This past weekend we went to my spouse’s younger brothers house. For dinner we sat around the table and just chatted while the kids were in the basement playing.
When we were on our way home he was in a really bad mood. He said, “I’m not even there. I’m not a part of it. I can’t join the conversation.”
He sat at that table looking at everyone, without really looking at them. It was like he was staring at something beyond them. And he only said 1 sentence.
Then in the car, he wasn’t looking at me. He holds entire conversations without actually using his eyes.
I’m wondering what this is. It’s becoming more frequent. He sits there and appears to be sleeping, but he’s awake. Or, he’ll look at his phone to text but then not actually see what he’s typing.
Anyone else have this?
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I can only guess what's going on, based on my own subjective experiences. They are probably milder than your husband's but may give a valid clue. Two factors seem to be at play: intellectual and energetic.
On the one hand, he has resentment embodied in a "poor me" attitude, with thoughts of self-pity, and anger at the world. What makes this worse is he desires to blame God/nature/the world for his illness, but knows there is no one to blame. At some level, he knows he's acting crappy and unlovable so this adds to the miasma of his bad feelings. His mind is stuck in a negative loop with a stream of thoughts like "I feel lousy . . . why doesn't anybody help me? . . . doesn't anybody care? . . . they don't give a damn . . ."
On the other hand, PD is probably reducing his energy/ability for a) shifting, and/or b) focusing his eyes. It is physically more demanding for him to turn his head or eyes and/or focus them on someone else. I experienced this in my first months with PD: i would drive into an intersection without checking right and left for oncoming cars. I knew this was quite risky, and I had some close calls, but it was easier for me not to turn my head or my eyes (and just HOPE that there would be no close encounters!) Even when I did bother to turn my head, bodily stiffness or slower cognitive processing may have rendered my responses too slow for safety.
If your husband has good introspective ability--and is willing to converse in a calm, unangry way--you might bounce this last paragraph off him and see if he can confirm these optical limitations. Your solicitude should make him feel less alone and ignored.
Yes, my eyes always looed like I was asleep. I went to a. Eye surgeon & he measured my lids & set me up for a. Eye lift immediately. It was covered by my
Medicare Insurance. I can now look people in the eye when speaking with them. It has made a great difference in my life .I look awake & interested in what they have to say.
Good luck.. Seeing better too & a bonus Lots of compliments ony eyes !
Does he have dyskinesia or feel like people are noticing his symtoms. That could make him feel self conscious and as though they treat him differently then they used to. He may be quiet not wanting to draw attention to himself.
Just to add when people you’ve known for a long time notice your symptoms and that you aren’t the “old” you those of us that have PD can see it in their eyes, in their faces. He may have started avoiding looking people straight in the eyes because of this and it may be just a bad habit that you need to just say kindly.. I don’t know if you even realize but I notice sometimes in conversation that your not looking at the person you’re talking to. Not sure what the texting part could be
Used to cause big disagreements with my wife that I was ‘not in the room’. With me it was anxiety mixed with mental fatigue and feeling doped from the Sinemet.
I started the B1 thiamine regime and for months felt great. It has sadly lessened off quite a bit energy wise from its peak but being ‘in the room’ along with no daily leg cramps and not feeling doped are my main 3 benefits of thiamine. I have also been able to increase the L/C as I tolerate it better.
Still get anxiety but can overcome that better by not being mentally exhausted all the time.
Dr. Costantini and Dr. Colangelli are both very clear that a loss or reversal of symptom improvements is almost always an indication that the dose needs adjusting. Contact him and describe your situation if you haven't already. He will work with you to get the dose right! Please don't settle for less if you don't have to!
There is a decline in Executive function with PD. Their thought processes move more slowly than normal. What used to come naturally, becomes slower and harder. They have "to think" what to do or say next. My husband started having trouble following movies and TV shows. He could not respond quickly in group conversations and did better in one to one encounters. The PD mask also makes it look like they aren't listening. I used to have arguments with him because I was discussing something serious and he acted as though I weren't even in the room. Learn as much as you can about PD. Not everyone has the same issues but being prepared for what could occur can minimize frustration for both of you. Try going to Parkinson.org for free educational material.
Good thread thanks for starting it and all contributors
I can relate to his experience... after a lot of thought about what happens to me personally I cannot multitask like i used to be able to and my energy can be too low to follow and respond to conversations. its like i don't have enough oxygen getting to my brain. If you are having a conversation there is a lot of processing going on that takes multitasking/executive function and energy. A comparison for someone w/o pd might be to imagine you are sitting in a room with others but you are in a deep sleep. Someone suddenly wakes you up and everyone is carrying on a lively conversation. Until your executive function comes on board it is difficult to process the conversation. If someone starts asking you questions you may not be able to answer and may even become flustered. The difference here between you and someone with pd is you know your brain will kick in soon. With pd you don’t have these assurances and it can cause you to become nervous and self consciousness. That exacerbates the problem. I personally find the more people there are the worse it gets. Usually I do ok 1 on 1.
I had a similar problem nobody thought I was looking at them and they thought I was sleeping. I decided to go for an eye lift. That solve my problem. My eyes are open now. I'm a much much happier person.! It's worth looking into this. Now I'm changing my name to Sunny side up!
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When did you tell your adult children?
Do you think we should be donating blood?
The Marty Feldman look 😛
How do you know when to go to emergency when PD symptoms are beyond erratic? 
