Hello

Hi. Just came across this site and am very pleased. PSP isn't very common and sometimes it can be lonely. My husband was diagnosed this year but we have been looking for a diagnosis for a year and a half. It seems to be progressing faster than the websites indicated. This week he has become very week and hallucinating.

May God bless all of you for what you are going through and for the support you give here.

53 Replies

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  • The hallucinating might be medication related. Too much Sinemet maybe. My Dad had hallucinations when he was still taking alot of sinemet for parkinsons. Be careful about how you reduce though.

  • I agree about the hallucinations. My hubby is still taking a very low dose of sinemet which, in consultation with his consultant, we are reducing periodically, a half tablet at a time, but only under their supervision and my reporting back of any changes I see.

    As for the changes you are noticing, everyone seems to do things at a different rate and time so there is no real definition of this disease or even symptoms as everyone seems to progress differently. Just keep posting on here because everyone who writes or answers questions is living it daily, which is more than any professional ever has or does, and usually will give you more Information on nearly every aspect of this horrible disease. All the best and take care of yourself. Dont be lonely. Come on here for a chat. Marie

  • Hi welcome to the family, not a nice thing to go through, but we are all here to support each other. My husband was diagnosed in 2014, he is now in a wheelchair, coughing a lot, on a soft diet, don't know what I would of done without the lovely people on this site. Big hugs Yvonne xxxxx

  • Welcome. My husband was diagnosed exactly 3 years ago. It is progressing slowly and steadily.

    At present the symptom I find most difficult to deal with is his impassivity. And that he will not co-operate. He seems to deliberately wait until I am out of sight and then gets up and risks injury. I'm fed up of things getting broken or him bruised.

    Love, Jean x

  • I understand about the impassivity. My husband has been told he needs to exercise but he won't. He won't eat right. I had physical therapists come to show him how to help me get him back up but he doesn't do the things they show him. I get so fed up too but then I figure he just isn't capable.

  • Sadly I suspect he isn't capable as you say. My husband has't been able to do anything unless someone is there explaining what to do. It didn't happen when we were alone though. It's so sad.

    Marie_14

  • Jean

    Oh how I can relate to that! Last year on Christmas Eve I asked G would he please promise not to move from the chair while I went and had a shower. I was just out of the shower and I heard his alarm go off. He told the lady on the line that he was fine. So I thought he must have banged his arm against the chair. I was about to go to dry my hair when I decided I had better check!

    I found him flat on his back partially under the Christmas tree! He wanted me to help him up which I couldn't do, as even then he was a dead weight and couldn't help me in any way. Had to press the button again and they sent an Ambulance to get him off the floor. I didn't know whether to laugh or cry. Just reading it now I have the same feeling.

    He actually fell when he left hospital 10 times in as many days. This was after he had fallen down the last few stairs and broken the two bones in his right arm. I was scared stiff to leave him even to go to the loo! So that is one thing that has passed now. I wish with all my heart he could walk again but most of all I wish he could speak properly. Although who knows what is ahead of him? I might wish something else next week? As for everything he broke I just told myself at the he end of the day they were just things!

    Marie _14 x x

  • I know. But so often the things broken are meaningful [ not expensive ] memories.

    I try to be patient but the awkwardness and lack of consideration is so alien to the Chris as he was.

    I can't understand how we can reach an agreement that he is alright and within seconds he is up and falling !

    Its all emotionally draining.

    Love, Jean x

  • I remember those days (not that anything has changed that much today)....since my husband is more wheelchair bound, and literally nothing in house left to break, this behavior has calmed a bit. but even tonight, after my daughter came for a visit, he got up and fell over like the tree I know him to be....nothing broken but I can't help feel some falls are in response to other stuff happening.....Apathy seems to be a way of life for Bruce but soemtimes I think "you did that on purpose" I have gotten way better at my own negative behavior though....My blaming him never diminished his falls....He too had some rather hallucinative episodes. More sleep walking...but He got off something... maybe sinemet....

    AVB

  • Its still a feeling of disbelief that Chris can be this difficult.

    So I shout to try to break through to the real Chris. I'm not proud of this. It doesn't feel like the real me either !

    Love, Jean x

  • Don't be hard on yourself. We are all doing the best we can. It's not easy and I've shouted myself. At least my hubby forgets by the next day. One day at a time.

    Don't pile guilt on yourself. This is hard enough.

  • Yes. Chris forgets as soon as I smile at him !

  • Like PSPwife says, don't be too hard on yourself....just make it a goal to take a breath between or before the flares ...Tell him your'e sorry and move on....

    trying hard to do it myself!

    AVB

  • We're both quite good at the apologising !! We've never borne grudges but I would prefer a calmer life !!

    x

  • Amen sister!

  • Hi, welcome to the best site on the Internet. We are all Carers, like myself, husband diagnosed 2013, or sufferers of this evil disease. We share the Good, the Bad and the Ugly. Some things will frighten you, some cry, a lot will make you laugh. We are all in this together, the professionals no nothing about PSP and all its horrors, so we rely on each other for support and advice. Feel free to rant and rave, kick and scream as much as you want. Nobody will judge, all too busy feeling the same.

    You are not alone anymore, you have just inherited one of the best families in the world, we are from all around the planet. We have your back and are always here, if you need a shoulder to lean on.

    One day at a time is the motto, you can acheive that, even if it's only a few days, you will be doing fine.

    Lots of love

    Heady

  • Well said as Heady!

  • Thank you for all the welcomes. My husband is not on Sinemet. He is on other meds for diabetes and epilepsy though. The hallucinations are new and a little freaky (asks where did so and so go, when no one was here). Could be lucid dreaming. My dad has alheimers and he does it too.

    It does seem as though the doctors need to know more about this. Some of the things they say seem contradictory to the reality I am living. They say this isn't hereditary but my mother in law had severe alheimers and my brother in law died from a neurologic disease. My husband is 67. Two years ago he was working and playing golf. This is a horrible disease.

    Thank you for being here.

  • PSP wife, welcome to a great group. I have only been here about 2 months ( I think).

    My husband appears to have a very progressive form of this awful disease. 2 years ago I noticed he was walking oddly. That was ignored for almost 12 months by lots of doctors. Anyway when he fell down some stairs and broke both bones in his right arm I kicked up a fuss. Then he saw the Neurologist.

    However it wasn't until the week before Christmas last year that we were told it might be a rare form of Parkinson's. The following month we were told it was probably PSP but he was showing signs of MSA too. We haven't seen the Neurologist since but are due to see him in December. Glad this is not serious!!! It makes me mad to be honest. My husband is in a Care Home after contracting pneumonia. He has really gone downhill. Not sure what I am going to do as he wants to come home but I don't think I could manage him now.

    He hasn't had any hallucination's. At least not yet! He can't walk/stand/his hands are now struggling to reach his mouth/doubly incontinent/swallow not very good and he chokes when he drinks/his swallow today was worse than it was on Thursday for example.

    PSP wife we are all in our own living hell with our loved ones. However people here are so good and kind. We all understand the feelings of those going through this. I have found people so understanding and willing to give advice where they can. Glad like me and everyone else you found this site! Sorry you had to look for help though just like we all did.

    Marie_14

  • Thank you for the warm welcome. I am sorry you and your husband are going through this too. My husband's progression seems fast like yours. The last few days he has great difficulty getting around and has been incontinent. He has a bit of the flu so I don't know if it is the flu or the PSP.

    It is good to know I am not alone. The doctors seem unfamiliar with this disease.

    Take care,

    PSPwife

  • Chris is not as advanced as your husband I think but, if he has a cold or infection he goes downhill rapidly , then gradually regains but not as good as before. That seems a pattern with him.

    Jean x

  • Thank you. It really means a lot to have this support from people with experience.

  • PSPwife

    He could be going downhill because of hiscold/flu? I was told that if my hubby gets another infection it could kill him. So take extra care of him at the moment. An infection you might catch will clear up but someone with PSP needs to be extra careful.

    I was beginning to think my husband was the only one with such fast progression. It really is a case oif everyone being different?

    Take care.

    Marie_14

  • Yes. All the things I read say we should have six years together, but I don't think that is accurate. Hang in there.

  • Aspiration pneumonia is leading cause of demise. My husband is on PEG tube as he could no longer swallow. However his docs have just now started trying to sleeping aids that are crush-able for the tube......Thickened liequids help immensely but even those are losing their power to keep him from choking...

  • Welcome but sorry under the circumstances of these diseases.

    I just wanted to ask if the hallucinations started when you noticed flu?

    My Mum was very ill in spring this year with flu and her hallucinations were awful during that time. She hasn't had any since but does have cognition issues so may return as that progresses more.

  • He had a couple of little hallucinations (seeing a rat and hearing people) but during the flu they were much stronger and in depth (seeing family members, alive and dead). As he gets better they seem to be tapering off. His mum had them and she had advanced Alzheimer's.

  • Nan had them too with her dementia so I'm expecting Mum will get more as her cognition deteriorates further. Infection really does do funny things to them

  • I notice that my husband diminishes when I am sick!

  • I am afraid for my kids neurology as well!....I have had epilepsy since I was 21 and now my husband is doing this PSP thing....what genetic mutations did we give our kids....They all have high IQs, one is an entrepreneur, the other is a landscape architect and the other is an analyst....so the IQ part has not been affected...behavior is good....no Alzheimers in family.....well grandpa.....I probably have dementia...It will be interesting to see how my kids faire in all of this....

    AVB

  • The doctors were adamant that PSP is not hereditary but there are too many neurological issues in my husband's family.

  • Even if our loved ones get PSP, there are other nuerological anomoles that could be witnessed due to the parents genentic factors...jut a thought...some strong some debilitating ...I must say if am a bit worried for my own kids who have two parents with neurological disorders that are not inherited....

    In the last hour , I have been getting scared...for no reason....I took two Klonopi.. I don't like takeing these things fear trumps sanity. Please call on the Lord to help me take care of mhself....thanks

    AVB

  • Oh AVB, I hope you're feeling better. Sending prayers and warm thoughts.

  • thank you....I am having a rough time lately....but really everyone is good, even me....

    Thanks for your thoughts,

    AVB

  • Re the hallucinations. Steve has them on and off. Says his brother is sleeping in the bed with him etc! Comes and goes and nothing to do with his meds. I hope this will be the case with your husband also. At least Steve had nothing frightening so just soothed him and he went back to sleep. I spoke to the doctor about this who said not to worry and now they seem to have stopped. Welcome to the site, very sorry you have to be here but at least everyone can give you support, advice and love. Kevin is a marvel with his information and I thank him very much for his help.

  • Yes there are many Easterncedar, Kevin1, Mind0vermonkey etc who are great assets to this site. But since you live in the US, CHC won't be your problem...or solution!

  • Dear PSPwife,

    Sadly I welcome you. But if you got to be somewhere cuz of PSP, this is the place! I see you are from the good ole US of A. We are from Arkansas...moved here 25 years ago. I have read where sinimet users have had hallucinations. I most certainly would talk to your doctr about this drug and your husbands behaviors, symptoms, side effects. If he is taking other meds they may be doing a combined effort, not necessarily good, on your husband...talk to the doc. I have read all your replies and I think I will just comment as I read along so please again let me welcome you here . We are all hear for you. Sometimes the hardest part is feeling so all alone but remember, you really are not...I like to share a few scriptures with you to help with where God is in all of this. If you are a praying person, you will find comfort in His words. As we go along please feel free to ask or say or inform or just cry...We are hear and so is God,,,if we can take it , you know that He can!

    Sincerely,

    AVB

    Fear not for I am with you, be not dismayed, for I am your God; I will strengthen you, I will help you , I will uphold you with my hand of righteousness. Isaiah 41:10

    I have said these things to you that in me you might have peace. In the world you shall have tribulation; but be of good cheer; I have overcome the world. John 16:33

  • Dear abirke,

    thank you for the scriptures. I have never been stronger in my faith than now. It really is my only salvation.

    Used to have family in Berryville in northern Arkansas. Very pretty.

  • Did you say where you hone from now? Berryville is on the opposite corner of little ole Fayetteville who lost like a high school team playin; LSU tonight,,,

    Wow that number 5 on the other team he s fast.....94 yard run.....the ball we fumbled , he recovered and won the game....heck it was won the first quarter....neither here nor there.......Leaves not so great this year, not much rain or good old cold days.....I still love it here in the Ozarks and Boston mts.

    And I am glad you like the scriptures....if you ever just need a private prayer theres a way to connect one on one....you;; find it faster than me telling you how,,,, Hold fast my friend even ifn your weakest times , He;s thereready to hold us up....praise the Lord for that, eh!

    AVB

  • Dear AVB, we are now in Fresno, CA.

  • Oh my mom and dad lived there ....I think they were married there!

  • Oh see, it really is a small world!

  • My daughter is a graphic artist she met her photographer several weeks ago online . Unbeknownst to her, He had done work for a school (years ago) that she went to visit in England the other day.....They did not know that til they got to talking !!!

    6 people away from knowing the whole world! hahaha

    with the internet etc....thats probably down to 3 !

    AVB

  • My husband seems to be recuperating from the flu and we are back to the previous normal (no more hallucinations, makes it to the bathroom in time mostly). He is very tired and the flu has progressed the symptoms but we are sleeping most of the night now.

    Thank you everyone for the support. You all helped me through the worst of it.

  • Follows my experience. He occasionally has vivid dreams though and thinks things have happened.

    x

  • Hi PSPwife... As some have already suggested, the hallucinations could be med realted. I had a period of bad nightmares... violent and I was taken off a certain med and have not had a nightmare since.

  • Hi there welcome to our family, you will find this site so helpful. I Have told people here things I haven't even told my closest friends. My dad has quite a few hallucinations and I find the best way to deal with them is to go with it because if I try to tell dad they are not there he just gets agitated and it just makes things worse. The medication the Drs have tried hasn't worked and dad is very mobile and falls over constantly. Dad is on a pureed diet and thickened drinks even his beer which he hates. Dad can become quite frustrated and can get aggressive but the past week has been good 😀. My dad has no idea of his needs and even when I ask him to tell me when he is going to get up (he gets up at such a speed Linfor Christie has nothing on my dad) he never does so I have to be ready to pounce just in case. Take care and I am sending you huge hugs xxx

  • Hi millie1218! I know what you mean about saying things here that I wouldn't say elsewhere. The hallucinations have subsided, thank heaven. I did just go with it. Nothing else to do. Seems we argue about enough things, I'm not going to argue about imaginary rats and parties. At least he had a party going on in his head 😅.

    Sending hugs back.

  • There must be something about rats and they were on the dining room table and dad was trying to catch them!! A sense of humour is a must. Like the idea of a party dad hasn't had one of those yet xxxx

  • Some hallucinations sound good to me. A friend thought the doctors took her to a party and she sat on the television and drank champagne ! Bring it on !!

    Share your bit about them moving fast, having promised not to. That's Chris to a tee !!

    xx

  • Hi! Looks like we have a lot in common--husbands recently diagnosed with PSP, live in USA, uncertain of the future and how to best help our mates. Where are you located? Best wishes to you and your guy!

  • Babowen, we are in Fresno. Thank you for the kind words. Took care of my mother in-law til she passed in 2013 from Alzheimer's. Also taking care of my dad with Alzheimer's. Feel like this is my "normal". Best to you and yours!

  • We are on the east coast, NC.

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