Can someone please tell me: How did I... - Parkinson's Movement

Parkinson's Movement

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Can someone please tell me: How did I get here?


Fairly frequently as I wake in the AM The question is floating before me. I live alone, never considered that. I live in Santa Fe NM, never thought I would leave NYC. I am wrestling with several Dxes one of which is PD. Anyone out there have an answer? (just kidding).

Today I want to address the way in which people try to be supportive ...and miss the mark. Example; The question "How are you?" Aarrgh! Is that a social twitch not really wanting an answer? Is it sincere? What do they want to know? Did the PD disappear over night? Can I say how bored I am with dealing with, talking about, in general focussing on my health or lack thereof.? Think I'll stop for now and go outside to enjoy the sunshine and clear air. gran5-

20 Replies

When people ask me "how are you feeling?" I just wanna say to them "I HAVE PD HOW THE HECK DO YOU THINK I`M FEELING?" but I dont...I stay calm and just say "oh I`m ok thanks" then I make a point of having a joke about my shaky hand, they see I can joke and have a laugh and it seems to make them feel easier. I try never to talk about PD in th negative...I cant be doing with that.

Wish I could enjoy the sunshine but Its very cold and frosty its 7.30pm....and dark!! lol

Take care

Andy :-)

I usually just say "good days bad days" and change the subject! Most people do not really want to know, I have found this with several people ;~)

Hidden in reply to christinemc

I also say "some good and some bad" and :)

If they continue to ask I'll answer more questions. If it is just meant to be a "Hello", I'll answer with the above or just :).

i agree that people dont really want to know '' how you are '' they are just being polite...

How are you is an almost impossible question to be asked. I can wake up feeling good and then things could have gone downhill by lunchtime.

Also every day is different. Some days my tablets just do not work for an unknown reason and I just don't want to do anything. I am sure people are just being polite so I usually say "ok, thank you" and they very rarely ask anything else.

Owenbob in reply to Court

Same with me. Don't really understand good and bad days. Mornings are usually bad, and by late afternoon and evening, I feel pretty good. May be the way and time I take my sinemet

Court in reply to Owenbob

I am completely the opposite. Good in mornings, not so good in afternoons and little tremor control in evening.

I take Stalevo, but don't know why my days should be quite so opposite to yours.

PatV in reply to Court

I am opposite too. I know it's a reaction to the C/L in my gut. Causes freezing in ab muscles, next thing I'm off all over (think armadillo) :P

I'm pretty much alone most of the time. I space out a lot and am having mobility problems, I have to go to NM to remove my persnal items from the house that my ex dumped on me. A fine gift yes but left it a disaster. With living on a fixed income I have no choice. My sis and her husband are taking me down and helping but I don't know if I'll survive the trip. I'm still recovering from the flu that I got at Xmas, head cold that won't go away and I feel like crap. Wish me luck! Leaving tomorrow..packed or not. You'd think riding in a car would be okay but it just wipes me out to go anywhere.

gran5- in reply to merlethegirl

Where in NM ? I'm in Santa Fe. Maybe we could have lunch.

PatV in reply to merlethegirl

good luck. I know -- travel is torture. No place to stretch. Take it easy

Hidden in reply to merlethegirl


I hear you, just having PD is exhausting and ppl that don't have PD just look at me like I am crazy when I make such statements.

Overall, things are draining on my energy. Music I have found gets me hyper and gives me energy. It doesn't always work but for the most part a favorite CD turned up loud with the bass cranked and the tweeters on a high.......... puts me in a better mood. I am a Heavy Metal and Hard Rock junkie..........

Music I have found has really helped me with all my emotions........ from anger and frustration to Happiness! :-)

Heck now I can't remember what i say.! . I know that inside i say

Bless ur hearts u have no idea do you.. It would help if u wore my shoes for a day..... even an hour..! Remember to smile Larry!! Smile smile SMILE

Hidden in reply to Larry_H


I can relate, I have this friend that has this annoying habit of asking me "Well I don't know what you can do? So you make the plans". This comment always angers me and I respond with the same answer everytime "You've known me for 7 years, you know i have good days and i have bad days and you know that i cannot predict what tomorrow will bring. So if I am having a bad day you know what i can do and if i have a good day you know what I can do. I wish you could spend just 24 hours trapped inside my body so you would know what living with PD feels like and how annoying that comment is and then I would take the PD back from you because I wouldn't wish this on my worst enemy (that is if i had any enemies)

Best wishes to All,


Smiling is good. It uses a lot of muscles. And it can counter act the PD mask. It took me a while to realize that my historically smiling face now looks stern even when I am happy. :-)

Hidden in reply to gran5-


re: smiling

Whenever someone takes my photo I deliberately exaggerate my smile so that it shows up in my photos. I feel like my photos should turn out with me smiling like the Chesire Cat in Alice in Wonderland but nope it is just a regular smile. If I just do what I think is a normal smile I am not smiling at all in my photos.

It seems so strange to be in this body that used to work and now seems so foreign.

How DID you get out of NYC? I'm pondering that question--to leave or not to leave? I smile a lot when I don't even know I'm doing it. More like a grimace, I suspect. I only know this because strangers smile at me (in NYC!) Anyway sometimes I say "Good!", sometimes I say "better" or "asi, asi" (soso) and sometimes I go into gory details! :D

i love NYC, always have, here comes the but ...1. it is a city for young people, 2. as much as i love it I can walk around my place here all day and my white socks stay white and that same stuff doesn't hang in the air, 3 Santa Fe is not cheap unless you compare it with NY and4. I have been in love with the SW for years, still am. 5. then there is the pace sooo much sloower and there are people and things I miss from the East Coast culture but I am content for now.

My decision in dealing with traveling: I got a platinum card. It cost a larger membership fee, BUT it gives me access to the lounges, where there are free snacks and some have food for purchase. Also comfortable seating and QUIET atmosphere.


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