Questions about cognitive changes and exhaustion

[Leilani23]

Hi, everyone,

I've been concerned about some changes I've noticed in my mental processes lately. I am 67, was diagnosed last August, and am not on any medications. My primary symptoms are jaw tremors, constipation, severe exhaustion, memory problems, and I can't remember what all else.

(1) Are these normal cognitive changes with Parkinson's?

I sometimes just say something off the top of my head that makes sense but doesn't reflect at all my former level of understanding. It's like a lack of thinking before speaking. It surprises people who know me well. Sometimes the comment is a little bizarre. After these things happen, I have the feeling "This isn't me" saying these things. I know I'm changing, and it really worries me. I was NOT like this before.

I get confused easily.

I act without thinking sometimes, to my detriment.

(2) Is this normal for PD? After I have a bad bout of jaw tremors that really hurts my whole face and makes my head jerk too, I experience a quite heavy fatigue that lasts for about 20-30 minutes. I feel really out of it and don't talk or move. It reminds me of what I've seen happen to people with epilepsy after they have a seizure (the post-ichtal phase - I don't know how to spell that anymore).

(3) Is this typical of PD? Extreme fatigue. I can't ever tell what the day will be like. I wake up and am absolutely wiped out the whole day, need to lie in bed and read and can't get anything done at all. I feel so deeply fatigued so often. I'm early into the diagnosis and didn't expect this now.

Thank you for sharing your thoughts and experiences with me. I'm particularly concerned about the cognitive/thinking changes.

Leilani

[honeycombe3]

Hi Leilani,

I am 66 years, live in UK & have been dxd for 10+ years (see my biog). The cognitive & non-motor aspects of PD have always been a major concern alongside pain & fatigue. I wonder how you came to be dxd? Did you have any scans? What were your reasons for being referred to a specialist & what type of consultant did/do you see? So many questions & just 1 more: why are you not being treated?

In answer to some of your questions from my own experience: PD does cause chronic fatigue (especially in early days), constipation (for me last 2 yrs), tremor (left side only, from the start, becoming more pronounced), cognitive issues & memory lapses. More recently I also started to have freezing episodes. It is important to keep a check on those non- motor symptoms which influence our ability to feel in control because not feeling in control = PANIC. Panic is extreme stress which makes everything else 100 times worse, so please get some specialist medical advice asap. Whatever it takes to treat depression (very common in PD) & then other symptoms as they occur. Having experienced all your symptoms to some degree I know they can be treated but you need expert advice. You will get lots of excellent support from fellow PwPs on this site please use it to enhance professional intervention.

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(2) Is this normal for PD? After I have a bad bout of jaw tremors that really hurts my whole face and makes my head jerk too,....

See 1:08-1:15 of the following video. Maybe not Parkinsons.

youtube.com/watch?v=pf6BGBl...(Not working as expected?)

(1) Are these normal cognitive changes with Parkinson's?

I was dx two years ago. Not on meds. I see cognitive issues but no where near what you describe.

[cybersue]

I have exactly the same symptoms at times. My teeth, face, and behind my eyes hurt so much I don't know what to do with myself. The only relief I get is to go to bed. I have trouble concentrating speaking,etc. I have found that this usually happens when I have done too much. Rest is so important . I need to remind myself. I do have seizures and these episodes are different . It was difficult to differentiate but with the help of my drs I can tell the difference. I know this doesn't help but wanted you to know to know you are not alone. It is so important to listen to our bodies. Not easy when you want to keep moving. Good luck.

[Leilani23 in reply to cybersue]

Thank you, Cybersue. It really does help to know you're not alone. My husband is always trying to get me to plan ahead so I don't do too much and then have to spend the whole day or even 2 days in bed. It helps so much to lie down. Do you have the seizures from the PD? Best wishes to you, and thanks for your message.

Leilani

[cybersue]

Yes Leilani, my seizures are from my PD. My husband and daughters frequently remind me to pace myself and rest. We need those reminders. Yesterday I tried golfing with disastrous results. I. Don't about you but I can usually tell. In the morning what kind of day I am going to have. Here to the good days.