just found out my dad has psp

my dad has psp the eyes dont respond good up and down, sometimes shakey hands, he fell three time in a week, he was falling on and off maybe ounce every two weeks

he says he can not write checks anymore. so family writes them. does anyone have a idea where it goes from here and how fast does it take for theses symptons to get worse we are not sure how long he has had psp we stared noticing different things with him probably a year now

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  • hi jd spearman well im sorry that your father has psp has he been diagnosed with it by aspecialist \\ well where do you start it sounds all to familar but i dont think that any of us with psp would be able to say what stage your dad is at right now it does sound like the early signs he may go for years like this and have the slow proggresive type i sincerely hope so\\\ i have psp from 2004my speech went and i had falls not to many \at first and my handwriting went\\ thank god for computers otherwise i would be lost io can still do my signiture but as for writing a letter i would be no good my writing is uninteligible [ a bit like my spelling ] im starting to think but i think that all of us on here have different stories to tell and the way that psp effected them \\my wife has noticed there has been a change in me this last year i have got a bit worse but still breathing and thats me \\ i have tried to be positive about it and have kept fairly active which i feel has helped but then again some of us with it cannot be very active i wish i could give you some positive information its as hard road to go along for the sufferer with psp and the carer i wish you good luck and good health in the future and to your dad i say HANG IN THERE MATE PETER JONES QUEENSLAND AUSTRALIA

  • Hi JD, Since your family is new to this disease i suggest you all go and talk to your specialist or get a Parkinson Nurse to visit you, so it can be explained to you and they will give you contacts and future information for when it is required. Most people "carers" i talk to struggle on without ever knowing there is help out there so push everyone to come to your dads aid. I will say their is 4 different types of PSP and if you look up the US site (curepsp) you will find just about every question ever asked about PSP on the forum. Your dad needs help before he has a real nasty Fall and every fall talks it's toll on the body, You need to put things in place Now! A Living will,Medical directive, Guardians ect asap as it is hard to talk about these subjects but you need to know what he would like done especially with Medical procedures, for example will he want to be Peg fed when he is unable to eat? or will he believe that is prolonging the agony, he will change his mind as the disease progresses and wont be interested and cant make up his mind soon. So talk to a professional like a Parkinson Nurse or a GP who has heard of this disease, as you and your dad have a lot to do quickly and the sooner it is done and forgotten about you can then set about enjoying your time together as it will be much more meaningful.Take care and stay strong for your Dad, i know this is super unbelievable all our thoughts are with your family right now.

  • Hi

    Please could you tell me where I can find out about the 4 different types of PSP? I'm desperately trying to come to terms with the fact that my husband, who was only 50, and had had Parkinson's disease diagnosed in 2006, then PSP diagnosed in just April this year, then passed away 2 months ago, whether his symptoms were actually PSP related - would dearly love to find out before the Coroner's Inquest.

    Many thanks.

    Fiona

  • Hi sorry to hear about your dad. My mum was diagnosed last year and half as she used to fall as your dad now for the last 3 years. Her eyes are as your dads and droopy eyelids. Since she was disgnosed i feel she has progressed every six months. She now falls about twice a day even with supervision. Sometimes impulsive and gets up from seat without asking us. She couphs alot. Untill last month she walked for an hr each day which finally reduced to half an hr and ive had her in nursing home last two weeks as i cant leave her at home anymore on her own as i work during the day. Her speach is much worse compared to last year i have to ask her to repeat herself. I suggest you get help at home and try to avoid nursing homes. I was same as you and i still dont know how long she has to live. U just have to deal with it as the symptoms progress. Yes my mum cant write any more and has trouble eating. They are giving her pure food at nursing home to be on safe side because she coughs and chokes alot.take care..... Xx Mia

  • Hi Mia.

    Is the carehome using thickeners for your mums drinks? This helps to avoid coughing and choking and ultimately reduces the risk of aspiration which can lead to infection/pneumonia.A speech and language therapist will recommend this.

    Take care

    SheilaN

  • Very sorry to hear about your dad .... it all sounds very familiar my mother went from being a very active 82 year old, loved dancing, golf, walking and bingo. The she started to fall a few times, and other things just weren't right. However, she wasn't diagnosed with psp until six months or so before she died in February this year aged 86.

    So atleast your dad and your family know what you can expect and can find out how to deal with it .... get advice from the PSP Association.

    Bob

  • hi

    i urge you to hjoin the PSP assoc if you r in the uK

    or the US equivalent

    htis website is great

    !!!

    i was dxd with PSp in dec 2010 and am pretty sur ei hav ehe slow type a si am still here., upright apart when i fall (down to 5/6 times daily) read myh blog 4 r the synptoms

    lol Jill

    :-)

  • Hy jdspearman,

    If you are in the UK the first thing to do is ask your dad's GP to refer him to the district nurses and most importantly to social services. This will open a lot of doors e.g. physio, occupational therapist, respite care, care at home, etc. The whole package that is available as things progress is invaluable. Yor dad will be provided with all kind of aids, equipment, advice. It's a massive step to ask for the referral but you'll be given so much help. Also join the PSP Association. Their carers information pack is fantastic for you, professional carers and carehomes. Good luck.

    Take care

    SheilaN

  • I am so sorry that you dad has PSP - my father had PSP as well. PSP is different for everyone - symptoms are generally the same but happen at different times and the severity differs. I have attached a few websites that can offer you some information in regards to stages and some general information - -I found these to be good pieces to bring to appointments or give to people involved in his care - always an extra copies left in the car in case we needed to visit the ER - -the next challenge is making sure it is read. I don't want to throw too much at you because it sounds new so these sites maybe a good place to start - -

    pspinformation.com/disease/...

    pspinformation.com/disease/...

    Danielle

  • I am so sorry that you dad has psp, DIfferen People have different levels,Some have a mild one Othrs havevery severe. I have PSP since July 2010 and I fal lonce in three days,I cough whenchildern are afraid,My eyes closes as if Iwas sleeo=ping but I do no sleep at all.In the night I go to bed at 9 pm , but I sleep around at 2 am, have spondylis.bities I have dia

  • The problem with psp is that it affects people in different ways and progresses at different rates. This site is useful because you can see the ways it affects people and learn from other peoples' experiences. Unfortunately because it is such a rare/newly identified condition even medical practioners cannot give much advice. Many of us learn from what we read on the site. Thankfully we have this site.

  • Sad but unfortunately PSP may be different in each person. Therefore you can't be sure of what path it will take in your relative. Read all you can but remember there are no "rules" in PSP as far as what happens, when it happens, or how long you have to live. Generally PSP doesn't kill anyone but only enable something else to take life (pneumonia, injury from fall, nutrition or inability to swallow or eat or other things). That's why time until death varys in individuals. That's my understanding.

    Jimbo

  • Sorry to hear about your Dad's diagnosis. Unfortunately, my Dad has gone downhill very rapidly since getting diagnosed officially late 2009. There are different routes the disease follows so please be optimistic. I was at the beginning. My Dad is 68, and I miss the man he used to be so very much. I'm only now starting to accept the fact that I have lost him for the most part - his PSP has now taken every part of his body away from him.

    Good luck

    Fran & family

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