Stupid Things People Say -- Your Reactions To Them

[Radioguy]

Hey all...

For an upcoming podcast, I want to touch on the stupid things well-meaning people say when they learn you have PD. Stuff like, "But you LOOK fine..." and "Oh, I get a twitch in my hand from time to time too!"

Also, I'd like to know how you react when these things happen. Do you say anything? Do you just ignore it?

Also... how do we educate folks without sounding "whiny" about our situations?

Thanks, and give me a listen if you get a minute -- http://parky.billywisdom.com

Bill

[Jaye]

Them: "You look fine. I really mean it. You look terrific!"
Reply A: "Thank you very much. It only takes $12,000 worth of prescription drugs a year to keep me looking this terrific on my good days."
Reply B: "Thank you very much, and thank the drugs, the doctors, and the guy that drove me here. i know you understand because of your lupus/arthritis/gangrene/cancer." Be prepared to listen to their latest story, but the subject is off PD, at least.
Reply C: "Thank you very much. I wish the drugs would work all the time like this. Of course none of it could be A-G-E, ha ha."
Reply D: "Thank you very much. That's so good to hear when I feel so crappy inside." This one is reserved for the gal who is always "checking" to make sure I haven't gone helpless like her relative who has PD-or-was-it-Alzheimer's/MS/Shy-Drager. Either she expects this to happen in a week's time or she enjoys reminding me of it.

Anti-whine attitude for those who want to hover: "No, no [you don't need to carry a chair for me over here to the middle of the hallway], I need the exercise, and besides, the PD slows me down but it doesn't stop me."

Them: "You have PD.? Oh, I take vitamins and eat properly!"
Reply: "Ever since the days when people had to go to a hard-to-find health food store to buy stone-ground whole wheat flour, so have I, honey, so have I."

Them: "That's contagious, isn't it?" Oh, how tempting it was to say yes. Instead I pointed out that if that were so, all the wives and husbands of people with PD would come down with it.

The podcast is terrific. I found it easily by searching iTunes for Parkinson's.

Jaye

[stevem53]

The one I always get is..

How are you feeling?..Not Hi..Whats up?..Always..How are you feeling?

I reply with good days..bad days

Ohhhh..But you look good!

Remember folls.."It is better to look good than to feel good"..:rolleyes: ..Was it Billy Crystal who said that?

[paula_w]

In answer to the question: "How do you feel? You look good," Just tell them "I look much better than I feel" and let them decide.

Paula:)

[Radioguy]

Them: "You look fine. I really mean it. You look terrific!"
Reply A: "Thank you very much. It only takes $12,000 worth of prescription drugs a year to keep me looking this terrific on my good days."
Reply B: "Thank you very much, and thank the drugs, the doctors, and the guy that drove me here. i know you understand because of your lupus/arthritis/gangrene/cancer." Be prepared to listen to their latest story, but the subject is off PD, at least.
Reply C: "Thank you very much. I wish the drugs would work all the time like this. Of course none of it could be A-G-E, ha ha."
Reply D: "Thank you very much. That's so good to hear when I feel so crappy inside." This one is reserved for the gal who is always "checking" to make sure I haven't gone helpless like her relative who has PD-or-was-it-Alzheimer's/MS/Shy-Drager. Either she expects this to happen in a week's time or she enjoys reminding me of it.

Anti-whine attitude for those who want to hover: "No, no [you don't need to carry a chair for me over here to the middle of the hallway], I need the exercise, and besides, the PD slows me down but it doesn't stop me."

Them: "You have PD.? Oh, I take vitamins and eat properly!"
Reply: "Ever since the days when people had to go to a hard-to-find health food store to buy stone-ground whole wheat flour, so have I, honey, so have I."

Them: "That's contagious, isn't it?" Oh, how tempting it was to say yes. Instead I pointed out that if that were so, all the wives and husbands of people with PD would come down with it.

The podcast is terrific. I found it easily by searching iTunes for Parkinson's.

Jaye

Excellent stuff! Especially about it being contagious. Then you should sneeze on them. :) I'm glad you're enjoying the podcast.

[stevem53]

In answer to the question: "How do you feel? You look good," Just tell them "I look much better than I feel" and let them decide.

Paula:)

2 points Paula!..I like that!..:D

[BEMM]

The podcast came on immediately, and I like it very much. Look forward to hearing the next hundreds of them.
To people who tell me I'm looking fine, I say, 'Thank you, I feel great!" On good days it's quite genuine, on not so good days it is obvious to both parties that the whole exchange is a sham.
When I'm in a wicked mood I may say, 'Thank you, I'll get over it yet." And I suspect some of them believe me.
I hate making people embarrassed. I have a life long, involuntary, irresistible need to defuse embarrassing situations, which often makes it difficult for me to explain to people that I have PD.
I'm sorry to admit that when I'm asked if I feel all right, I tend to say, 'It's not as bad as it seems.'
I'm no help at all in spreading information about PD.

birte

[rd42]

Them: "That's contagious, isn't it?"
Me: "Don't make me touch you with my shakey hand!"

Robert

[boann]

Them: God doesn't give us more than we can handle.
Me: Oh.... but what about all the people in the world who commit suicide?

Them: Boann, I eat my scrambled eggs with a spoon, too - it is just easier.
Me: How nice for you!

Them: We all have our crosses to bear.
Me: True, but all crosses were not created equal.

Them: Come on, dyskinesias are sort of *expected.*
Me: You go right ahead and expect them - be my guest.

Them: You have a boyfriend? And he doesn't have Parkinson's? He must be *really* nice!
Me: Oh. My. God.

Boann

[KC Tower]

Why do you seem to care so much what people say????

Lots of stupid comments are made about all sorts of things to all sorts of people.

[GregD]

"We'll have a cure or better medication in 5 - 10 years".
Ok, so where is this cure or better medication? It's been 10 years.

"How you feeling? Great! I always shook, shuffeled my feet, and moved slowly.

"But you look good". I can't help it, I was the good looking one of the litter.

'Can I help you over to a chair"? No, where were you yesterday when I was froze in the middle of the street?

" But there isn't any pain with Parkinson's". Who says so? If not I'll just let you have this for a few days.

GregD

[jes123]

but i've gotta believe that it is just their inablility to cope with their own reaction to seeing someone who was "normal" just a year ago, develop symptoms of pd. it slams them face to face with their own mortality and not many are prepared to think that if it could happen to you-it could just as easily happen to them. what hurt me the most, was when a girlfriend saw me out w/ my kids who were at that time about 10 and 8. she came up and spoke directly to my kids, as if i weren't even there. she asked the kids how their mom was, what had i been up to, and sent her love all without meeting my eyes. years later, emboldened by several cocktails, i confronted her (kindly) about this and she admitted that it was to her a life-altering moment; that she was shaken up so deeply in her soul that she couldn't look at me without crying. i told her that it was ok to cry but it was never ok to pretend that i wasn't there. we are friends again and she is learning how to deal with my disease. another thing that i use as a teaching opportunity is when little kids stare at me and poke their parents and ask "what's wrong with that lady?" as the parents try to scurry the child away, i talk to the kid and tell them that i have a disease and it's called parkinson's. i tell them that they can't catch it but it makes me like the tin man in the wizard of oz. he couldn't move without his oilcan and i can't move without my medicine. that is usually all it takes and i have a young friend who is know on the road to becoming pd aware.

[Suffolkchris]

The one I always seem to get (and really hate) is:

"didn't they just find a cure for that?"

Firstly - who are "they"
Secondly - How come no one tod me!!

Chris

[Radioguy]

Why do you seem to care so much what people say????

Lots of stupid comments are made about all sorts of things to all sorts of people.

Because I'm doing a podcast and it's a topic of conversation.

As you may be able to infer from the reaction, it's something a lot of us deal with.

Why did you respond to a post that you don't care about?

What do YOU say when well meaning people ask dumb questions?

[paula_w]

i taught phycially impaired (as they were classified in FL) for the last ten years of my job. I had a volunteer come in to help several days a week - an adult with Cerebral Palsy but as those cases go, a mild one. It was enough to "handicap" her in every way that counts if you want to try to work. She had drive, but was completely sarcastic and angry about always having to point things out about her CP.

We had best be careful we don't become like that to a sour degree. Her favorite bust was when a teacher would actually park in a handicapped spot - she'd go after them on her scooter with eyes blazing.

But I can see she was part of my preparation, as were so many of the students.

To me these are more like: ~~ Things That People Repeatedly Say that Eventually Become Stupid To Us - Get Past This Stage People and You Will Be Showing Early Signs of Becoming Someday Able to Communicate With Disabled Person~~

It doesn't exactly roll off the tongue. I like the new funny answers.

paula

[KC Tower]

Bill, No idea where you got the idea I don't care about the post. I do care about the post and know you just made a little assumption but I do not care about the comments or dumb questions.

I just hope that we do not become known as a "bunch of stupid Parkies" based on our responses to stupid comments or questions.

None of us is immune to giving or receiving stupidy

People that make stupid comments or stupid questions will not care how well thought out or witty our responses are.

Because I'm doing a podcast and it's a topic of conversation.

As you may be able to infer from the reaction, it's something a lot of us deal with.

Why did you respond to a post that you don't care about?

What do YOU say when well meaning people ask dumb questions?

[EnglishCountryDancer]

It is not just the person with Parkinsons that gets thoughtless comments their partners get ones that are often even worse if that is possible.I am not going to write them here as they are just so painful. I have been so stunned by some that I have been left speechless.

[wendy s]

Jaye, I love your reply A! I'll have to remember that.

People say "And how are you DOING?" And I always say "Oh, I'm great" . Since I hate talking about PD, I follow that up by my new treadmill, or how far we're planning to hike this summer, especially to people who couldn't do what I do because they're so out of shape. Gives me a moment's satisfaction! Long may it last.

I really hate telling friends we haven't seen for awhile who don't know because they're always so shocked and do say stupid things and then feel they have to apologize afterwards. I think now that I should have just told everyone I know as soon as I was diagnosed, but at the time I just couldn't do it.

[Radioguy]

Bill, No idea where you got the idea I don't care about the post. I do care about the post and know you just made a little assumption but I do not care about the comments or dumb questions.

I just hope that we do not become known as a "bunch of stupid Parkies" based on our responses to stupid comments or questions.

None of us is immune to giving or receiving stupidy

People that make stupid comments or stupid questions will not care how well thought out or witty our responses are.

So, your answer is what then? Give me somethin' here, Ken? People SAY these things to us. Maybe they haven't to you, since you've been dx'd 4 years and one month and aren't on meds yet (and good for you, I hope that trend continues for years).

But to a lot of US who are on and off and looking good one minute and shitty the next, we get ASKED these questions. Therefore it's an appropriate topic for a forum and a podcast aimed at PWPs.

If you don't like the question, I suggest you move on. There's nothing to see here. But if you have anything to add to the discussion, I'd love to see it.

[KC Tower]

Jeesh Bill, you titled your message "Stupid Things People Say"

They are just making conversation/greeting and the response depends on both the stupidee and the stupider along with the general circumstances, surroundings, and others in the group.

If it is a stupid comment/question either get stupid back or ignore it but dont bring PD into a situation where nothing is going to be helped. "Everything is not about PD" is not simply a rumor.

The only time I use PD in other than a more serious detailed conversation(involves multiple give/take) is to respond to a "how are you" with

"Still stiff and shakey in all the wrong places" and that only with friends :)

[Todd]

Some of these replies are great. Thanks for the ideas!

Some people mean well and some are just plain ignorant and insensitive. You just have to respond accordingly.

Regardless, I'm one of the PWP's that tells everyone and anyone that I have PD and what PD is all about. I take those opportunities to educate, advocate, and make as many people aware as possible. (I know a lot of you don't take this view and I respect that.) I've personally found that a large majority appreciate the information and I personally believe that the more they know, the better off everyone is.

Doctor: I have good news and bad news about your PD diagnosis.

Patient: What's the good news?

Doctor: PD won't kill you.

Patient: And the bad news?

Doctor: PD won't kill you.

Todd
PDTalks.com

[Radioguy]

Some of these replies are great. Thanks for the ideas!

Some people mean well and some are just plain ignorant and insensitive. You just have to respond accordingly.

Regardless, I'm one of the PWP's that tells everyone and anyone that I have PD and what PD is all about. I take those opportunities to educate, advocate, and make as many people aware as possible. (I know a lot of you don't take this view and I respect that.) I've personally found that a large majority appreciate the information and I personally believe that the more they know, the better off everyone is.

Doctor: I have good news and bad news about your PD diagnosis.

Patient: What's the good news?

Doctor: PD won't kill you.

Patient: And the bad news?

Doctor: PD won't kill you.

Todd
PDTalks.com

Excellent point -- the day I was diagnosed, the doctor said something to me that stuck. And I use it to sign off the podcast.

"Remember, it's not a death sentence -- it's a life sentence."

[Jaye]

I'm glad so many of you see the good humor in my responses, as I think humor is the best way to help the other person out of their discomfort and to keep the lines of communication open. (If I can't keep it all humorous, I do keep it matter-of-fact.) I did use Reply A very seriously, though, when I was the subject of Grand Rounds in Psychiatry at Johns Hopkins Medical University a few years back. I'm not sure the Chairman of the Department, who was interviewing me and my husband about my PD, exactly appreciated it, but I turned to the attendees in the big old lecture hall and repeated: "Ten thousand dollars!" (things were cheaper then).

My friend GregW1 refers to the drugs as our "chemical costume," an expression which can help people understand "on" and "off." It was also he who coined the term "clognition" to describe our bradyphrenia, or slow thinking, and our loss of executive function, or the ability to prioritize, routinize, multitask, predict outcomes, and so forth.

People who are interested enough or kind enough to stick around for the clognition story are always saddened by it, but I reassure them that I still have all my intelligence, that I can still think, and that it's NOT Dementia. I tell them that for one thing, doctors have learned, from neuroimaging of my brain and others, that we can form alternate pathways in our brains by determination and practice, regaining some of the lost skills. In the meantime there are workarounds we can use to accomplish tasks, although they may not be efficient enough to, say, keep us doing our jobs well enough to keep them. I say that I can still do a lot of things around the house, like build "assembly required" furniture. I count on the word "still" to carry a big message.

Jaye

[jes123]

i agree with what both of you have said. i cannot (having been dxed now for over 17 years) imagine not telling people about my disease, but i also make sure that it is the appropriate time; i'm sure not going to whine about my problems when my little sister is crying because her husband is dxed with stage four melenoma. the opportunities are there for all of us to reveal as much or as little as you are comfortable with revealing about yourself. i have always been somewhat of a wise guy and sometimes i can come back with zingers, especially in unexpected circumstances but i am trying to make my sarcasm into a gentle ding rather than a full frontal assualt. i have begun to understand that you can keep your personality and also be an influence when you don't allow yourself to go the level of the person who has (usually, unwittingly) insulted you. i'm not saying that this works for everyone, only what works for me.

[Daffy Duck]

Also... how do we educate folks without sounding "whiny" about our situations? Bill

It's not whining, It's educating.

If you explain your situation, people won't say stupid things instead.

[Teretxu]

I always say I'm doing fine. The people who like me will be relieved and those who dislike me will be disappointed.:p

[virginia mcintyre]

For someone who has just joined this group, I seem to have had a lot to say already...but, I just wanted to comment on the humor that was so evident in your response to this topic!!! Laughter...the best medicine...Jes...I thought your more serious response, i.e., that many times, it is the inability for others to cope, etc. that causes the seemingly ignorant/stupid questions..and your approach with children is an excellent one...and, to Todd...and I think Jaye, too...taking the opportunity to educate others about this really very-little-known-about" disease is something that I try always to do. Thank you for the laughs...I needed them...

Virginia

[K Hamilton]

Some of these replies are great. Thanks for the ideas!

Some people mean well and some are just plain ignorant and insensitive. You just have to respond accordingly.

Regardless, I'm one of the PWP's that tells everyone and anyone that I have PD and what PD is all about. I take those opportunities to educate, advocate, and make as many people aware as possible. (I know a lot of you don't take this view and I respect that.) I've personally found that a large majority appreciate the information and I personally believe that the more they know, the better off everyone is.

Todd:
I'm with you. I went from fine to shakey-all-over in one weekend, so my choice was either to go public or drop out of society for several months until things got stablized. Economics dictated the former choice, and I haven't regretted it.

I don't mind when my friends and acquaintences ask me "How are you doing today?" I tell people at business meetings first thing that I have Parkinson's so they can take their mind off of the shaking hand and focus on the meeting. Sometimes they ask questions, which I use as an educational opportunity, sometimes they just say "Oh, okay", and when they say "Oh, that's too bad, I have an uncle who died of it, you must feel terrible" I respond that it really isn't too bad, and that so far it is more of an adventure. Every once in a while someone will say, "Oh, I hadn't even noticed" when I have observed them staring at my hand.

Maybe I've been lucky, but I've never had anyone say anything that I could really take umbrage at.

[Thelma]

This disease can be the most illuminating for those who suffer from it in the fact that people have the opportunity to ask questions and have you respond.

I have cancer and it is not showing in my outward appearance and that fact makes it the lonliest disease. No one asks and I have not the opportunity to inform about it unless I bring it up and it then takes on the curse of whinging.

She's asking for pity, no, just a moment of your time in space.

Ignore what you asume is the reason for asking about Parkinson's and be gratefull when you walk away having hurt no ones feelings that this opportunity presented itself to you.

They will in some way be effected and how they react is not your concern. You did your part for advocacy when you responded to whatever they asked.

Your responsibility is to ensure that you leave them wondering about how come they didn't know about Parkinson's in the first place.

Everyone of us and them are distinct individuals and to preconceive a response to what they ask is not being honest to that individual.

Parkinson's hurts and they can have an unseen story of their own to tell, the question is, Will you be responsive to them as you want them to be to you?

Time to reflect on your anticipated answers to people, I hope so..

[K Hamilton]

Thelma:

Wonderfully said!

[turtle95610]

I don't get "You look great!" comments anymore.....
They say, "Well you look like you're handling it well", or, "You're not shaking"
I say, "Well, I hope you're not around when my carriage turns into a pumpkin, it's not pretty!"
This usually generates plenty of questions and the PD education begins.......

[Suffolkchris]

Turtle

I also use the Cinderella "pumpkin" analogy as a light hearted way of excusing myself for any early departures from work, parties, functions etc when I feel too fatigued to carry on.

eg. " Sorry I have to leave now as in 15 minutes I turn into a pumpkin"

Because if I am too tired to stay, I am certainly too tired for a PD discussion.

If that generates further questions I usually say that my "life support machine" was too bulky to get in the car and I need to get home so I can urgently get reattached to it. Followed by the parting shot "afterall I am a man barely alive". All said with a big smile ofcourse.

Chris

[dahlek]

I literally almost 'tripped' onto this thread by an overfast click of the mouse. I'm from the Pn group just below you and I'm going to recommend it to all of them as good reading...to old timers and new members.

We have some things in common, neuro stuff is always something others just register as 'not good'...is it catching? The wider our 'vocabularies' to deal with it all is to ALL our benefits.

Thank you all! - j

[darlindeb25]

Yup, I agree with Dahlek--great thread. I understand exactly how you all feel. I receive my share of stupid questions too. I have celiac disease and PN. My intolerances cause my body to react somewhat differently and I have a weight problem, so naturally people think I am crazy when I tell them the foods I can't have--"you look healthy enough" "I would never guess you are in pain" and my favorite, from the optomitrist I work for, "Celexa will make you feel so much better and I am betting all of your intolerances will go away too, even the celiacs!" He still will not admit that celiac disease is an auto-immune disease or he just can't admit I have it. Doesn't matter, does it?

I loved some of your answers, I may use them!!!!!

Deb

[jes123]

'nuff said.

[steffi 001]

...is my attitude.Leastways I try to be,unless someone is blatantly rude.Then my oh my...I soon correct them.Thankfully there have only been two occasions when folk were totally obnoxious and that had nothing to do with PD.
I work on the assumption that if someone is speaking to you in the first place,chances are that it is either friend or relative,and in both cases,people who I am sure wouldn`t intend to hurt or cause offence.And my second assumption is that they don`t know about PD.After all,there are many neurological illnesses which I know zilch about so I think it unfair to expect the whole world to know about us and our lot in life.
If someone says something which at first appears shallow,or uncaring,I use my humour to make them feel better.Sorry to all you feisty folk,but that is my way.And I find it works better than an equally bruising reply to level the balance.But hey...I can get my hair off when required.
One Christmas eve day,in an exceptionally busy store,I froze mid aisle.Simply glued to the floor.Well this snooty lady dressed in tweed and navy stockings,rammed her trolley into the back of me and said in a "plumb in the mouth" booming voice;
"Can`t you moooove out of the way!!!!"
To which I counted to ten,then my head spun slowly round like
Linda Blair in the exorcist...and I locked eyes with her and said in a quiet steady voice;
"It`s lucky for you lady,that I`m a Christian or else I`d put your b****y lights out!"
There was a stunned silence for a moment,and then a round of applause.
Exit one red-faced stuck up tart and loads of offers of help for me.

See........I`m not the gentle soul you thought.

x:eek:

[BobT]

These people genuinely care and weren't around for the class on how to please the world. Why can't the response just be Thanks for caring. Ever been to a wake and said I'm sorry. For what? Be glad they care enough to ask. That means one or both of you havent abandoned each other BobT age 49, diag 98 here to thank the stupid Q;s

[vlhperry]

Today I went to see a neurologist recommended by my HMO close to my home. The 2 hour drive using the county/Metro disabled driving system (I am most grateful I live in an area that has one) as well as the two hour drive back home meant a full day for a 15 minute appointment. It was becoming way to exhausting.

When the new neurologist saw me today, he said for a person with Parkinson's for 17 years, I looked wonderful. I didn't feel wonderful. He also told me he felt unqualified to treat me in my advanced state and recommended a group of neurologist at a hospital nearby who would be more qualified. When my husband called them they said they could not treat patients with DBS surgery. So now I am back to square one.

I feel ready to turn of the DBS and stop taking meds and let myself die a natural death. I am so tired of coping with this disease.

Vicky

[Curious]

:hug: vicky.

my folks made that comment so many times about my dad.

[jacobs51angels]

A question that is asked of me often is...Are you not happy with life, I ask that because you never smile like you use to, so you must be sad because you have Parkinson's.
No s--- Sherlock...I'm happy as a clam...:rolleyes:

How do we share an understanding that regardless of the differences between us, We can still hold hands to comfort one another through all our hopes and fears, through births and deaths, all the happiness and unhappiness that comes into each of our lives. We can accept one another for our differences and still walk or wobble down the road, hand in hand.

Looks into mirror...I'm smiling:D :D :D ...man, forgot to put my teeth back in:eek:

Take care and SMILE:thud: :thud: Jacob

[ol'cs]

Well thank you! Of course I look good, and I feel wonderful, probably going to the races today. You wan't to know how to fake a disease and get all kinds of free cash from the government? Just say that you have PD, drag your foot a bit during the interview, then you are set for life.
Haw,haw, you can sucker those bleeding heart people at the disability office without even trying. Did you know that they pay my mortgage too, along with more food stamps than I can possibly use, and two grand a month spending money, free drugs, and a grant to take care of my home. It's all so easy:D :D :D .
They'll never say you look good again. Problem solved!:D :D :D

[BCinDC]

Your post made me so sad. There are definitely times when it's easier to think about giving up, but please don't. Keep fighting it. We're all fighting this. Every day. :grouphug:

[vlhperry]

Thank you for your kind remarks. The doctors have every reason not to want me as a patient. I am constantly challenging their suggestions and go to alot of extreme measures to show them that I am an individual with a disease and not some patient that can be slotted with a group of similiar patients and treated like a research project.

I think it challenges the doctor's athority and at my last appointment my doctor said I made her feel like an old fart. I can't stop being who I am but I don't want to make my doctor feel uncomfortable either. And the drive is so long. The DBS was needed but now I am finding out how hard it is to find a neurologist closer to home who can program the DBS. I can't say they didn't notify me before the surgery. I guess I will have to bite the bullet and make an appointment.

Vicky

[ol'cs]

I don't think that I would respect you if you weren't a kick @ss, down and dirty, tell'em like it is sort of person. I think that ALL who post here are of the same ilk. Yes, we must have an "attitude", be it mild or fierce. Mild is better, but fierce gets the worm.
I think that we all have terrible physical and emotional problems, and sometimes we want to just pack it in; but God didn't create it's children to feel this way, I think that even God makes mistakes too. WE are some of the mistakes of creation. Suffering is part of life, and though, myself, I wonder WHY is this so, and come up without a rational answer, I still take what's thown my way, much as ALL the others who post here.
No matter if one finds themselves down in the dumps, used, beaten down, or abandonded, there is some reason why we exist, no matter if we feel that it is cruel and perverse. I am almost certain that we PDer's who have so much of some things in common, will somehow communicate together in an afterlife with all other souls that exist now , have existed , and will exist. WE will know instantly of each of our lives and sufferings, and revel in the fact that it is over, finally. In geological time we are here for only a wink, so try to hold up for yourself, if not for anyone else. Personally, I think that witnessing anything that one deems beautiful in life is worth the pain and the horrible symptoms that we suffer. There may be a day when I can't take it anymore and even take my own life for want of final peace, but for now I feel that it's better being alive than dead, but i also realize that some are in the "too much to bear " phase and any decicions that they make concerning their continued existence are theirs and theirs alone.
However, for my sake and the sake of all the others who peridically "speak their peice" on this blogg, we would miss you (as we would each and every one of us) if you were to "pull the plug". And my words come from someone in the same position, not from somebody who is "feeling great", so please do "hang in there". cs

[pegleg]

It was good to see this thread revived - some of the comments here are what I am seeking for advocacy talks - I hope it's ok if I borrow a few.

You know, when you live with something like a chronic illness, we tend to become "immune" to what image we portray to others. what I mean is this:

I hav had people come up to me after a presentation and say something about my dyskinesia (which is especially exacerbated when under pressure.) More often than not, I reply with something like, "Oh it (dyskinesia) isn't all that bad." Then I see a video or picture capturing the "exorcist" head (as someone so appropriately described) and I am the one su rprised!

Other ways I show tale-tell signs of my dyskinesia - aka uncontrollable body movements, are these:
*my mascara usually blackens under my eyes where I squint (those football jocks have nothing on me!)
*my socks get twisted and the heel is forever on top of my foot!
*You DO NOT want to get me near any fine china!
*I get black and blue from bumping into things (little t hings - like car doors and walls, etc)

So I hope this giives you the picture. Most don't even know that dyskinesia is connected with PD. So I s uppose the stupid comment/question is iwhen someone who know abou PD asks, "Do you have trouble with d yskinesias?"

Response - plain and simple: "DUH!"

Peg

[paula_w]

Yesterday Jaye and I went into a yarn shop - Jaye crochets almost every waking moment and I went in because I knew they were going to offer us a glass of wine. As I sat at the table sipping and just watching everyone do this fine motor stitching around the table, I marveled at their patience and finger dexterity. That is, I did until my hand decided to whack my empty wine glass, knock it to the carpeted floor and caused it to break into pieces.

The lady said, "You proved me wrong. I thought those glasses couldn't be broken.

I left feeling........proud? nah just kidding.....felt like an idiot. But it's just par for the course.

Paula

[stevem53]

Something I just realized from reading this thread is, that just about every conversation I have with the people who know me, pd always gets brought up..and most of the time, not by me..And from those conversations I think everyone sees something different

[vlhperry]

You are so right. But maybe it is because our lives are so centered around our drug schedule and our on's and off's that others don't realize we have lives outside of PD. When we are introduced to new people, usually it is with the identifier of "he/she has had PD for (fill in the blank) years. They may forget your name but they rarely forget the disease. They mean well and I usually tell them I am fine and don't let it bother me. Most of the people I know I usually remember them by the musical instrument they play (spend to much time with musicians) rather than their name.

Vicky

[steffi 001]

We haven`t seen eye to eye...probably never will about some issues..but we all have a mask of sorts to hide the suffering until we can no longer wear it. I maybe come over as too flippant...you have a different mask,but the caring for your feelings and your pain is still there.
Vicky...last week I was leaping from rope to rope up in the trees feeling I could do anything.Folk didn`t believe I was ill.
The other night I was starving..managed to get out all the bits and pieces to make a sandwich..but then had to sit and stare at them ...totally unable to connect the butter with the bread, the filling fell into the mouth of my st.bernard ....and I sat and bawled like a baby...thinking that if THIS was IT...that IF I couldn`t even make a sandwich...when i was famished...WHAT indeed was the point.
I choose to let people in MY world ,think I am doing ok.You are the folk I share the reality with.And I have found it easier to cope that way.
None of those who saw me zip down a 470ft wire,from a height of 60 ft even anticipated that a few nights later..I had to sleep in my clothes cos I didn`t have the strength to get my jeans off and had problems climbing on a bed,2 ft off the ground.
Come on kiddo!!! It won`t always be this dark.
Hey...tonight me and my St bernard had a drooling competition.
Guess who won? Tut tut...that dog is such a poor loser...
:grouphug:

[BEMM]

PD very rarely becomes a subject of conversation with family or friends - or anybody. I may mention that I have it if I'm having obvious tremor, or when I need to be hauled out of chairs and sofas, but I really don't like to talk about it at all. I'm not ashamed or embarrassed, I just don't like to TALK about it. Talking about PD upsets me and makes me feel worse.
We are rather ancient, and at times probably a bit forbidding, my husband and I. When people ask how we are, I say I am fine, and my husband seconds that, assuring them that I am doing famously and amazingly well, and then he tells of the aches and pains he feels from age and wear and tear (not from a dreaded illness). He does this so charmingly that he saves me from all the PD questions and PD conversations that he knows I dread.
I am not educating anyone about PD, but it's my way of dealing with the illness. It is, after all, my ailment to deal with in the way that I can best, and it makes me feel stronger not to talk about it.

We are all different - almost - with different attitudes and different approaches to life and everything in it,

birte

[vlhperry]

When I was little, our family also had a sweet natured St. Bernard named Neil. I don't know if you remember an old sitcom called "Topper" but their was a ghost St Bernard in the show who had a habit lapping up alcoholic beverages and his name was Neil.

My parent's got tired of his drooling and my father gave him to his mother who left him tied out to a dog house all the time. The local kids teased him so much he became mean. He wouldn't let us near him when we would go to my grandmother's to visit.

I think the ups and downs of the disease is probably about the worst part. On your days the meds work like a charm you have hope of living a more painfree, normal life. But when the bad days hit, you hit bottom and feel there is no hope of being normal ever again. I guess we will just have to learn to figure out a new meaning for what normal truly is.

Vicky