what's bad about PD????: I sometime wonder... - Cure Parkinson's

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what's bad about PD????

Antonio_Montolio profile image
15 Replies

I sometime wonder. Why is it that I care so much what people thinks about me? Half of the time they don’t know I have Parkinson. Much of the time what judgment they've pass or expressed, it’s base on ignorance. Quoting Plato “Opinion is the medium between knowledge and ignorance.” Once I was traveling in an airplane, as we were getting ready to deplane, a lady in the front row looked at me, and uttered. “WHAT DRUGS ARE YOU TAKING” Because I was trembling like a leaf. My meds at that time was wearing off. She sounded so ignorant that everybody just looked at me sympathetic and in total disbelieved.

Never the less that did not stop me from feeling miserable, embarrass and just plain bad. I've always said that Parkinson will not kill me, but it’s very disabling. I can get used to the disabling part; I can adjust dosages, change pills. But not what person thinks. So what’s bad about PD? What people think, this we can’t change.

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Antonio_Montolio profile image
Antonio_Montolio
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15 Replies
jazzfan53 profile image
jazzfan53

Sometimes I think the worst thing about PD is the huge varieties of symptoms. Plus all the "secondary" symptoms - depression, loss of sense of smell & taste, muscle pain, neurogenic bladder, loss of stamina, apathy....the list goes on and on. Never mind the "primary symptoms" of tremor, stiffness, dyskenesia, dystonia, etc. !

jazzfan53 profile image
jazzfan53 in reply tojazzfan53

Forgot to mention (no pun intended) the cognitive memory impairment.

Antonio_Montolio profile image
Antonio_Montolio in reply tojazzfan53

none taken,, but we all have our own private hell to deal with,, my is the social fobia. I can some way or another deal with all the symptoms you have outline.

but not with social fears,,that's my Achilles heel. I should know, 12 year dealing with PD, 20+ being Bipolar, double whammy Sir,, and thank you.

Antonio_Montolio profile image
Antonio_Montolio in reply toAntonio_Montolio

AH! I forgot to mention, PTSD, this from being a Marine, Sir.

Antonio_Montolio profile image
Antonio_Montolio in reply toAntonio_Montolio

Triple whammy!!!

Norma55 profile image
Norma55 in reply toAntonio_Montolio

I too am bipolar and taking multiple meds for it and PD. do you have any suggestions on what combinations can help or maybe hurt this "monster dual diagnosis"?

Antonio_Montolio profile image
Antonio_Montolio in reply toNorma55

Hi Norma.. the best combo in bipolar meds for me, are QUETIAPINE FUMARATE 200 MG and LITHIUM 600MG. I'm able to sleep much and function much better.. that and a good support system .. family and clinical. I call it the wonder pills.

Jerebet profile image
Jerebet

If I would have had that comment directed at me I would have said "I'm on Parkinson's drugs my dear lady. What a pity for you that there are no drugs to address stupidity."

If I'm traveling I let my PD flag fly. I wear a Parkinson's tee shirt and warn my seat mates that my left side may shake a bit. My philosophy is to tell them before they comment to me.No one has ever changed seats and someone always helps me with my bags and shows disembarking courtesy. It also results in me having the chance to educate people.

Antonio_Montolio profile image
Antonio_Montolio in reply toJerebet

Thank you Jerebet

I guess I’m not that quick firing back at stupid remark. But what I have taken to do as much as possible is to tell any one next or near me that I have Parkinson

Paul_Dineen profile image
Paul_Dineen

I've been lucky when it comes to this. Same thing with our son. We adopted him from Korea, so he doesn't look like this Caucasian parents. But, we've never heard a stupid or rude comment about that. He's a HS junior, so I assume he took some guff in Jr high and HS about being different, but apparently nothing major.

Re PD: there was a stretch of ~1 month when I was completely unmedicated for PD as part of changing to a different neurologist. So, I went from having a limp to needing a cane to briefly needing a (borrowed) wheelchair. Fortunately, there were no annoying comments or looks during that span -- people were very polite and helpful: holding doors for me, sometimes asking if I was ok in appropriate/helpful way. I went out to dinner with a friend during that time and mentioned this to her; she said that's a lot like being a woman. I think there's just a small percentage of people who don't have the sense to not be rude and unthinking, and Antonio just had the bad luck of crossing paths with one of them.

That said, I wonder if her question was a well intentioned attempt at small-talk (sounds like she knew something about the condition and treatment), but she picked a poor circumstance to ask the question.

Antonio_Montolio profile image
Antonio_Montolio in reply toPaul_Dineen

Thank you Sir.

FrankBerson profile image
FrankBerson

I am new to this board. I find it answers questions I can not get at any other board.. ie chronic.constipation.

Antonio_Montolio profile image
Antonio_Montolio in reply toFrankBerson

HI Frank wellcome

FrankBerson profile image
FrankBerson

Happy Thanksgiving to all.

Frank

FrankBerson profile image
FrankBerson

I find that stationary recumbant bike once a day reduces my PD symptoms.

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