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'Odd' Feeling

A MyParkinsonsTeam Member asked a question 💭
Olive Branch, MS

Now to the 64 million dollar question. I'm dreading to read your answers, in a way.

Do you feel 'odd' all the time? I'm talking about a slightly confused(?) feeling with a good underpinning of anxiety? I can't explain it better than that. Some days are better than others but that feeling is pretty constant. The new medication did not help, it made it worse, which is one of the reasons I'm getting off of it.

If i don't get a lot of yeses in response to this question, I'm going to assume… read more

September 21, 2023 (edited)
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A MyParkinsonsTeam Member

I believe that brain fog and feeling odd are separate afflictions. I have both, and they are closely related, they have distinct, and important, differences.

You can look up brain fog and get plenty of accurate information. I didn’t have any success finding any information feeling odd.

Brain fog is just what it sounds like. When it’s foggy you can’t see clearly. When you have brain fog you can’t think clearly. You can’t put your thoughts together, because you can’t find them.

Your brain is slow and fuzzy.

Feeling odd is like being relegated to the back of your brain. You are no longer in charge. You’re just a spectator in your own brain.

This is just how I feel.

September 22, 2023
A MyParkinsonsTeam Member

Feeling Odd is part of being me now! I get the sensation of floating and being disconnected to the immediate world around me. At times this can even be part of being unable to focus on what I am doing. When this happens now I try to take a short nap 10 minutes or longer, Sort of the solution to an unresponsive laptop. A quick reboot and leave the mind/computer off. Afterwards I listen to classic music to let the waves of confusion calm down. For now it Works!

September 21, 2023
A MyParkinsonsTeam Member

Merrill’s. I have anxiety that worsened after getting PD. I have to take Colozapam 2 pills at night for REM Sleep Behavior Disorder & when my anxiety got worse he told me to take 1/2 am & afternoon & I need to take a whole one. If I feel like a Panic Attack seems to be starting to take 2. Anxiety seems to be constant, & worse at times for no reason. I get confused a lot & upset easily. I can’t do phone calls when there is a problem I get so upset & nervous & confused then so embarrassed, my stomach gets a knot & I sweat . Wears me out, I now get Jerry to do these kind if he’s here. I will be ok & out of the blue I feel horrible I mean horrible . My husband can see it on my face. I couldn’t follow the Neuro’s instructions on the phone & Jerry took the phone.
Talk to your doctor it’s possible the new higher Levodopa dose is too much & causing vomiting. Call him soon don’t be miserable & sick & wait. You take care of you.
Let us know I will be concerned about you. Miserable disease.
Love you,
Carol 💕✝️

October 16, 2023
A MyParkinsonsTeam Member

I know the odd feeling. But I generally have it when I really feel my PD you know (not pain or symptoms but a constant consciousness of having PD. I’m doing well. Not many complaints and I can feel happy but PD is always in back of my mind. But heightened when Out or around a lot of people. Diagnosed 2020

September 24, 2023
A MyParkinsonsTeam Member

Thank you for sharing your thoughts David. I agree with your thinking completely. I tracked these foggy moments and for me, they tie back to stress and anxiety. Without meditation and a focused desire to not give up to something that is poorly defined, with no clear way to diagnose, no specified treatment except medication with challenges in timing and dosing and no cure used to paralyze me. I have mostly backed off my negative response to this reality in a variety of ways but when new symptoms present themselves or previous symptoms worsen, that fear, anxiety and anger surges and so do the doggy moments.

This sounds selfish but I decided I needed to reduce time spent angry, afraid and being a victim so I began focusing my time on how I could improve my time on this planet. I've had some success but I think, more importantly. I retrained my mind to stop thinking about the hopeless changes happening to me to thinking about what would happen if I exercised, meditated, timed my medicine better, paid attention to my gut health, etc. I still am on occasion overwhelmed with PD issues and the fact that I never saw this coming and had no plan to spend my retirement in a box called PD. But as I fall into these moments I put on the brakes and/or seek support to stop the drop and jump into problem solving and process improvement and throw everything I can muster into reducing the negative impact of all things PD.
I'm no hero but I won't be a victim either. I have PD but I still have some choices so here I am today. I'll deal with tomorrow and possible brain fog when I get there.
How do you address your days and what they bring? I see meditation is part of your formula. Are there other ways as well?
Maria

September 24, 2023

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