Hi Im new

Hi everyone

I was told about this site yesterday by my mums doctor, She has CBD & has had it since 2004, Im struggling to cope now as she has gone down hill over th past year so fast, i went away last week for a week & when i came back she had deleveloped the struggling to swallow process & keeps choking she is in a care home & can no longer feed herself or walk, i dont think she has long left & im scared i hate visiting her even though i have to thanks for listening xx

22 Replies

  • dear steph2470steph

    I can relate to so much you say, my husband had PSP for nearly 8 years before he died in July this year.

    It is a very hard and sometimes lonely road through CBD or PSP and the reason for so much of this is because very few people understand or even know anything about the conditions, I include ALL medicos in this.

    I found this site in 2012 and was so thankful I did because it allowed me to rant and vent my feelings and I was always supported with kindness, camaraderie

    and love when I really needed and I shall always be grateful to everyone for that.

    Keep on the site

    Kind regards

    Dorothy t

  • Welcome to the site. Yes it is hard to watch a loved one suffer but try and remember all the good times that you have shared and as much as you are upset about the situation be brave for your mum try the smile a day when you visit her. Big hugs to you. Janexx

  • Welcome to the site. It's a shame your mum's doctor didn't tell you about this site earlier but it was I who told our own GP about it so he may have only just found out about it himself. I'm sorry your mum has gone down hill quickly. I think you do notice things more if you haven't seen someone for a week or two. My own sons say how their dad has changed every time they see him although 2 see him weekly.

    Just remember that your mum can probably hear and understand everything you say even if she doesn't respond so try and tell her interesting things you have been doing or something funny that's happened.

    It's hard as you know but we are all here to support, pray, hug from a distance so I send you a big hug now.

    Best wishes

    Nanna B

  • Thank you everyone for your kind words of support

    Steph xx

  • Hi Steph,

    My mum died this week and the symptoms are similar. It may be harsh but in your mind, you may need to prepare for her death so it isn't a shock to you when it happens.

    I know you say you don't like visiting her but visit her every spare moment you have and treat it like it's her last. Think of places to take her, bring photos, do as much as you can to make her (and you) smile-you will really appreciate it later on.

    People with these illnesses are amazing people-it's really important that carers and family make their lives great!

    Next time you visit her, say that Matt from Coventry in the UK is thinking of her!

  • hi steph

    i agree with what has been said already 9 - i havE PSP the close relation to CBD and am still here nearly 4 year since dxd

    it si a pity you did not find the site earlier but better lat e than never

    you will have lots fd support fm every one here

    lol Jill

    hugs and xx to you

  • i forgot to say "welcome to the site"

    where in the world are you ??

    love JIll

  • Thanks Jill im in Cambridge UK

  • Hi there,sorry to hear your having a tough time. My dad has had cbd for 10 years so I know what your going through.x

  • So sorry to hear about your mum, but be courageous and remember no matter how distressed you are she will feel worse and one of her few pleasures in life will be to hold your hand and see your face. go often and you will have no regrets.

  • Dear steph2470steph,

    Very sorry to learn of the difficult time you and your mum are having. You mention your mum is in a care home and I just wondered whether or not the time has come for a move to a nursing home, if this is possible. The kitchen and staff in a nursing home may/should be better equipped to deal with your mums rapidly changing condition. I'm sorry if this suggestion only adds to your current problems but I know an elderly aunt was made much more comfortable by such a move. It was not that the care home was not a very good one but simply that it served a different set of needs. The battle for assisted funding was eventually successful but not easy.

    Best wishes and kindest regards, Jerry.






  • Welcome to this site. I found it a few years ago after being diagnosed with PSP. The knowledgeable input from various members, and even more, the support and human connections that are developed between members is priceless.

    Please stick with it for awhile; the benefits are worth it. I am sorry to hear about your Mum. I know it must be hard and at times, overwhelming.

    Be sure to take good care of yourself.

    Judy Johnson



  • this site is very helpful. welcome to you. hope you find it helpful too I just wanted to welcome you to the website

  • Oh yes everyone this site is such a comfort.The rest of the people who have not experienced try to suggest ideas but unless you are in this situation you cannot understand all the varied problems with these diseases.Talking is very tiring for my husband now thank goodness for thumb signs,listening is tiring too but a neighbour calling in with new potatoes and runner beans was a bright spot in the day,she didn't even stop for a cuppa!The gesture was enough.Two thumbs proved it! I think medics worry about the internet and so if they haven't come on this site they might be cautious I have told my doctor how useful this site is,as yet he only has my husband with psp but I hope if he gets anyone else he will recommend it.Love to you all!P

  • Hi, my Dad has had CBD for five years now as went into a nursing home two years as the illness ravaged his body so quickly and now he has a feeding tube and can hardly speak to me .... I also find it painful to see him and the fact nobody even understands the disease not even doctors who come out to him. All I can say is we just have to treasure the time we have with them and live for that one smile or smile in the eyes as they are the ones enduring this terrible illness. I feel your pain though so much as I struggle every day since dad lost his speech. I feel like I'm grieving for his lost personality even though he's still there it's so hard to explsin to people.

    My thoughts and love go out to you so much and I know exactly how you feel right now

    Sarah ( Bedfordshire)

  • That's exactly how I feel. You're grieving for every bit of personality that is lost. I understand xxx

  • thank you once again everyone for the support I cant move my mum out of the home she is in as my dad is also in there he has brain damage & its the first time they have been together in 4 years so they want to spend what time they have left together, life can be so cruel at times thank you all once again

    Steph (Cambridgeshire)

  • It is very scary, but if you don't visit you might regret it later. When I leave mums house I quite often cry all the way home, but I try not to let her see I'm upset while I'm there. Take care and be strong xx

  • Welcome Steph, from Downham Market - not too far from you. Where is the home your parents are in? Hopefully it is a comfort for them to be together.

    If you can get to Norwich, there is a support group which meets at Stoke Holy Cross every six weeks or so - next meeting Sat. 18th October 10.30 am - a mix of those on the journey, carers and ex-carers like me.

    Covers both PSP and CBD and a good place, like this site, to ask questions.

    Thinking of you,


  • Hi Mo

    Thanks for the reply they are both in Askham Court doddington, Shame Norwich is a bit far for me to travel, it is a comfort them being together so they can live at their final days together xx

  • Know Doddington from when I was working - seems a lifetime away now.

    There is a support group at Cambridge, if that's any easier. According to the PSPA list, meets at Trumpington Village Hall, 2.30-4.30 - 4 Oct, 6 Dec. - looks like first Sat. every 2 months.


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