Do many other people's partners have this aspect of PSP ? Veronica's seems to be getting worse and worse especially if she is anxious about anything which is probably most of the time . Her riser chair is next to her bed and she will get up from it and shuffle a couple of steps to her bed and rearrange the duvet for two or three minutes shuffle back sit down and almost immediately get up and repeat the same thing - this can go on for half an hour or more doing the same thing over and over again . Everything on her bed side table has to be arranged in a very specific order although she doesn't always remember the order and insists the new order is what it always is . I have to dress and undress her in again exactly the same order and here she corrects me if I put afoot wrong although some days she gets it completely wrong trying to do the morning order at night .With food if I have cooked two or three vegetables and some meat she will eat each lot of vegetables in turn and then lastly the meat .She is obsessed with handkerchiefs never less than 4 on the go tucked under her pillow taken out and put back - up her sleeve and out again - back under the pillow and so on all day until we go out and then she leaves them all behind and when we are settled in the car ready to go she sends me on a search and retrieve mission which usually means I find them all in her coat pocket where they have been all the time .. Lots of other things as well- I have to admit it drives me bonkers- if other people have similar experiences I would love to hear how you deal with it because I am blowed if I know how to .
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Hi Georgepa, Colin can't do much now but when he was still walking he would constantly check the pressure on the boiler and the water tank. Like you, it drove me bonkers, mainly because I had to keep escorting him upstairs to check the tank, sometimes several times an hour. He also had a thing about chipped paintwork. If he saw a chip he would paint over it with Tippex. For some time he did it without me knowing. I went into the bathroom one day and wondered what all the slightly off white spots were on the door frame. I thought they were splashes of something. When I realised they had been "painted" I asked C about them and he said he had done it. We now have spots all over the house. He also likes lots of handkerchiefs, I think initially it was because of excess saliva, he could dab his lips but now he has started tying them around his feet or ankles, sometimes, quite tightly. I asked him a few weeks ago, why he does it, not expecting an answer and he replied quite clearly, "Cos I can". The poor chap can't do much else now so I just untie them every now and again so he can tie them back on. At night he ties them to the bed guard.
I'm not much help to you though Georgepa, no solutions I'm sorry to say. Perhaps others can help.
My husband perseverated on my parking of the car just so...back up an inch go forward and inch....even if I were in the "right spot" to begin with! The thermostat....at church at home in the day in the middle of the night crashing backward as he turned to go back to bed! I don't know if this is a perseveration or not, but he will watch two maybe three shows at once trying to nestle them between commercials.....and the list goes on....his morning bathroom routine, foods on a certain day etc.....
I cannot remember if this behavior is PSP oriented but I cannot imagine why not.....its like a computer with an overload trying its best to get the job done.....jobs done.
It's exasperating but it sounds like you are handling it so that she is satisfied.....Maybe you could have a stash of handkerchiefs in your car so that you can make them appear for her....or just ask her which 5 hankies would she like for the car and keep them in there.....I don't know.....Good luck I do hope you have someone for her so that you can go and 'perseverate' on something that you love !
Sorry to change the subject, but how is your new wetroom!
Hi George George keeps asking me to close the doors, and then he wants a tea cloth, then he will call me to move his chair so he's feet are resting on the fireplace, only to push it back when I have done it, he also thinks that I can do a hundred things at once, sorry also not much help have a good day Yvonne xxxxx
Builder has been away on holiday but back today and hopefully finished tomorrow . Then comes the challenge to get V to change her routine . I have been chair washing her for over a year now and she views the wet room with deep suspicion . Thanks for advice on handkerchiefs - the trouble is I forget until it is too late !
Georgpa
How this post does resonate though your situation actually sounds worse than mine. C is obsessed with touching walls (go figure) which often has amusing and sometimes dangerous consequences as he lurches to reach a wall when I am supporting him, and takes me with him. We don't have the handkerchief issue, use kitchen roll instead with rolls stationed around house and in car so there is always one at hand. Used paper lights fires. In fireplace for heating and garden bonfire. I think C really tries to fight his OCD tendencies, which came with PSP as he used to be a major lackadaisical figure. One of funniest OCD examples comes from four years ago before we got his diagnosis. I bought 18 solar garden lights - the kind on plastic spikes that you just push into the ground. C distributed them around garden and then every morning went and collected them all and put them in one place and each evening replaced them alongside paths across the whole garden. You can imagine the conversations with him insisting they needed full sun to charge and me pointing that they were all in full sun during the day when in their night-time positions. Culminated in me insisting he did not move them one day and guaranteeing they would light up after dark. They did and he agreed I was right. But next morning they were all moved again and I gave up. Now it all makes sense. You actually seem to be coping well, Georgepa.
I'm afraid I have been getting a little snappish, is how I deal with it, and my sweetheart is not as obsessive as your wife seems to be. With him it is his wallet and his watch, primarily. " Where is my wallet?" is my least favorite sentence in the English language at present.
Oh Yes Same in this house Des always takes more than one tissue and most get to the bin without use.they just have to be out of the box ready.When I pull up in a proper parking place he puts on the hazard lights and even stopping at a pedestrian crossing he puts the handbrake on.I suppose it is not having enough for him to do,but I feel another scream day coming on,crushing cardboard boxes just are not enough.Some people understand that tea has to be in the mug with the chicken on it but others feel any mug on the Des mug tree will do they will learn in time!! I am watching out for early warning signs of my OCD. It is a grey day here so far in Somerset but we have had some lovely days this week. My neglected roses are looking good despite me.Hope weather good with you in Devon. P
I just read an abstract from a Japanese study where they found that 24% of the patients had ocs as opposed to ocd. In this writing OCS is defined as, "frequent but under-recognized behavioral and psychological symptoms of dementia in PSP". OCS is differentiated from OCD in that the former does not come with delusional or hallucinatory ideas and behaviors. PSPers with OCS obsessed with," daily trifles and physical symptoms among other things".
I found other abstracts, but for now I will try to 'rap' my head around this one....is this only in PSP? My husband perseverated early in his diagnosis.....must one be in significant progress with this disorder before developing this behavior? What is the measurement of significant progress, is it length of diagnosis; stage of behavior;MRI findings?( Japanese study found a lesser ability of the right side of the inner and middle parts of the brain in those with psp suffering with ocs than wiht those with psp and no signs of ocs.)
Ok quarter to three a.m. with no real answers except to say that apparently ocs or d is a behavior to be aware of with those who have psp.
Thats really interesting - the OCS. and the brain bit - V leans over to the left all the time and the left side is controlled by the right side I believe
Yes! My guy leans terribly to the left, too, an awful, sad-looking slump. He now says it hurts to be brought upright, and I'm sure it does, although he lets the lovely cheery physical therapist tug him about!
hi eastern cedar how old is the lovely physical therapist mate mr c might be bluffing mate if I had a lovely physical therapist I think I would be leaning over all ways not just to the left mate
take care regards to mr c for me no need to tell him to hang in there he seems to be doing alright on hes own mate ha ha peter jones queensland Australia psp person and I lean backwards
Hi GeorgePa, sorry, this is one symptom S seems to have missed! Thank goodness, sounds very tiring!!! As someone has said, maybe it's a lack of things to do. You could try getting her something to fiddle with, worry beads, or Rubix cube, any little hand game. She may not know how to play, but it will be something for her hands to do. If you don't think that will work, how about a puzzle. Go to one of these early learning centres, they might have something that you have to put everything in the right place, without being the traditional puzzle, that she might not be able to do. You will probably have to change the pictures, so make them un-child like, nothing that a bit of paint wouldn't cure. Put your thinking cap on, the brain needs working, you will have to think of something that V can do, to keep it occupied!
C has a bag of things given to him at different times by the family for birthdays and Christmas. He has a couple of stretchy men he pulls about, a long snake thing that is supposed to make a cube ( neither of us have managed it yet but he fiddles with it). A very smooth wooden cross which he holds in bed, along with his handkerchief, and the thing he fiddles with most is Ed's Lace. He ties it into knots and hands me a tight ball that takes ages for me to undo.
I went to the paint store and got some paint swatches. (they usually come in the size of a bookmark) anyway get them as close to color as possible , glue a few swatches on a sturdy backing and then have V find those colors from a pile of colors. theres a myriad of colors from which you can make several backings...change them out with sayings on a color that must match an identical color and saying or picture or number, whatever. Basically these 'puzzles' are free just a little effort to modify and adjust haha. I tried it on B, he could not see down. so im shootin' at ....somethin' I can't remember the saying.....
That's a lovely idea - my problem is that V will do things I present her with for only avery short space of time and then she loses interest and quickly goes back to her repetitive behaviour .She used to be a graphic designer and also ran craft courses and made and sold greetings cards - she was incredibly creative but now she doesn't want to do anything. I am afraid her cognitive understanding of how to do things is rapidly disappearing - even the remote on the TV is now beyond her on bad day . But thanks for the suggestion .
Yes the executive functioning is something that regresses as the disorder progresses. Slurred speech, loss of balance and couldn't/ wouldn't do the simplest of tasks (almost blew himself up a couple of times cooking!)were all early indicators. Now it's all of the above AND not knowing the answer to stuff he knew last year; increased choking and inability to cough......still has his sense of humor ....
My daughter is a graphic artist. her starting pay was more than my 16 yrs as a teacher......go to theatersquared.com she designs and manages website and all of the advertisement.
Did you know that 's is appropriate in proper nouns ending in s such as Arkansas' = "Arkansas's entertainment." We used to sit around on Saturdays and edit newspaper paper.....she still better at it than me! hahaha
Oh brother, I just edited this post ! I failed to complete my thought....that pluralized proper nouns ending in s CAN be given an apostrophe s ! thus "Arkansas' entertainment" can become "Arkansas's entertainment." Though it may flow better insteadto use "entertainment of Arkansas" Ahahah it's only taken me 3 days to see this error. So sorry to anyone who actually read this jammering.
I think that's a brilliant idea!!! Where do I go for my fitting!!!!!
Been shopping for my little baby today! I know it's not something you may approve of, nothing like retail therapy, even if it is for a soon to be very spoilt dog!!!
Hi, it's a male miniature schnauzer coming on Tuesday. No it's not potty trained, so that two lots of "pee" I will be cleaning up. It's alright, I know I'm mental, that's why GeorgePa is ordering me a straight jacket!!!
oh This is an energetic intelligent breed ! I have a very intelligent dog with dumb masters! We should have trained her as a puppy! However an intelligent breed (such as yours) are easy to train as in piddling on floor......my dog soon found the outdoors the best potty! 3 years later I am trying (and succeeding) to walk her without her pulling! one trainer stresses when you have control of the dog on the leash you are able to quickly train the dog in all other matters!
Being that my dog is still in control, I cannot tell you if that is true...so maybe you will soon be able to tell me hahahha
Have a wonderful time, Heady, Congrats on the new member!
as far as him seeing things around him he has been like that for many years . he couldn't stand to see. Dirty cup left on the table , he would even ask me if could risky the room up to him it was too messy . it wasn't at all just some things around that I would be using at the time .
His dinner could only have three items on the plate , said it out him off of there were more , I just went along with that .
I can see now he wasn't being fussy at it was just too much for his mind ,
the times he has had hallucination I have to clear everything in sight so that it doesn't make him feel any worse .
it's a strange old thing isn't it . .Ae can't all possibly be BONKERS ! Lol
Hi everyone. I know it doesn't help but it's so nice to hear that others are having this too! Straightening the rug is my mums current favourite. I must do it 20 times a day, even when it hasn't moved an inch. I think they get fixated on something and that's that, until the next fixation comes along. Sadly my patience isn't what it used to be so I'm a bit snappy about it after the 15th time of straightening an already straight rug! My toddler views this with much amusement, it's like they are kindred spirits! Woe betide the person who cuts a toddlers sandwiches into squares when the wanted triangles! Ring any bells?!
Same thing here in the USA (Kentucky). My bride is often obsessed with doing certain things over and over. She's been obsessed having her purse with her, even though theirs no need in her carrying one (I have everything that she would need ... money, extra catheters, Depends ... just no makeup, since she's no longer interested in wearing that). I've also noticed she likes to reach out and touch things. If we're in the car, she wants to reach for the car dash and windshield. If I'm pushing her in the wheelchair while shopping, she'll want to touch practically everything we pass (walls, clothes on a clothing rack, etc.).
She frequently gets her mind made up about something and will be totally wrong. No way of changing it, unless I take her to wherever that something is and let her see it for herself to prove her wrong. She then shrugs her shoulders, gives me a quiet smile, and then we move on.
She hallucinates a lot, thinking our adult children are in the house and sleeping on the couch. Once again, I have to walk her over to the couch and prove they're not there. When she has a UTI, it's really bad. But she does it when no UTI is present as well.
What a disease! Been dealing with this for the past 6 years, but willing to do it for another 60 if I could. Man do I love this woman! We just celebrated our 34th anniversary last weekend. Sometimes my bride is fairly normal, but other times she's got the mind of a toddler. And who doesn't love a precious toddler?
I always try to find the good in this disease and just deal with it. At least my bride isn't in any physical pain and she still has most of her memory. I hope each of you take time to treasure your loved one.
Happy 34th Anniversary! We celebrated our 30th on the 6th! Bruce also turned 55 in May! We too like see the good and or the humor in it. Its so easy to be sucked into the pain of not having your mate. Yesterday, I just sat and cried on his shoulder while I came to a realization that my mature, capable daughter was going down a path with serious consequences.....it was good to have his shoulder even if he was more concerned about the water coolers need's! haha (she laughs with a bit of woe)
Hi Ketchupman, great name by the way. The funny thing is my hubby now loves ketchup on his food when before PSP he hated it. I suppose it is because he now has a sweet tooth, sugar in all drinks when none before.
I'm not replying to you because of Ketchup, just got side tracked.
I am responding to your last paragraph. My sentiments exactly. If I can find something to laugh about I will and I too am so thankful C isn't in pain. OK, there are times when I don't feel like laughing, the complete opposite in fact, but I do laugh more than I cry.
Hope he likes Heinz ketchup. That's my last name, hence the alias. No relationship to the ketchup empire, unfortunately. But they do make some great products.
Hi Georgepa not much help on OCD/OCS but can certainly agree with the hankie use, hiding them or forgeting she is holding one. I have tried paper hankies boxes in bedroom, kitchen, lounge and car but she still insists on proper hankies so I now carry spares so I do not need to run around looking for them. Best wishes Tim
My husband gets up in the middle of the night to go to the bathroom and then as long as he is up gets something to eat, like Frosted Flakes. Don't understand this at all. I don't hear him. He eats his meals during the day, along with a snack or 2. Strange!
Thanks for all the brilliant replies - what a weird and wonderful world we live in -I am surprised any of us have remained sane . I will leave you with this one - Veronica insists on having a hot water bottle every night but not in her bed but beside her bed as it will get warmer as the night goes on .Really can't get my head around that one !But then as my mother used to say " everyone in the world is a bit odd except thee and me and even thee's a bit peculiar "
This all sounds very familiar Georgepa, P obsesses about things and I thought it was just him. He nags me to check the oil and water in the car over and over again, then he obsesses with toilet matters (!), at the moment he keeps thinking he`s going to be sick even though he hasn`t been sick for years. He waits until we are in the car and then he wants a hankie or a comb or ... He still checks that I`ve locked the front door as we go up to bed every night, oh I could go on and on but would that make me obsessive then ?
I've been following and reading the posts on this site for over a year now and have learned so much from all of you! Thank you for your honesty, your sense of humor, and your willingness to scream. This is my first time posting, and the topic of OCD rings a clear bell, so I decided to jump in and finally respond. My husband was diagnosed with PSP for close to two years now, but there have been signs for at least four years. He was a brilliant, creative force, full of life and energy, but it's hard to see much of that anymore...an occasional glimmer is all. He was an amazing artist, and I feel so glad that he has continued to paint in a new, very loose, abstract style. He was a classic ADHD creative live wire, extremely gifted, and along with that came a tendency toward depression, anxiety, and OCD. Now, those difficult parts of his personality are most of what's left. It's exhausting, aggravating, and nearly impossible to deal with on a regular basis. If not for my wonderful (but unfortunately far away) family to bolster me, I couldn't do this! I've been fortunate enough to get a few two-to-three week breaks this past year when his lifesaver sister has taken him to her house a state away. During those times, I've been able to heal a bit and remember who I am. This repulsive disease tries to own all who it touches, caregivers and victims alike. I hope all of us front-line caregivers can find time and a place to heal, because we must. Hugs to all....
Hi Horsegirl, glad you have finally decided to join us. I find by communicating with everyone on this site, it does stop some of the loneliness, that caring for someone with PSP brings on. My husband was diagnosed two years ago. He had a stroke two years before that, which bought on a lot of PSP symptoms. I just thought it was stroke damage, but it just kept getting worse, eventually thought he must have had another stroke, due to a very bad day of falling, we were coming down from a mountain walk, normally took an hour, this walk took six!!! So back to the doctors and for once they actually took me seriously and the rest is history! I'm convinced that S has been showing signs for the last 15 years, his spacial awareness has gone. I remember a very vivid incident back in 1997, that must have been because he was starting to have problems. So who knows how many mishaps that I didn't notice!
In one way I am lucky, S was left with apathy from the stroke and PSP has just made this worse. He was a successful business man, always on the go, played lots of sport, the love of his life is rock climbing or mountain walking. of course all this has gone, although a friend is going to try and take him climbing on one of these inside walls next week.
Look forward to hearing from you again and getting to know you. Please feel free to answer any question, rant and rave as much as you want, you KNOW we will all understand!!!
Interesting what you said about spacial awareness - I noticed this with V three or four years before she was diagnosed . She would stop in a doorway or passage and would not be aware that people could not get past her and look quite bemused if they asked to get by and would not seem to understand the space around her .- she would just look a bit puzzled or bewildered .
Hi GeorgePa, with S, it was his driving. We had a very unpleasant experience in a foreign city, many years ago. S just didn't seem to know what to do. Cars, buses coming at him, from all angles. I was scared stiff, it was a place, most would be frightened of, but S seemed to be totally confused. He was a very experienced driver, in all circumstances. But I could tell that something just wasn't right. Ever since then, his driving went from back to worse. The rows we had, well, how it stayed out of the divorce court, I don't know!!! Looking back, I always felt there was something else causing the problem. I wonder how many people have spilt up, or been killed in a car crash, long before PSP, was diagnosed? Of course, it was me that had the problem, I was totally neurotic, something wrong with my eyes. Even went to the opticians about the problem! I wonder what else, we have gone through, that we still haven't put down to PSP yet! All my time with S, 25 years, a lot of that has been ruled by a disease, that we didn't know about! Don't get me wrong, it's been a good life, but there were times........
Again familiar -V's driving went to pot- sitting as a passenger it was like a white knuckle ride as driving through gaps became very "problematic " . When she hit a stationary van when there was enough room to drive a bus through - that's when we decided enough was enough ! All before the PSP diagnosis I hasten to add .
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