I have noticed in this last week Brian has slept more and is just so quiet. I know he is normally quite and withdrawn but it seems so much more this week.
Nothing seems to get a reaction out of him at the moment no frustration no joy nothing. He just sits there with a hound dog expression like a child that has had his sweets taken away.
It's got so bad i feel like shaking him and saying snap out of it smile for god sake all things i know he can't do. Janexx
Jane, sounds as if a trip to the doctors is required! Might be just feeling a bit low. But better be safe than sorry!
Lots of love
Heady
Thank heavens my guy still loves his sweets. I can generally get him to smile with a treat of some kind. And he is very good at giving and receiving hugs, which helps us both when one of us is down.
Today, because he was feeling low, I looked up and found one of his old friends from his working days. He had moved south 15 years ago and they hadn't spoken in years. I took a chance and called him, and they were able to have a bit of a chat, although the friend asked to speak to me at the end so I could tell him what was the matter. Anyway, it woke up some good memories for my guy and he was cheered. They had had some amazing adventures in the day, working to help endangered animals overseas, lots to be proud of.
So I got one thing right today.
On we go. Hugs to you and Brian, Jane.
Easterncedar
What a good idea Easterncedar, B won't talk on the phone but to his family. and only for a few minutes....I am glad that Brian had an enjoyable time....what a neat thing he and his friend did......gives you good feelings too....It's great when you can do something for the both of you
Good Job Jane, well done
AVB
You get a lot of things right Easterncedar. I overslept this morning, Don takes his meds at 9:00. I jumped out of bed and ran, well wouldn't call it running 
to bring him his meds. Don't know why I woke up more tired than when I went to sleep. I really don't like when he takes them on an empty stomach, prefer that he eats first. Then as long as I was up let the dogs out, gave Star his med when they came back in, gave them water and tried to crawl back into bed. Thats when Don started again on his fixation. He has an apt with the Dtr in August but I know if I tell her she will take him off the Sinenet. Have asked him a million times would he rather be able to walk or would he rather be in bed or a wheel chair. Now he is starting to say I don't care. Deression I am thinking which is putting me down as well. Not a happy camper to say the least. Sorry for dumping but it just fell out of my mouth.
Yes, i know how you feel....SNAP OUT OF IT , MAN.....but they can't, and so you get used to what they can do.....I wonder what it is like for them,,,is it like a dream? they can see it but just can't get to it? Like a foggy window where you know there is something on the other side and you can even make most of it out but you cannot describe it to another or even to yourself , You see your mate ( and or the caregivers) in anguish you want to say I'm sorry but you end up yelling or laughing at them.....what is it the psp-er feel.... is apathy a chemical/physiological reaction to the sticky TAU protein or is it a psychological way of dealing with their feelings and perceptions....
My daughter said "Boy, this is the Ultimate way of copping out"
Well I'm pretty sure this aint just a way to cop out but we all have to have coping mechanisms eh?
So Keep coping, Stay strong do something else besides wait to see if there will be a change......read to him....B likes when I do that. And if you are a wild one act it out....Just don't get 50 shades Of Gray...oh he's your husband, go ahead>>>>ahahaha shhhhh !!!!!don't tell anyone I said that hahaha
AVB
You are to much AVB, you make me laugh which is very good thing right now. Maybe I should get the book for Don. That is the only thing on his mind and he is driving me nuts. Think I mentioned it before. I know if I tell the Dtr sh will take him off the sinemet which is doing him so much good. What you said, you said very well about their perceptions. He is back in some land but not here.
Hi jzygirl. Mum is in the final stages now but has suffered these episodes of quietness for quite a while. I can only describe them as a comatose state. Either a very deep sleep that not even a bomb would wake or eyes wide open but unable to even to say a word. This may last a day or even longer. In this case carers are unable to give her fluid or food. Hence the severe weight loss and now little input and therefore little output. Now has to have thickener in all fluids.
After all that said today was a better day and Dad and I did have a laugh with her.
Chin up as said tomorrow he will be back to his self. Take care x x
Jim is well aware of what is happening but unable to respond and seems to disconnect from the time but I know he is still aware and it is very hard on people who haven't seen them for awhile to ask them to have a phone conversation when you can't have a conversation yourself. It is very difficult for those who don't know about the disease to interact with our loved ones. I am very verbal about what is happening and the symptoms and why they react as they do.I try to explain that he can understand and react eventually to questions but for others it is very hard to see this of a friend or acquaintance they knew before. Understanding the disease is half the battle for most people. Others run like scared rabbits.
very difficult to explain to others especially not completely understanding yourself . it can be a lot of guess work . sometimes you guess right another time not .
when someone comes in they might say . Leave him alone ,He is tired . How in the devil can he be tired . I am the one who is tired lol
You cannot read the face , something we have always done without thinking of .
it can make you feel very lonely , you can sit for a. Few hours without any conversation but if you get up and walk out of the room they will start talking . or, if you just suit down will ask to for something .
Very true cabbagecottage. I have found Don wants to go to bed earlier than me so I let him but I like to sit up for a while and play some gams on FB. He keeos on yelling well, when are you coming to sleep. Other instance if he is taking a nap, or so I think he is and decide to take a rest myself, he starts taking up a storm. Yes I feel very lonely as well. Except for going to the market if my daughter doesn't have time, the only other I do is take him to the Dtrs. We have 5 apts in August and I am not looking forward to them. Nothing bad, just general checks but I am so tired of being tired and feeling alone.
I know what you mean. B does not talk ; no initiation except to tell me what to do. I ask him whats on tv....B "IDK"...Me." what did the newsman just say? B, "About what? Me, Weren't you watching tv? B "Yah news is on, Me"What did man say? (I was in kitchen , bedroom etc)Nevermind....and that will be greatest extent of our conversation!
That's why I hang out here hahahah
AVB
I often find with my Dad that he doesn't react to an awful lot. When I take him out in his wheelchair I'll point things out, perhaps places we've been or funny stories from somewhere/something and one day he'll burst out laughing, another day he'll not even react. I find the best way to deal with this is to carry on and just talk to him like I always used to, granted this can be hard work at times but I figure he's still the same sharp, smart guy underneath this poison that is holding him back so he'll know what I'm talking about he just can't react sometimes, much to his own frustration.
Think we all need to keep remembering, however frustrating PSP is for us as their close ones/relatives/carers, it's 1,000,000x more frustrating for the sufferer.
Thanks
Dan
That's my boy! xx
Amen Dan, we still have places to go to get us out of a funk or a boredom or if we don't get it, we can still find a way......ie this site.
our poor mates are cognizant of their loss; of their losing....truly a slow hell of which there is no way out but to just watch from the inside out.
AVB
jzygirl, My Don has up and down days. Come to think of it don't we all. Maybe he just needs a change of daily routine. If you are really concerned call the Dtr.
Auddonz (aka Audrey)
you couldn't make it up could you
My mum had the same about 3yrs into her diagnosis, and in the final stages (about a year before she passed) she lost the ability to use the muscles in her face completely (apparently another symptom of psp). This meant she was unable to show any expression at all, and just had a blank expression all the time. I remember my husband saying he was fed up with her 'having a face like a slapped a**** '(not very nice I know and he now feels very guilty about it, as he should!). This awful illness takes everything away.
Yes, apathy, I can most definitely relate. For me what I found works to help bring me up is to recall fun, enjoyable, happy, or pleasant experiences I've had at anytime in my life. Not just once, but I find it really helps me when I recall one, then I go through that same experience in my mind again and again. Each time I remember more and more of the event until I start feeling better. Then I go on to the next one if I still need a boost. The more I do this the better I feel and find my overall functioning in life improves too. Hope this can work for you too. Best of luck.
Swallow test - passed with colors, just not flying colors
Cognitive problems related to PSP
Pneumonia in both lungs -- how bad is it going to be
