Everyone knows about placebo; You take a medication and feel better but the medication is a sugar pill. Nocebo is the opposite side of the coin; I feel worse after a trip to the doctor.
I feel worse because he asks whether I have stiffness or bradykinesia or balance problems or tremor or constipation or loss of libido or low blood pressure.
And I go home and worry about all of the above.
I stop a moment before climbing steps to my front door. Does that mean I'm getting the freezing problem like the Robin Williams movie? I take a moment to steady myself before standing up. Does that mean my blood pressure is low? When I extend both hands my left is "twitchy" but you have to look close to see it. I can touch the tip of my nose with either index finger. Or thumbs or FU finger or ring finger or pinkie finger.
I can stand on one leg for 90 seconds. I don't fall or trip while walking anywhere. I spend a lot of time on the treadmill; I do an HIIT workout three times a week.
Okay fine, I failed the DAT Scan. But I seem to do well even if low on dopamine.
I whine a lot about this. But I was Dx'd with MS then APS then a DVT then BPH then benign tumors in my liver then PD. I seem to have gotten over all of them but for the PD.
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kaypeeoh
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This is profound. I have the same issue. My symptoms always get worse after going to the MDS. Last time he said my symptoms were slightly better, but wanted to up my meds due to cogwheeling. Sure enough, I started cogwheeling more. Not sure what solution is. I feel like you can reverse some symptoms if you think you can Being told you can't, especially by a doctor, really sets you back.
I totally agree. I’ve started blaming every little thing on PD. I wasn’t a hypochondriac previously. I’ve recently started to question my cognitive abilities, but I suspect I’m just losing concentration because I’m overthinking an unknowable future. Given up on meditation & going for a pint with PD would be madness. Music is a relief. Where’s Mr Spock when you need him?
Why do you write: "going for a pint with PD would be madness"?
Even if you found some solid evidence that small amounts of alcohol are best avoided if you have PD, or that alcohol affects your medication, the wider picture may be different. If the alternative to having a drink with your mates at the pub is, say, that you go for a 5 mile walk, then I suspect that alcohol is best avoided. But, on the other hand, if the alternative is that you spend hours staring at the wall, then I would suggest that going with your mates to the pub is better.
You’re right. What I wrote was was inaccurate & wrong, so I’ll apologise & correct my sentence. Going for a pint with PD would be madness for me (not for everybody), because up until 3/8/22 I was habitually drinking too much, I found it difficult to stop & don’t want to start again.
But, yes, reading it back, the sentence I wrote was bad & I’m glad you corrected me.
I've read that small amounts of alcohol is healthier than complete abstinence. I have one beer in the evenings. I don't much care for beer , especially in winter, but believe it can help if not overdone.
wow. You have some strong self discipline . I get what you mean. My doc doesn’t even come out and give me a diagnosis for fear of scaring me. I think there is a happy medium. In the end much depends on how we manage our own self and you seem to be doing a great job.
I un-subbed from several PD groups because listening to others talk SO negatively about their symptoms made me worried and fearful, which made my symptoms worse.
I agree but prefer to fight small battles. I carry small bits of dirt in on my shoes. I know the dirt is there but can't see it. I sweep the floor and see all the dirt collected in the dustbin even though I never saw it on the floor.
So it's been 11 months since I wrote the OP. Nothing has changed in that time. No worse, no better.
I've gotten used to the idea of being at death's door. Although people with PD die with PD but of from PD. I always found that statement sarcastic not prophetic.
11 months ago I planned my bucket list; Things I wanted to do before I died. But since I'm not dead I guess it doesn't matter that I haven't done anything on my bucket list. I haven't learned Spanish, I haven't run any marathons, I haven't cycled across New England.
Maybe I won't die of PD. So I get to look forward to Stroke or Heart Attack or Diabetes, the usual suspects in my family tree.
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