Has anyone else got atypical PSP?

I have just answered a question on the site about initial symptoms and it made me think of making a post.. I've been intending to for ages. I thought I'd explain my situation with all the problems to see if anyone else has anything similar or any offers of advice. This is a very short synopsis of the last 4 years.

Initially my husband started with problems in 2008. In 2009 he had vision issues and the opthalmologist said it wasn't the eyes; it was the brain. The neurologist said that it was concentration and attention, then depression, then a chemical imbalance in the brain. We had 2 clear MRI scans. We saw different doctors and consultants. Finally the memory specialist sent us for a spect scan and that showed problems with the back lobe (vision) and the front lobe ( memory, understanding, appropriate behaviour, emotions, following instructions etc). He thought it was frontal temporal dementia. Finally 2 years later in December 2010 it was diagnosed at Hope hospital as PSP with an overlap of CBD.

He was registered severely sight impaired in February 2011. This is the worst part for him as he is unable to see to do most things. He has a little tunnel vision which varies from day to day. He can't be left and I have been a carer 24/7 for the last 2 years. This frustrates him and he gets angry at times.

On top of everything he has an enlarged prostate which causes a lot of bladder problems.

Over the last year his falling backwards has got worse. He struggles to get up even when helped which is difficult. He doesn't seem able to put his feet flat on the floor. Also he can’t process information or follow instructions. It seems at times he is being awkward and refusing to do things. I know it’s the illness but it’s hard. His handwriting has got smaller and is illegible. Sometimes he is very quiet when speaking so it’s difficult to hear. He doesn’t use his left side as much. He has an occasional shake in his hand.

The worst part for me now is the anger which sometimes results in his hitting out and grabbing me tightly. He hurts me at times. He gets very frustrated. He can't stand it if I don't do what he wants immediately. I try to stay calm but it is difficult as sometimes I shout and then he lashes out. My daughter has come to live at home but is struggling to cope, as I am. I am on anti depressants. He has occasional respite in a nursing home. He originally had respite in a hospice but they couldn’t cope. I’m being pushed to look at full time care which I’m not ready for.

They're now saying he is atypical PSP with cortical blindness and frontal lobe problems. He is not at the moment following the normal route of PSP. I know every case is different. They say his case is unusual, which doesn’t help.

Kat Haines the PSP nurse has been brilliant- very helpful.

Sorry to have written so much.

Has anybody experienced anything similar or can offer any advice or help?

8 Replies

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  • hi dorothy

    i understandg your great frutstations of dealing with your husband on aday-to dya basis

    i have Psp as you know from my blogs

    and itis impossible to changa my mind set - i know that -i have tried

    i throw htings down on teh table and cannto put anything down quietly at all

    and i expect htings to be doen IMMMEDIATELY otherwise i forget what i wnated doing(no dementia yet i think)

    cannot relax and am v restless

    it is do difficult for partners and carers alike ot deal with this illnes

    i cna onlyu say tha ti think I ahve been lcuky and have the slow version fo PSP- as i am sitll standign

    butmyh falls are 12 times daily (stress of mvoign i think -hope)

    is it possible toEMAIL as i can correct my typing mistakes mroe easily

    love jill

    jillannf6@gmail.com

  • Many thanks for your prompt answer. It helps. I'll also email you. Please don't worry about your mistakes. it doesn't matter. You are doing great.

  • Dear Dorothy,

    Sorry to hear you are having such a tough time at the moment. Mum also seems to have a problem putting her feet flat on the floor. At first it used to drive Dad mad and he would shout at her but now he realises she can't help it and is more patient with her.

    Fortunately, we havn't seen any real anger or violence from Mum. That must be so difficult to deal with. She gets fed-up and huffs a bit sometimes but again I think it's born of frustration and boredom.

    Do you get any break at all ? Would your husband consider going to a day centre to give you a break from each other? Or could you get a sitter for a few hours a week so you could go out?

    I do hope you find a solution soo.

    Take Care!!

    Love Kathy xxx

  • Hi dorothy

    I am now into my I pad and can send messages and correct them too.

    So courtesy of the local tech centre who have given me the I,pad I am hoping to master it b4 my speech goes

    Then I can ask ./cdemand things and expect them 2 be done!!

    Love jill

    X

  • Hi Dorothy - the symptoms you are describing are not atypical to me - but I am not a doctor - -my dad's vision was very impaired but not sure how it compares to your husband's. Falling and the inability to put his left foot flat on the floor was one of our issues as well - -how are your husband's muscle spasms? Having restless leg type symptoms? We used to just stand for long periods of time so that left ankle could hit the ground. Are you doing range of motion exercises? Could you have OT come out and help train you on these? What medications are you using? Is his anxiety level up? Please let me know - I am more than happy to share with you the medications we used to really help my dad.

    Also - you really must consider getting additional help. It will be so much better for you and your husband.

  • Hi Dorothy, I sympathise as the symptoms you describe are exactly what I have experienced with my husband Tom. The aggression has now gone and an acceptance of his disabilities and a calmer outlook has prevailed, but I don't know whether this is a natural progression of the disease as it coincided with his decision to stop taking all medication except painkillers as he felt the negative effects outweighed the positive. He was also on medication for prostrate problems and had frequent bladder incidences - since coming off mediation these have improved significantly and he no longer needs treatment for the prostrate problems. The lack of being able to follow instructions, or plan ahead what he will need to do, is totally infuriating as you say, and he always decides to do something completely different when I am poised to help him with something he wanted to do immediately at that time! I found if I shouted or retaliated at all he was much more agressive, so I learned to keep my distance, take a deep breath, and curse PSP not him. Its so difficult because in between he is totally lucid and can process things normally, but any ability for compassion or thoughts of other peoples needs has gone forever. I think the intricacies of PSP vary with the individual, and it is very difficult to leave the sufferer in care because we know the person under the PSP "skin" and have adapted to be there when required, wait, coax, cajole,encourage, etc. I don't know what the future will bring and because of this I just want to keep going as long as possible while there is a glimmer of the man I knew still there. Its tough, especially the aggressive stage, but I hope for you it will pass, as it did for me.

    sincerely, Ann

  • Hi Dorothy

    I just wanted to send you a message to say I completely understand what you are going through as we also went through a very similiar story before we lost my dad to PSP.

    Unfortunately ( or may be fortunately ) the decision was made for us about finding a care home, as my dad had a severe fall and was taken into hospital. He rapidly got so much worse whilst in there as the bang to the head seemed to bring the PSP on so much more aggressively.

    It was a trully terrible 3 months with so many complications but he then contracted MSRA and CDiff as his immune system was so weak. This is what ended his life but meant he didn't have to endure any more suffering.

    PSP is such a terrible terrible disease for the victim and for the family who are robbed of their loved ones. I hope your situation improves and that you manage to get more support to help you cope. My thoughts are with you all and wish you all the best.

    Jo xx

  • hi everyone,

    my dad has been diagnosed with psp recently and its really painful to see the progression of disease..he has got absolutely no movement of eyes in vertical direction and had difficulty in walking...also he has become very slow although at present memory seems fine and sppech also is ok. i am just praying that it turns out to be no psp or slowly progressive psp when i consult for the second time...and for all u guys out there having this problem or seeing ur loved ones suffering from it....i really love u guys...and ur not alone....and we ll fight it out till the end and live happily and enjoy this wonderful gift by god called life...so live it to the fullest...

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