First post

Hi all my name Luke I'm 24 and have been on here for only a few months been reading all your post and comments and finding so much of it helpful. thought it would be good to post and say hello to you all and become part of this community.

My mum has PSP and we are in about the 3 year of her diagnosis, my dad and myself look after her. This has been a very difficult seeing how the disease is taking over. it makes me very sad but frustrated when she struggles with the regular day to day tasks

It will be lovely to speak with others in the forum and read advice and people stories how things have worked well and not so well.

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34 Replies

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  • Welcome to this wonderful group of people and ideas, of this terrible disease. Mary B.

  • Welcome to this site. It is a fountain of knowledge and so much advice from wonderful people with or without this horrible disease so you get both sides of the coin. Don't worry about asking anything even if you think it's not relevant. There is always someone close to hand that can offer advice. And good if you want to rant.

  • Welcome. Sorry your family is going through this but hopefully this forum will help. Everyone here is super supportive.

  • Hi there Luke and welcome to this wonderful website.... Now, I do have a query. Because of the time of day in which you have posted your comments, I am querying that you live somewhere in the Southern Hemisphere and I am questioning is it Aussie....or maybe are you from Kiwiland???????? If you are indeed from either of these countries, please know that even though the majority of people who comment on this site are either American or English, there are also a few of us from the southern regions!!!

    😐 sorry I didn't mean to take up so much of the reading space!!!!!!!!!!!!

    Anyway Luke, welcome. Cheers, Bindi

  • Hi there Bindileech I'm from THE UK just a late night post

    Thank you all for your kind welcome

  • Hi Luke.... I am glad (in a way) that you are from the U.K. It makes me feel nearer to you!! I have also been diagnosed with PSP recently and feel very

    isolated. I hope we can keep in touch. What age is your mum?

    We welcome you to this site.

  • Mum's 64

  • Oh dear that is quite young!! Keep cheerful and think of yourself!!

  • Hi Luke,

    Welcome! How old is your Mum? Have you got a local PSP support group? I'm in Shropshire and I had a friend who had PSP who was just 40 when he died a few months ago. We found the support groups helpful too.

    Alison

  • Mum's in her mid 60 I'm from greater London Kent. no we haven't been along to a PSP support group not sure where and when our local group meet. I should have a look into it

  • Hi Luke,

    PSPA has a local support Group in Kent which meets regularly. You can get details from their website

    Cheers

    Simon

  • Hi Luke and welcome to the site. There is a lovely support group in Kent that meets every couple of months north of Sevenoaks, so not too far from you I am guessing. See the PSPA website events page for the details. The next one is a Christmas party. I know you and your mum and dad would be very welcome.

    My husband died last month but a I am still here for now - can't quite tear myself away from all the wonderful friends on this site!

    Vicki

  • I'm in Shropshire. I've only made it to one of the support groups so far over in Shrewsbury.

  • Hi! They don't happen very often, but we kind of like them! Hope to see you at another one. 😀

  • Think it was July that I made it to. Yes hope to see you at one.

  • Hi luke welcome to this site. A wonderful place for information and advice on any aspect of this horrible disease. My hubby has PSP, a few more years than your mum, and there's always someone on here who has seen or experienced every kind of oddity this disease throws up because although there seems to be a core of similar symptoms there are many others that not everyone gets.

    We are in harrow and I go to meetings in london. If your mum can't go then you or your dad should. the PSPA will tell you where your nearest meeting is held. You will meet others In the same boat and ideas about where and how to get help. Give it a go. All the best to you and your family. Marie

  • Hi Luke Welcome to this site, please get help for you and your Dad. It will help to express your feelings here and see the different problems that each person has with PSP. I live in Ireland and my husband has PSP and I have a daughter of about your age who helps me but its so sad to see her worrying about her Dad. Luke best of luck and keep in touch with this site. I am sure someone in UK will reply to you and give you details of where to contact. xx

  • Hi Luke....24 seems ever so young to be dealing with this...you poor thing & your poor folks. We will all help however we can. Stay in touch x

  • Hi Luke. Thanks for saying Hi.

    X

  • Hi Luke, my son lives at home with us, my husband has had CBD for 10 years, it is hard to take the changes and mood swings, remember, your mum is always there no matter what this horrible disease puts out there!!

    Get referred to the local hospice, they are fantastic and have a day centre, our occupational therapist is also invaluable

    Good luck and keep posting

    Janet

  • Welcome Luke.Hope you find this site useful,no doubt you will.I care for my hubby who is 59 and is now in the later stages.Our younger daughter is 23 and is a nurse but lives 90 miles away.She tries to see her dad every 3 to 4 weeks and check up on us both.Our older daughter is 26.They have seen 3 years of mis diagnosis and illness and and the last 3 years at least we have known what has been wrong.Its cruel through and through but many people are involved now,so help is always there if needed.Dont be scared to ask for help,and look after yourself which is soooo important x

  • Hello Luke and welcome I'm very sorry to hear about your mum, it's all so bloody unfair! The amount of newbies is increasing fast which makes me wonder if Psp and CBD are increasing.....I hope I'm wrong!!

    Please ask anything at all and scream whenever you want, we will always try and help!

    Tell us more, are you in the uk, what help are you receiving etc

    Here's a hug for you all x

  • Satt2015. Like you I wondered about the amount of new people. I certainly hope it's not increasing. However maybe they are getting better at diagnosing it? Let's hope so?

    Marie

  • Welcome. Its good to have somewhere to share thoughts.

    My husband has PSP and we go to the Kent meetings when we can.

    As Vicki said the Xmas Party is 7th Dec and I know you would be welcome.

    Love, Jean x

  • Hi Luke welcome to our family, we are all going down this horrible path, all at different stages, we must love your mum very much. My husband has PSP diagnosed in 2014, but we think he is 5-6 years on the rocky road. Hope you will keep posting this site has helped me so much to carry on, it has been so hard at times, everyone on this site are always there with kind words, helping you with any problems, never judging you. Big hugs Yvonne x

  • Welcome Luke.

    Sorry you`ve had to join but we will all be here to offer advice and support.

  • welcome to the fold luke we could do with a few young ones on here it matey it might livern things up a bit ]]]]]]]] see yer luke skywalker take care glad tp have you aboard]]]]]]] peter jones q.l.d. Australia pp sufferer regards to your mum tell her to hang in there ,matey

  • Hi Luke. So sad you are dealing with this at such a young age. My husband has CBD and our 28 year old daughter is still at home. She finds it hard to watch her 69 year old Dad being supported like an old man. He was always making mischief, keeping himself fit and was very intelligent. However he still has a sense of humour that lifts all our spirits. I often find with this forum that someone else is dealing with a problem that I'm struggling with and it's great to pick up their advice. Your mum and dad sre lucky to still have you around for support.

  • Hi Luke, welcome to this great site I think we all find it invaluable. As one post said try to get the hospice involved they are wonderful at supporting the sufferer and carers. I have just finished an extended course of counselling at the local hospice and it helped me to understand my thoughts and feelings whilst going through the shock of the diagnoses of my husband with PSP. Some thoughts were very dark and the sense of isolation were very profound and the counselling helped me to realise that this is quite normal when dealing with a very cruel progressive disease. I wish you all well in helping your mum and dad but remember to take time for yourself, you are very young and need to have some normality in your life.

    Love Kate xx

  • Welcome to this community Luke. You'll find plenty of support and helpful advice here.

  • hey Luke - a warm welcome - and sorry for the reason why you are here. This forum has helped with the nitty gritty sometimes graphic or emotional advice, but also to just rant and rave, cry or tell your story. We have some real poets on here too, despite everything. I didn't read through all the replies you got and it's probably already in there, try and look through all the daily hassle you will unfortunately encounter, and enjoy the good days/moments, the smile you can undoubtedly still bring to your mum's face. We're here for you.

    All my best,

    Lieve

  • Welcome Luke I am so sorry to hear of your mums diagnosis. This site will hopefully be a place you can turn to when times are tough or when you just have some questions to ask. Everyone here is so helpful so again welcome to our little community. Take care x

  • LEARN SIGN LAUNGAGE VERY IMPORTANT OR MAKE UP YOUR OWN FOR THINGS LIKE TV REMOTE OR NEED TO USE THE BATHROOM IT WILL MAKE THINGS MUCH EASIER

  • Hi Luke

    Welcome sorry to hear about your mum

    My mum is 69 now was diagnosed a year ago but probably about 4 years in now since she started with her problems

    It's a tough road but this is a great group

    Take care

    Jackie

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