Parkinson's Movement
13,286 members11,867 posts

Middle Ground

I absolutely hate it when someone is told I have PD and they act like I might die next week, you know the "OMG I'm soooooooooooooooooo sorry". I also absolutely hate it when someone is told I have PD and they say something like that's no big deal these days "Just take your meds and you won't even know it". I get the 'no big deal' reaction more than the other. Once again it shows we can't understand what something is like until we live it.

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The second reaction that it's no big deal, is promoted by big Pharma when big Pharma is advertising on Primetime TV and minimizing diseases that is what happens just take this pill and you're going to be better than ever before even before you had it.

Did anybody read this somewhere, I have ,prison was trying to eradicate hep C I believe the prison was in Indiana it costs $40,000 for course of harvoni.

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Not right that certain conditions get the hurry -up treatment or vaccine and the age old are left to be

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Or when they treat you differently than they used to or begin excluding you from things

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Or you just happen to say something about a symptom you're experiencing, like fatigue or pain, and the person says "I have that too, that's just old age" but you know it's because of the PD. (And I've been getting that comment since I was 50).

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OH you are so right laglag!

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I understand your reaction, I have had similar. People's only reference points are M. J. Fox and M. Ali. When first diagnosed I told quite a few people but now I don't bother as they don't understand it anyway and it takes too long to explain. Even most general doctors don't know much about it so we can't expect others to be well informed. Come to that many neurologists are ignorant about many things related to pd. One recently told a friend with pd that she knew too much and should take one day at a time - blissful ignorance type of thing. There are people in this group that know more.

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My neurologist thinks that pain is not a symptom of PD.

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wrong, wrong, wrong

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BAH! When I was assessed for the Rock Steady Boxing program, the nurse doing the assessments said pain has been the No. 1 complaint of everyone who has entered the program!

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My sister asked me what was on my bucket list!

I don't tell people or talk about it anymore!

That's why I love this site.

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I hear you Astra7. I seldom say anything now.

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Slightly aside, my GP had never heard of azilect.

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OMG! Maybe he knows it as rasagiline.

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My own doctor at first said Parkinson's is not so bad, there are many worse things. Then on a later visit said "you do know you have a chronic degenerative illness'. I am giving up on him.

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Not to make lite of the situation but we are all suffering from a chronic degenerative illness, its called age. I went to my grandfathers memorial yesterday, you can say he died of cancer but I like to think of it as dying of being 92 years old.

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Yes I've had both reactions.

But the most honest reaction is when you don't tell anyone and they ask if you need help.

This shows me I have got something wrong with me. MH

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The best thing that came out of Parkinson's is that car sticker for handicapped parking I just very recently got it and I am using it.

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Amen to that! That has changed my life for the better!

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Handicap parking?

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Don't get me started! Oh well, it's too late. I dislike being "diagnosed for behavior others get a pass on.

I dislike my family seeing a small symptom and projecting it to predict some totally unrelated disaster.

I reject the thought that it is an immediate death sentence. It may be degenerative and incurable but you can fight back. See rocksteadyboxing.org

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You and spouse will meet a friend or couple in the market with normal casual greetings but when directed to me its accompanied with that condescending change in tone and slight head tilt, "How are you doing", slight eye contact and momentary pause to make one believe they really want an answer....... I HATE IT.

I usually muster up and say with a smile in my best pre PD imitation "Great, doing just great,You?"

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I have had the same. Sometimes I say "still got it!".

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No one knows or empathise the suffering of another person and that is why I now opted to be the one that says: "NO BIG DEAL", "thanks to God and my neurologist I'm thriving", and drop it at that, no farther explanation needed just change topic of conversation, people will not understand.

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Oh yeah I understand it's like if people find out. That I'm epileptic once. They know the y look at you as if you are a weirdo when you have a zest ire because they think you should be in hospital

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This is why I love this site. Nobody is going to get it right, as far as I'm concerned. I've got friends who watch me closely and then asked me when I was diagnosed. I've got family members, who if I mention a symptom tell me they have the same thing. I, like many of you simply don't talk about it anymore. Let's face it, it's hard to describe a lot of the symptoms of PD even to people who have PD. But we at least understand that. Thank goodness we have each other!

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Quite agree with all these comments - I love the friends who get it and just quietly help when I'm having a problem with, for instance, lacing up my shoes when we go walking together. I don't need sympathy nor admiration- just support when I ask for it.

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YAH!

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