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thlarose

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I have been dealing with PD since 07' and I still haven't figured out how to answer people who ask me how I'm doing and also say - well "I hope you get better soon"

 

thanks for any replies...

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I'm with Luthersfaith on this "I'm fine. Thank you". End of story.

 

Explaining the complexity of YOPD to people who don't really want to know anything about it? I wouldn't even go there...just because someone asks a question on our health doesn't mean he's also much interested in hearing the real answer.

 

Another interesting reply to the "hope you get better soon" comment would be : "No i won't. and neither would you if you had the same freaking disease. do you know i'm losing more nerve cells each day than your shitty brain will ever use? No, of course you don't. Because you are an ignorant @SSHOLE". LOL....

Edited by christie
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Another interesting reply to the "hope you get better soon" comment would be : "No i won't. and neither would you if you had the same freaking disease. do you know i'm losing more nerve cells each day than your shitty brain will ever use? No, of course you don't. Because you are an ignorant @SSHOLE". LOL....

 

I personally refrain from swearing, or I try to, but this is funny sister!

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People often ask insensitive questions--it's generally out of ignorance--ignorance of the disease and ignorance of the impact it has on our bodies and our emotions. So, I just smile and thank them for their enquiry... and hope, hope, hope I display greater sensitivity to others who might have something I myself am ignorant of.

 

THEN, there are the bad days... when I think, "You can keep on hoping you big twit, but I won't be getting better any time soon, because I have a progressive, degenerative disease, that is INCURABLE!!! (I only think it, but do not say it, after all, what use is there in verbally smacking someone for being insensitive?)

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(I only think it, but do not say it, after all, what use is there in verbally smacking someone for being insensitive?)

 

I was just kidding of course. I am generally quite restrained and well behaved. I never swear. Maybe that's why i got Parkinson's in my mid 30's!!!

 

PS: thanks luthersfaith!

Edited by christie

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I I never swear.

 

Ups, wait, i forgot something...some time ago a real @#shole (driver) in the street shouted at me: "Can't you go any slower?", while i was crossing the street... Well, actually i can , but he doesn't know that, does he? LOL. Well, for some obscure (?) reason, i instantly forgot my good manners and shouted back at him as loud as i could the "F word".... and that's all i wanted to say about swearing....

Edited by christie

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Christie - making me laugh.... and that's good.

 

I haven't disclosed to too many people yet (YOPD diagnosis last year) because it isn't so obvious yet so i see no upside for others or myself in disclosing for now. i think i'll start widening the circle as it becomes more obvious.

 

But if i was asked this of someone, i'd assume they meant well but are just uninformed. I'd have two replies: one for most people, and one for those who i want to know what i'm facing or who i just feel like educating.

 

For most: just 'thank you' and a smile.

 

For those few others: "Well, PD is not something that gets better. The truth is that it's chronic (never going away) and progressive (it will only get worse). The most frustrating thing about it is that it's impossible to know how fast it will progress or how bad it will get, and the range of possibilities is from 'annoying/inconvenient' to 'debilitating/death (due to complications). That's the cold, hard, honest truth, and I want you - someone i care about - to know. But thank you for meaning well, as i know that is your intent."

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I usually say I'm fine. Most people just don't know much about PD. Most days I am fine. I choose not to educate them cause where would you start. You'd be there all day. Actually I'm one of those that has difficult time saying the right thing. That is why I probably say I'm fine.

 

M

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I was just kidding of course. I am generally quite restrained and well behaved. I never swear. Maybe that's why i got Parkinson's in my mid 30's!!!

 

 

I can see I'm going to have to be MUCH more careful about what I say here--to clarify, my comments were not to imply that I in any way think that anyone else here was not "restrained," or anything remotely like that! Of course you were just kidding--as was I!

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I can see I'm going to have to be MUCH more careful about what I say here--to clarify, my comments were not to imply that I in any way think that anyone else here was not "restrained," or anything remotely like that! Of course you were just kidding--as was I!

 

Kim, you should always say what you think and feel! you are the most romantic and kind soul and we love you!

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Well crap!! I'm also the most clumsy soul! I just typed a whole long post about Robins and winter and my friend's cancer and... oh, got distracted and decided to check mail... hit the wrong button and, poof! away it all went! Oh well... I'll pop back over to the other thread and have another go at it...

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When people ask me how I'm doing, I usually say PD has its good days and its bad days, (and if I am feeling well I say) Today is a good day so Im feeling well thank you. OR,if its a bad day for me I say, Today is not so great but I'll get through it. There will be better days. thanks for asking.

 

Hi everyone

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Well crap!! I'm also the most clumsy soul! I just typed a whole long post about Robins and winter and my friend's cancer and... oh, got distracted and decided to check mail... hit the wrong button and, poof! away it all went! Oh well... I'll pop back over to the other thread and have another go at it...

 

been there, done that !

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Well crap!! I'm also the most clumsy soul! I just typed a whole long post about Robins and winter and my friend's cancer and... oh, got distracted and decided to check mail... hit the wrong button and, poof! away it all went! Oh well... I'll pop back over to the other thread and have another go at it...

 

Kim. have you ever used the button to the right and bottom that says "reply options"

 

when you hit it you can get another screen that asks if you "want to view material written today"

 

and then it prompts you to restore that content.

 

Maybe you know of it already. It has saved me some grief before.

 

jb

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jb... Yes, I have, but I am woefully inconsistent with it! I am a writer by nature, so half the time when I intent to simply dash off a quick, short reply, I find myself halfway through a novelette before I know it... which is usually when I end up in trouble!

 

I will take your advise and try to be kinder to my frayed writers' nerves in the future!!

 

How are your big, fat Robins jb, still foretelling the arrival of Spring?? I hope so, I'm so, so, so ready for "outdoor" weather.

Kim

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I have only been dealing with talking to people about it for a little over a year. I have learned that it is easier most times to just say "I am doing fine thanks" because if I heard "Oh it's not just a little tremor thing" or "It's not so bad they are coming al long way with that" or "oh my grandma had that it didn't seem to bother her much" I was going to come unglued and hulk out. And yes I do swear sometimes! Realizing I was getting to that point I decided to give a plain and simple I am doing fine.

 

I have also told coworkers and friends to look up information on YOPD on the Internet and they have come back to me later and apologized for not knowing the complexity of the disease. Truely I don't think any one means any harm by what they say or not knowing. Discussing an illness with someone can be difficult and I believe people say things for the most part to make you feel better and some just plain do not know anything about the disease which is no fault of theirs.

 

A funny story about my 13 year old daughter. The day we told her and my older daughter about my DX. Her first question was, Are we still going to be able to go dress shopping for the spring dance this weekend? Then in November I went to a YOPD conference in Cincinatti. My wife could not go because we also have two young boys under the age of three. So I decided to take my 13 year old daughter figuring I could take her shopping and stuff after the conference. She decided on her own to come to the conference and learn about YOPD. After the first evening she told me she was sorry for the dress statement and said seeing how bad it can get upset her. I then felt bad for taking her and told her she should not go to the conference the next day. She said she wanted to learn more about Parkinsons and went the next day. Even though it upset her I think it helped her a lot because she understands Parkinsons is more than just a little tremor thing.

Edited by Brad24
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Good question,

 

I try to be honest, but keep it as short as possible. Others here have said that people don't understand YOPD...bingo! Everyone thinks my dyskinesias are tremors... When I explain that I don't have tremors, then they don't understand how I have PD... So, I explain about bradykinesia and rigidity... And it just gets more confusing. I find it a good rule to say more to those who are close and understand...and say less to those who just don't seem to get it. The simpler, the better. I'm all for educating the public, but sometimes I just don't feel like hashing through the whole thing again! I feel your pain...

 

So, do you still have PD?

 

Peace,

Mihai

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PD is so hard to explain in a few sentences. How I feel changes minute to minute. I have good minutes and bad minutes. I think people that ask how I'm doing really mean well. A lot of people tell me I look great - I want to say I feel like crap, but I just say thanks. I think it depends on who asks me. If it is a good friend I give more details otherwise I say I'm doing great.

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