Do they know how long they have had their ... - PSP Association

PSP Association

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Do they know how long they have had their disease

6 Replies

Amount of time,is it understood by the person with psp or CBD

I was having a crappie time,just over tired and barked at my husband dose you know how long we have been dealing with this unrelentless disease.He had a look of bewilderment and said no.

I'm going to follow-up with this in the morning.Not that it changes anything.

Dee

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6 Replies

Tried to edit any mistakes, what a pain,things have changed and not to the better on this site

easterncedar profile image
easterncedar

Dee, you were here when I arrived, so I know you and your husband have been fighting this very close to forever. It's exhausting. This disease is so hard to get a grasp of, it effects everyone so uniquely. Some folks develop dementia and memory problems from a little to complete loss of self, and for some the effects seem entirely physical. I know I'm not telling you anything new!

Before we had any idea that there was anything wrong except for his foot dragging, I used to tease my guy about how his sense of time was so imprecise. He'd tell me something happened "ten years ago, no, five, no it must have been seven, oh, it was three" . I thought it was an interesting quirk. It was only years later that I saw it as an early symptom, and by then I'd missed my chance to ask him for more stories. They were gone.

Dadshelper profile image
Dadshelper

Dad seemed to lose track of time easily, especially as he progressed. His long term memory of events was almost perfect according to his older sister. I know during the day when he'd be watching TV and I asked him what he wanted for lunch he'd usually be surprised that many hours had passed since he had breakfast.

Ron

Ettavb profile image
Ettavb in reply to Dadshelper

Miscalculation of the current time, amount of time passing (hour, day, month) is present for mom as well, though her recollection of time and sequencing of events from long ago are still excellent.

Whenever a new healthcare professional comes along ,they often miss this because the questions they ask for neurological competency are based on things in the past. She usually gets the year right and the current political figures, so they don’t seem to think or realize she has a problem with current time and sequencing of events.

Drjazz profile image
Drjazz

I have CBD and one of the things I have noticed lately is that my sense of time is defective. My brain is slowing down, so everything around me is speeding up. I remember things in the far past, but I have trouble remembering what happened yesterday, or things I thought happened yesterday were really from last week.

SewBears profile image
SewBears in reply to Drjazz

Drjazz, I’m impressed that you can articulate your thoughts so well and also be able to voice your thoughts on this forum. Bravo! I’m so sorry you have CBD. If you’re up for it I would find it interesting to hear more about what else you notice about CBD. Not everyone can voice their journey and maybe it could help us caregivers to have a better understanding coming from someone who is experiencing it? I feel like my husband is sliding into a deeper decline but I can’t put my finger on one particular symptom that is making me feel this way 🤷‍♀️

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