New Diagnosis

Hello, I have just recieved the news my father has PSP. We thought he had stage 05 parkinson's, as he has hunched gait, mild dementia, drooling, difficulty eating but still a voracious appetite, falling over suffering infections, and now complete incontinence. He still has some mobility, but it fades after noon as he tires. Also he sleeps more than he is awake. The neurologist told him to "batten down the hatches" and prepare.

I believe he hass been manifesting symptoms for 5 years, its over 3 years since I brought him to an optomotrist to have a prism fitted to his glasses as he was struggling to read. It seems as though his symptoms plateau and then there is a sudden drop or loss of mobility or function, such as the incontinence, and it just doesnt come back.

Do these lines strike a cord with anybody from their experiences? I read on the NHS web site that he should fill out a pre-treatment agreement list, while he still has cognititave function. How does one broach this subject with a person that has just had the diagnosis?

Is there any way of telling what the timeline might be?

14 Replies

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  • Hi, sorry to hear about your father. I let the others answer your technical questions. All I can say is welcome to this site. It is the font of all knowledge about PSP. We are all carers (like me) or people that have PSP.

    I expect you have been told that PSP is very rare, it is. Nobody know about it, especially the medical profession! So contact the PSPA for all their literature, including leaflets for the professionals, so when your father needs any treatment, dentist, optician, any emergency care, you can take the leaflets with you.

    This page is used by us to vent our frustrations, anger, pain and the occasional good times, pass on knowledge, tips etc., and most of all, to realise that you are not alone in this horrible world called PSP.

    You will learn most of your knowledge here, we are at various stages along the journey, so will be able to answer your questions, help with your frustrations. Feel free to express ALL your feelings, there is nothing that will shock us, we all will have, or are going through the same as you!!!

    Lots of love

    Heady

  • Hi AJJG76

    All I can say is yes yes a thousand times yes!!

    Particularly the neurologist's comment, it really is going to be a bumpy ride . Stay on the site for a mountain of information from all of us who have don't it, been there, got the T shirt and, in some cases, still wearing it.

    Some people have made a living Will saying what THEY want, I think it is also referred to as Advanced Decision, but you would have to clarify this.

    Kind regards

    Dorothy t

  • Thanks for the welcome guys. Dorothy, I believe that is the correct term, I was up until 2am reading everything I could as I had never heard the term PSP until yesterday. I think I'm still a little shocked today, it was like a hammer blow, of this is it. What he has lost is not coming back. He was hospitalised in late January and only released from a care home last week. He has gone from accompanying my mother to the shop and assisting with cooking meals with an occasional glass of wine, to complete incontinence and barely able to stand. He is aware and still lucid, capable of conversation, but the decline was overnight literally. He stood up in the living room, slid down the wall and went ino a kind of catatonic trance. My mother and brother thought he was having a stroke, which subsequent tests revealed not to be the case, he was removed to hospital, where they put it down to flu, caused by complications of parkinsons. But the decline was overnight, and it seems now irecoverable. He tries walking in the garden in the morning this last week, on the grass , but invariably falls over.

    It seems we the hardest months are still ahead, our PSP journey starts today. I need to get a grip, and let this wave of sadness wash over me today!

  • hi i lost my reply to you so here i go again

    welcome to the site -i have PSP and am sorry yr dad has it too

    but you will eb ok and he will eb ok if you get help in now for him -social worker/carer/

    OT/ Physic /SA;Lt can all help in some way or another

    where do you live and how old is yr dad?

    lol jill

    :-)

  • AJ, Here's a word from someone who's been through PSP from beginning to end.

    1. Don't worry about what is coming next in the way of symptoms

    2. Don't worry about what "stage" he is in

    3. Live within each day not looking ahead (each day has enough in it to deal with)

    4. Pour on the love all day every day (you won't look back in regret later)

    5. Accept that you are human and not Superwoman

    6. Visit this site and others for support and answers, we are here for you.

    7. Realize that 1 and 2 above are a waste of precious time and things you can't change

    8. Accept that PSP is now in control. Not your father and certainly not you.

    9. Don't get hung up issues. Always ask "Is this a big deal?". Mostly the answer will be NO.

    10. Take care of yourself and pamper yourself with good things and outings

    Jimbo

  • i got AN LPA drawn up 2yrs ago and it will stand for when i can do nothing for myself

    (BOTH health and financial )

    plus i have an A4 sheet with my wishes on

    ie no peg feeding when the time comes

    no resuscitation if my heart stops

    no meds to prolong my life if I can no longer dc anything for myself etc etc\lol Jill

    xxx

  • Dear AJ

    Part of my story -

    I can still recall one of the days I became truly overwhelmed with my husbands diagnosis as I drove to work. I was speeding (slightly over the limit) and pulled over by police. I broke into tears, and was a blubbering mess. The poor officer- he didn't know what to do and parked my car on the verge for me. After he got out of my car he asked who the paperwork on passenger seat belonged to and I told it related to my husband's recent diagnosis. He then profusely apologized for picking me up and asked me to take a little bit more care in the future. His colleague was totally perplexed and interjected saying I should receive a heavy fine. Then the senior police officer intervened and said it was his call and spoke of how he knew of Progressive Supranuclear Palsy in detail and he wishes me the best of luck in the future for I would certainly need it.

    Why I tell you this - Is because when you less expect it - there will be people around the corner to help - it's just of matter of timing, a bit of luck and not being afraid of letting people know what is.

    And its OK to be a bit of train wreck - You're find out those you 'speak' to on this site have started off being in a bit of a daze wondering what to do, how and when...

    My thoughts - Unfortunately the timeline with PSP is unknown. Reports you may read are generally based on an "average". It varies enormously from person to person including how long symptoms takes to manifest and how long you get to enjoy the company of your loved one. The 'best' advice I've read is address the situations in advance if possible, and if not address them as soon as you can.

    Regards,

    Alana - Western Australia

    N.B. The paperwork in my car - Scattered over the seat and floor was a very large package of pamphlets sent by CURE PSP before their comprehensive website become up and running. And yes, I received a small fine which I paid well before its due date.

  • Sharon, thanks for taking the time out to reply it's much appreciated

  • HI Jillann, thanks for replying to me, you seem to have a sunny disposition, if you can do it I can to!

  • it is not easy but i am hanging on in there AND AS THEY SAY IA M GOOD !

    LOL JILL

    :-)

  • Jill, just to reinforce what AJG76 said, you are an inspiration and a comfort. I'm always grateful for your willingness to contribute to this site. Thanks, Easterncedar

  • Hi AJJG76,

    Welcome to the site, I'm sorry you have cause to join us but If you are helped by it as much as I have been, you will be relieved to have found the site.

    I can't really add to what has already been said other than try and make as many happy memories for your dad and the rest of the family as you can, while you can.

    It's going to be hard, as you have already discovered but hang in there.

    Very best wishes.

    Nanna B

  • AJ, PSP has it's highs and lows from time to time. Depends on which cells in the brain are attacked next. Of course the brain is fighting to survive so it compensates at times which may cause a level period. There are a few difficult conversations that must be had as soon as possible after diagnosis. A pre-treatment agreement is one as is final wishes for funeral arrangements. My wife accepted that it would be a difficult downhill struggle until she passed on so we didn't have a problem discussing such things. Explain that you are attempting to get things in place so that his future will flow smoothly without many bumps.

    Fatigue is a major part of PSP and not often spoken of because it isn't bad for patient and caregiver. My Sharyn would sleep from 9 to 9 then take a 3 to 4 hour nap in the day. While cognition is there you need to get as much of his personal, financial, and medical things ready and in place. Power of Attorney is important if you'll need his investment funds to help in his care. Health Care Advocate documents are also very important. You must also find out his feelings about feeding tubes. These are difficult discussions but they must be had. Jimbo

  • Hi Jim, it makes sense what you are saying. From what I have read, it's best done sooner rather than later. The neurologist told my mother, not to plan too far ahead, she needed to put plans in place now. But it is all very new still for them, having never heard of PSP until this week. I'm going to spend the weekend, I live in the UK, they live in Ireland, and I will test the waters and see how they are. I spoke to my dad on the phone today, I can hear the fear in his voice. I have been trying to be upbeat and saying what I have picked up in the short time I have been on here, one day at a time from now on Dad, one day at a time

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