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I am new to this post.My husband was diagnosed over 5 years with psp.For the last 2years he is wheelchair bound.At the moment his speech has nearly gone and he had to be catheterised a few weeks ago because of incontinence.Of all his problems the one I find the hardest is not understanding what he is trying to say.We live in a remote area of Ireland and neither our local doctors or the hospital doctors know what psp is. He has been taken off all meds as he had a lot of side effects with them.Are there different stages to this disease or are all patients different? Thank you for any help you can give me.

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  • Hello Doohanpatricia

    I'm in England. There are people here from all over, Ireland, USA, Wales as well as down under (plus more).

    I'm so sorry you too are having to cope with this awful illness.

    My Liz can just make herself understood. I dread the day that she can't, but that will come. So our hearts go out to you. (Liz listens to the posts - I read them to her).

    PSP is a little different for everyone. Depending on the part of the brain being more affected and how it progresses different symptoms come to the fore. The speed of decline varies between people and for each individual. Some times there is a fast deterioration and sometimes it goes slowly.

    Just in case you aren't aware of it here is the Irish PSP/CBD Association Website:

    pspaireland.ie/

    And, here are some very good articles which will tell you more:

    pspassociation.org.uk/for-p...

    I hope you stick around here. I find it very supportive and informative. I have learned so much from others... I don't know what I would have done without them. Loads of experience here.

    Anyway welcome.

    Warmly

    Kevin

  • Thank you for your support

  • Hi Patricia, sorry your having such a time what a terrible illness this PSP is my brother has had it for 5 years probably alittle longer he is also wheel bound has really progressed the last two months cannot under stand him anymore a few words hear and there, I think everyone with this illness is different they progress at times faster than normal at times. Hang in there it's such a trying ordeal something different everyday. Netti

  • Greetings Doohanpatricia...PSP does not have stages per se, though. Each patient goes through it at their "own pace". My husband was diagnosed 4 years ago this March. and he is pretty much where your husban is though he has had the PEG and the catheter and now oxygen within the last year...He is almost bedbound. And no doctors know what PSP is. B was in Intensive Care Unit for 11 days and each day we would have to explain his disease to the medical staff...I say all of this to say that you and your husband are not alone though in the outer reaches of IReland....I find that the communication thing is very frustrating and now he has lost most of his voice.....We have used a letter and word board. If you have an Ipad or other technology , this may help you set up a communication system with him. For us I just have the alphabet and some common words printed out....As of late this has even been difficult to use. So what now Dp? Well you have this site and you have God. Both are ready to receive your rants raves tears questions (to us) and prayers (to God)....I do know that you have to love your man each day and forgive yourself and give yourself a "Job well done" each day....AS you well know this does not get any easier but it still has to be done....Since you are the only one armed with knowledge of PSP , remember that you are your husbands greatest advocate....tell the drs what is best for him and make sure thats what they give you.....well at least have a solid conversation about it....

    Again welcome to this site, If you have questions, answers or just want to cry, you've come to the right place....this family here has really kept me going....

    AVB

    The Lord upholds all who fall and raises up all those that be bowed down Psalm 145:14

    In the day when I cried you answered me, and strengthened me with the strength in my soul. Psalm 138:3

    Wherefore take unto thee the whole armour of God, that you may be able to withstand the evil day, and having done all , to stand. Ephesians 6:13

  • Hi Doohanpatricia - you will probably find there are good days and bad days . Sometimes especially first thing in the morning and later in the day when V is tired her speech gets worse . I suggest your Doctors get on the internet and wise up - its not rocket science for them . The PSP association will also send them literature which is ver thorough especially the Pathway to care booklet .

  • Hi.

    I looked on the internet when Chris was diagnosed and so can doctors. Our GP had never heard of it but the next time I went he was on the ball.

    We live in London and I find lots of people I deal with know it and have at least one other patient.

    My husband, diagnosed Oct 2013, is incontinent, can walk a little with my support, can still eat and drink, talking very limited.

    Judging from this site there is no time-line. Just make the best of where you are, with awareness of inevitable progression.

    Share your experiences with us.

    Love, Jean

  • Hello Doohanpatricia. Welcome to the community.

    One of the best things we did was to get speech therapy for my sweetheart. My guy can't use anything like an alphabet board or typing. His speech is going, but the exercises he was given do help. LSVT Loud is a program designed for Parkinson's patients that some of our exercises were based on. Some information on that is available online, and there are a few videos, if you don't have access to a therapist. A few simple things to wake up a person's "articulators" done every day can keep function a bit. I have found that there are a few phrases that he likes to say, including curious place names from here in Maine (Eggemoggin Reach, for instance) and certain teasing jokes between us, and if I ask him to repeat them after me, he will try.

    That said, I often do not know what he is trying to say, and I share your feelings about it. It is the hardest thing of all, I think.

    By the way, one of the best adventures we had together was a two week trip around Ireland a few years ago. I love your country.

    Love and peace, Easterncedar

  • my mom has PSP, she is on sinemet otherwise she is completely ridgid. It's mostly a guessing game, she has control of her hand, we phrase questions for yes or no answers, thumbs up for yes. Once in a while I ask for a thumbs up to make sure it's working, lol. I hope she maintains finger control I don't know what we would do.

    I have to say at this stage she does every so often say a word very softly. It's not clear.

    Mom, has terrible trouble with her eyes, they tear, can't blink but can close and open them if she thinks about it. Light hurts them, can't see the TV, iPad communication won't help at this point.

  • Hi do oh an patrician, I'm also from a remote part of Irelan and my husband was diagnosed with psp in July of last year. But this site is full of information which is great. What part of Ireland are you from. We r from Monaghan.how are you coping and do you get help.

  • We are almost to this stage as well. Have a catheter ready and he's pretty much wheelchair bound. The stages are pretty much the same I think. At the end it's sleeping. We have Hospice and no more doctor visits. It's now a waiting game even though Charles keeps eating and trying hard.

    Cuttercat

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