Hi there new to all this

My daughter has urged /told /ordered me to come on here and get to know people - so here I am . My wife was recently diagnosed withPSP but I think it has been coming on for a two or three years and is now accelerating especially in the cognitive /dementia and mobility areas - finding it all hard to deal with as everyone else is . Hard to accept what is happening and rather hope that tomorrow morning it will all have gone away ! Still I will be woken by the baby alarm on the landing at some ungodly hour by Breakfast TV and another day will kick off and you just hope you will get through it . Anyway I will try to join in and look forward to hearing from you .(have started looking for my spade )

10 Replies

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  • Hi Georgepa

    Sorry to hear about your wife's diagnosis, and the fact this (at your daughter's urgings) has caused you to come to this site. Many on this forum have travelled and completed the "PSP/CBD" road, while many others are still travelling (like myself). I know you'll benefit from sharing with us all, and I'm sure you'll be advised by others to express whatever you feel and we'll understand!

    This site has brought together both sufferers and carers from many parts of the globe. I'm in Australia, but most are in the UK.

    Please use the search box for any past "subjects'" and the forum's responses, or just ask away with any worries or queries or experiences you may have as you continue to care for your dear wife. This site is great for "venting"!

    Please take care as you care for your loved one.

    T.

  • Hi, I'm also in Australia - are there sites like this one for Australians?

  • There is a PSP Australia site which gives information and identifies a few support groups (mainly in Victoria). Most support groups act under Parkinson's Australia. The latter should be contacted for further information. However, there are no open live forums like this one.

    Hope this helps ( with such a relatively small population, there may only be about 1500 PSP sufferers identified in Australia, and only about 150 in Western Australia where I live based on the prevalence of about 6 cases per 100,000 population).

    Cheers

    T.

  • Hi Georgepa,

    I am sorry to hear of your wife's diagnosis and I am sure we have all wished to wake up and find it was all a horrible dream.

    As Strelley said this is a great site to share with people who truly understand and won't judge.

    I hope your daughter has also urged you to get in touch with the PSP Association and register with them. They have loads of valuable information packs, leaflets and cards for you and those you meet along the way. If you are in the UK they also can put you in touch with a Specialist Care Advisor who can make sure you get the right levels of support along this journey.

    In the meantime there are people here who understand and care how you are are both doing, keep in touch and take care of yourselves.

    A

  • Hi Georgepa, welcome to the community but sorry you have had cause to join. However you feel, I am sure we have all felt the same. Sometimes I can laugh things off and find the most horrendous situations funny but there are times, especially when I'm tired when I say to myself, I can't do this anymore. Of course, like everyone else in this situation, we do carry on and chatting here does help a lot. Friends and family think they know what we are going through but only those who are caring really know. I'm pleased your daughter persuaded you to join and hope it will make this horrible journey a tad bit easier.

    Best wishes.

    Nanna B

  • There is nothing you can ask however embarrassing it might be that none of us are dealing with and maybe be able to help with .

  • Hi Georgepa

    Welcome to the group - I'm a newbie too and I can tell you it's been a great support. And yes, nothing is too embarrassing to ask! And even if you just want to have a rant and get it all out of your system - there will be a virtual shoulder to lean on. Unlike all the nastiness that goes on on other internet forums, I'm so happy this is a very respectful and often very funny (oh yes! you've gotta have a laugh sometimes!) community. (I'm in Belgium btw - used to live in the UK, and then the US - but have come back to help out my dad (82) who has PSP with Parkinsonism and my carer-mum (79) during their journey. )

  • Welcome to the group/ I wrote a long reply that I think my computer ate. So I want to once again encourage you to keeping reading and writing on here. It is a friendly place to ask questions, vent feelings, get tips, and most importantly to not feel so very alone with this. My husband has PSP, which his father died of when he was 73. My husband in 72, I am 68 and I moved us all (99 year old Dad, husband and dogs and cats to Costa Rica where we could afford to live and have help. I am sorry that you need membership in such a group as us, but after awhile you get more or less used to a new normal and the feelings become familiar. Also if it is any consolation the "research" says men seem to handle caregiving with somewhat less stress. "Hum?" Please keep writing and if you have any questions at all write.

    I too find this site a bit confusing. But I just keep writing and presses buttons (are they called buttons? that doesn't sound quite right). Good luck,

    Jill

  • Sorry to hear about your wife. My father past away in Feb of this year and I still think of him and miss him. Enjoy her, however you see fit.

  • Hi. I'm new too, my 79 year old Daddy was dx with PSP very recently, but he's been falling over backwards without catching himself for a few YEARS, maybe other symptoms too but mainly lots of falls. It's a miracle he's lived through that! I pray for us all who've found this forum. I'm in the US by the way, East coast. I'm not Daddy's primary caregiver, that would be his wife of almost 30 years, and she's a couple years younger than me. PSP is so hard. I cry often about my Dad but I see the validity of what I've read.. to stay in the present, don't focus on what's to come, IF it's to come at all because nobody has every single symptom.

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