PSP Association

Not able to remember pleasure??

My husband seems in recent years to have lost the ability to remember pleasure/ happy times- this is getting much worse in recent months - is this PSP??

We can have a lovely time with family or couple of weeks ago a lovely sunny afternoon in Wisley Gardens. During the outing or social occasions he can appear to enjoy himself - though mask like features means I always ask rather than assume. Yet without fail the following day he will say he hated the outing/ event, hadn’t enjoyed it at all. He took a recent short break with his brother, I spoke every day and saw lots of photos all seemed well. Yet he now says he felt like a ‘caged rat’ and never wants to go back.

I am at a loss, I show him the photos and try to reflect on the lovely event/ outing but he gets very angry and denies the pleasure. Inevitably I try to shield friends and family members who would be do so hurt.

I find it upsetting too any ideas any ideas??

Tippy

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Tippy I don't know for sure but would think it is related to PSP. If you think about it apathy is one of the symptoms? So if he feels that way then it might follow that he doesn't enjoy things? Or if he does he can't be bothered thinking about happy things the following day? Don't know if that makes sense but although my husband never said he didn't enjoy things he never seemed very happy. I just accepted this was how he was due to PSP.

Oddly when he was dying he was more affectionate than he had been for about 12 months. So I think it's this thing about everyone being different? Some have symptoms that others never have.

Sorry I can't tell you for sure that it's PSP but it seems like it might well be?

Marie x

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Strange. Is his anger a diversion for some memory loss going on????

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That's a sad and difficult situation for you, Tippy. PSP affects people so variously, it is hard to know what is going on. There is a symptom of dementia called anhedonia, which just means an inability to experience pleasure, but it sounds as if he might have been happy but isn't happy to recall the experience. So is the negativity a choice? An attitude? A symptom of depression? A cover for a failing memory? If depression is the cause (and anger is often a symptom of depression) it may be worth talking to his doctor about treatment. It may be that you have to accept that he is going through a truly hellish experience and all you can do is a rear guard distraction, but antidepressants may be an option..

Hang on. Peace and hugs, ec

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Thank you he has been on a variety of antidepressants since diagnosis . We have discussed this problem of not remembering pleasure with his Psychiatrist previously without suggestions from them.

Have never heard of Anhefonia - so that is interesting - than you

Tippy xxx

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Antidepressants are tricky to get right, of course. I would at least raise the issue again...or can he express himself enough to tolerate counseling? My guy had a couple of valuable sessions before things became too hard for him, and I think they helped.

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Thank you luckily we have a Neuro Psychiatry appt in two weeks. He has seen hosp counsellor before. and a good reminder from you to try this again

Thank you so much. The kindness and care on this site is wonderful helping us through these PSP challenges

Tippy xxxx

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Yes Tippy, I'm sure it's the PSP. My husband was the same. I wonder if it is that he can't experience something in the way he used to and therefore the recollection is disappointing. It is hard to deal with when you have put a lot of effort into an outing which you hoped would give him pleasure.

Vicki

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Thank you - yes the experience has changed hugely for him he can no longer project his voice and has difficulty finding words to contribute.

Xxx

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Hi Tippyleaf,

Socialization is important:

Almost every evening, social activity: cinema, city walk, show, museum, conference, visit grandchildren, snack with friends, etc. After that he needs to take a rest. It is advisable to have holidays in places where the moderate climate allows you to go out on the street and do walks-gymnastics as well as socialize. The transport by car is adapted to take the patient and the wheelchair. Similar Citroen Picasso tall seats are recommended.

The difficulty to follow the rhythm of a normal conversation, being treated as a child or being the object of attention for his illness and not for the person who is locked inside that jail that is the PSP, produces feelings of frustration and humiliation. You have to try to avoid those situations but keep attending social events because although usually resisting to get out of the routine at the end the person wiyh PSP have normally very good times.

In the event that the food is difficult to handle (spaghetti, salad, etc.) or it is a meal in a restaurant with people who are NOT from the family (former colleagues of university, etc.) and where the restaurant marks the rhythm when serving the meals, it is very likely that the person with PSP needs help to eat and thus not delay the rest too much. This can create feelings of humiliation. In the future we will try to select the type of food and attend meals in which the rhythm of the meals is very flexible.

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I'm going to call you Dr. Rodicio!!!! Thank you for all of your insight and information!!!!!!! Alicia Q.

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Thank you.

Hugs.

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