may be very different from the next.  I choose to consider PD my adventure.  I never quite know what is in store for me.  That can be positive as well as negative; if I am having a bad day, I know that tomorrow may well be wonderful.  The non-motor symptoms give me more trouble than the ones that are visible, so I think I would want someone who does not have PD to believe us when we say we can’t do something on any given day, even if we were able to do that yesterday and may again be able to do that tomorrow.  I am blessed with family members who understand that, making it much easier for me to take each day as it comes. ” Marlene

“If you are living with PD (I am loath to say “suffering from”) you probably recognize the not so subtle suggestion in the responses that the non-motor symptoms of PD are often the most devastating part of being a club member.  I still cringe when family members and friends say “…but you look so good.”  Yes, I too have motor symptoms, but Sinemet is a formidable ally in the struggle with most of them.  For most of the motor symptoms I can tolerate the situation by finding workarounds or thinking my way through a situation (e.g. how to button a shirt) or setting up modest, achievable goals (working in the garden in 15 minute sessions).  Since everyone who knows my condition recognizes the characteristic motor issues of PD, I need only do things slowly to indicate the reality.  But the sleep disturbances, absence of restorative sleep (Occasionally I need 12 hours of sound sleep only to wake up exhausted), fatigue, brain fog, anxiety, depression, voice changes (which have made me difficult to understand), etc.  are far more the thieves of life which are not visible to others. When I am asked how I feel, I respond with my immediate sense but always add the caveat that the non-motor symptoms are the true torture.  I then provide a litany of those symptoms.  I also add the fact that the social withdrawal which is also a reality of this condition is more due to the non-motor symptoms.” Bonanno

‘My reactions are totally different to Bonanno‘s. When someone asks me how I am, I actually smile/try to smile depending on the day, and say ” not too badly thanks, how are you feeling?” I realize that when someone says ‘how are you’ it is just a way of saying hello.  They actually may be concerned but it is not their fault or problem that I have PD.   It is certainly not my fault but it is my problem, and I really don’t want to burden them with my hassles, that is, not if I want them to remain my friends.   I know they care, and that’s what counts.” Clive

Author: suerosier

In May of 2018, I was diagnosed with Parkinson's. After researching, I believe the symptoms began to manifest themselves years prior to last year. The purpose for my blog is to share what I have learned (with an index) to save others time as they seek for answers about, symptoms, therapies [and alternative things to try], tools I use, Parkinsonisms, recipes, strategies, clinical studies, words of encouragement or just enjoy the photos or humor.

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