Answer Summary
Members connected over the shared frustration of feeling like their Parkinson's medication isn't working some days, with many confirming this... Read more
@A MyParkinsonsTeam Member, The best of us have multiple typos. It's Parkinson's signature. Just give credit where credit is due. If you want to edit your post, go to the three little dots immediately below your post. You should find an opportunity to edit, but know that all of us understand.
That is an unfortunate reality and it causes tremendous anxiety. I fear that the disease is progressing and I must actively fight those fears by proving to myself that I am still me, doing the things that are meaningful to myself and others.
Some days I swear that it's not working , the medication I mean , and other days I can miss one dose , and I can feel it . I think it has a lot to do with what's going on in your life . I can tell you that stress and anxiety are not our friends . I can also tell you that I stopped taking my medications for a couple of weeks and the outcome was not good . I know that the medicine Carbidopa / Levodopa is not the greatest thing to take , but it's the only thing we really have for Parkinson disease at this point . Did anyone ever read the beginning of Parkinson , it's a pretty scary story , Dr Parkinson used to follow people around that had the shaking disease , and the first treatments were burning the back of your neck and blood letting , can you say ouch . Remember to pray 🙏 and too keep fighting , cause we're all in this together ...
@A MyParkinsonsTeam Member, I gave up my driver's license the last part of June rather than trying to convince people that I can still drive safely since it would expire on my birthday, July 7th. I know that I did the right thing, but in my dreams lately, no one believes my diagnosis. I keep dreaming that people are giving me all kinds of responsibilities like dropping off a half dozen kids to watch or giving me packages to deliver across town or out of state. Of course I fail miserably. I'm not in denial, but I wake up feeling useless and discouraged.
I had that type of dream last night, but I told God that I knew that my flesh and Satan were lying to me. I woke up before the alarm. I'm too tired for details now, but I had a great day! Goodnight my friends 🧡!
I definitely have this feeling / doubt in my mind. Some days, I wonder whether the cocktail of drugs that I now take was ever really needed; and, in particular, whether the meds that I take to deal with various aspects of Parkinson's (Co-beneldopa, Rasagiline, Opicapone, Clonazepam, Pregabalin, Solifenacin ... ) have ever done any good at all ...
I guess that this really means that I'm doubting whether the initial diagnosis that I have Parkinson's was correct, and I find myself wondering what would happen if I stopped taking the meds altogether ... Of course, I would never do this unilaterally, without medical supervision, but it's something that I periodically discuss with the Parkinson's nurse or the Consultant ...
I think that, at its root, this must mean that (at some level) I'm in denial about the reality of Parkinson's in my life ... which is crazy, given the clear symptoms of Parkinson's that I now have ...
I'd be interested to know whether other people share my doubts about diagnosis, and how widespread this delusion might be.