Hi everyone, I'm 29 years old and recently found out my mam to has psp, after them wrongly diagnosing her with a stroke 2 and a half years ago I just knew it couldnt be a stroke as she was slowly getting worse.. This diagnosis has broken my heart, I am her main carer aswell as having a 10year old son and working part time... She is slowly getting worse her mobility is getting poor and her swollowing which really frightens me but we do have an appointment with neuro physio on speach therapy next week.. I know she is just going to get worse and I am really struggling just writing this as I can't bare to think about the future... She is being so strong she has never once said why her all she cares about Is that her children are ok, I just wish there was something i could do

10 Replies

  • Hi Maxine, sorry to hear about your Mum, her story sound much like my husbands. He had a silent stroke, so I put all his problems on to that. It was only after a day of some rather nasty falls, did we go back to the doctor, that's when PSP was diagnosed!

    I'm afraid there is nothing much you can do. Do get her to the speech therapist and a good physio. S is so much better, having two sessions of physio a week, his movement has really improved.

    You have done the most important thing, that's find this site! We are all fellow carers or sufferers of this dreadful disease. Everything I know about PSP, came from here. Everyone supports each other, so feel free to rant, rave, cry any thing you need to do, we have all been there and will do our best to get you through. People will advise you on any questions you need answering. Because this is a worldwide site, somebody is always on it 24/7, so help is available whenever you need it! We will tell it as it is, no frills, no punches! We all will know how you are feeling, most times you will get sympathy, pat on the head, sometimes a push in the right direction, to get you back on track. There is nothing you say will shock us, we all get very angry at times, very upset and come here, where everyone understands!!!

    The very first and probably most important lesson to learn is to take one day at a time. We all preach it, some days even achieve it. It is very hard, but today will have enough problems, worries and challenges to get through, without even starting on tomorrow's!!!

    I know you feel very alone and frightened at the moment, you are not alone, we are all here and there is some help out there, don't know which country you are in. As for the fear, yes it is very daunting, what the future is going to bring, that's why you MUST BE positive today. It is the only way to get through, your Mum will need you and having a positive attitude is the best way to help her with this journey.

    Keep on this site and remember one day at a time!

    Lots of love


  • Thank you heady xxx

  • Welcome to this site Maxine. You are probably still in shock from the diagnosis so hopefully things may not seem quite so bad when you get your head round things. You know how things will progress but as Heady said, take one day at a time. Do as many enjoyable things as you can to create good memories and get as much help as is offered. You wish there was something you could are doing it; being there for her, loving her and making her as happy and contented as is possible. My husband can do very little now but loves seeing our grandsons (2,4 and 7). The other day the 4 year old rushed in with a funny T shirt on and said he wanted to show grandad as he likes it when grandad laughs. He did laugh his funny humming laugh and it brightened our day.

    Take care of yourself.

    Nanna B

  • hi maxine

    i agree with the 2 re[plies above - this sit e is brilliant for carers and sufferers alike - I hav ePSP` and since dxd 3+ yrs ago am dsill here

    lol jill


  • Thank you.. I will try and remain strong, I also have brothers and a sister who I know are also heartbroken, the youngest been 19... We have each other and will carry on staying positive and doing nice things with mam whilst we still can, thanks again for all your kind words and support.. I'm happy I found this site been reading other peoples stories on here and it's really helped xxx

  • And Jill I have read through some of your posts and comments on others... You are a little inspiration :) xxx

  • And Jill I have read through some of your posts and comments on others... You are a little inspiration :) xxx

  • Dear Maxine12

    Welcome to the site, I so agree with Heady and NannaB and will only add, ask for and accept ALL the help you can, from your GP, social services, Carers UK, anyone. You will not and should not travel this road alone, it will be a long and bumpy ride.

    And from a very personal position, I will also say, do not go chasing elusive goals or rainbows, use all your energies into making your mam comfortable and cared for and cherish her, which I am sure you and your family are doing right now.

    Kind regards

    Dorothy T

  • Hi Maxine, I know exactly how you feel. My mam was the strongest woman I knew and I am finding it really hard to cope watching this disease eat her away.

    what I find the worst is the uselessness i feel as there is nothing I can do to really help her. I have just found this forum so hopefully talking to people who truly understand what we're going through will help us be able to help us deal what is happening with our beautiful mums. Good luck ☺

  • Hi DenzP sorry to hear about your mam too. I have been using this site for about a year now and it really does help, if you need any advice or just need to have a moan all these lovely people do listen to you. It's such a awful illness but you learn to take each day as it comes, I dread to think of the future so just take the moment. Good luck to you too, give your lovely mum a hug from me 😊xx

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