Hi everyone. I want to apologise. I first came on here 3 weeks ago. So many of you replied to my first post. The love, care, compassion and support on this forum is incredible. I have read all the daily posts since but I am ashamed to say, I haven't joined in or been of any help. I feel terribly selfish that I asked for help but have given none in return. But to be honest, the more I learn about psp, I am Petrified!. It is so completely vile and shit!!! I guess I have hidden myself away. We have two daughters aged 10 and 13. I just cannot get my head around what they will be going through/ have to face. Watching their young dad deteriorate whilst they are going through school , gcse's, college/uni.

At the moment P (hubby) is able to work full time. But he often misses the last few rungs of his ladder on his descent. He loses his balance most days but no major falls recently. He limps due to stiff legs. Has a slight tremor and fatigue. Other than dropping his food down himself and missing the toilet on a daily basis, you wouldn't know he is ill!! But it's the not knowing. Will he stay at this manageable stage for some time or will I be pushing him in a wheelchair next year?,!! I guess none of us know the answer. We just have to take each day at a time. At the moment i'm not devastated for myself but for the children and him.

Anyway, sorry. I just wanted to apologise and say I am here reading every post . And I will soon be joining in and supporting you all. I just need time to adjust and accept.


ch love to you all xxxx

20 Replies

  • Heavens. No apologies necessary. You are going through a terrible time, the worst. Ask for any help any time and if someone here can give it you will get it. There is always love and sympathy available at least.

    The unpredictability of the disease makes planning nearly impossible, but that can help you stay in the moment. Cherish the good ones.

    Take care of yourself, too. Peace, ec

  • Yes don't apologies no need, you are right one day at a time is the best way, long may your husband be able to work and enjoy his young family. Sending you all a big hug. Yvonne xxxxx

  • Thank you xx

  • Thank you xx

  • Thank you xx

  • Hi,

    I have just re-read your original post and have to agree with your thoughts on the pain that your children will have to endure over the next few years. It was my first thought I had after my diagnosis but with counseling and parental love they will get through it. My children are all in their 30's, there has been tears but I think they have now come to terms with my condition and the future.

    All love to you and your family,


  • Thank you Patrick x

  • That's fine. No apology needed.

    Its terrifying.

    love, Jean x

  • Thank you Jean x

  • Dear Karibu

    There are no apologies required.

    Neither is there a time scale here. We all duck in and out as the pressure of circumstance dictates and perhaps even more our strength at times.

    I used to read some of the posts of folk further down the line than us and was scared rotten.

    There is a lot of loss with this illness as slowly our loved one fades from us. However there is a lot of opportunity to share love, hugs and some good times too. This is not a terrible harsh, fast cancer, or a phone call with news of a road traffic accident and death. This is a long love sharing goodbye if you want.

    Just give yourself time to adjust. Keep that in mind, the need to adjust, the fact that you are facing incremental loss and the bigger fact that you both have time to hug and be together.

    It is hard, but there are good sharing's to have too.



  • I have often consoled myself just so, Kevin. I have lost friends and family to the sudden brutal accident and the slow agonizing tortuous death, and I am grateful that PSP does let me hold onto my sweetheart and care for him, and that he is not for the most part in pain. Small comfort for some, and comparisons can seem to belittle the present suffering, but it works psychologically for me.

  • Thank you Kevin

  • Hi Mu, sorry to hear about your husband, having such young children as well. Your journey is going to be hard.

    Please, there is no need to apologise. The wonderful thing about this site is, unfortunately we all understand exactly what you are going through. The lovely people on here are worldwide, so there is always someone around, if you need a answer quickly. Great for those long sleepless nights.

    As for replying, don't feel guilty if you don't, some days words just don't come out. Have you noticed the "like button" at the bottom of the post. We all use this, to either acknowledge a good reply or to say, " thanks, I have read your post to me"

    My husband has finished his journey with PSP. I really don't know how I would have made it to the end, without coming on here, to rant and rave, kick and scream. All my knowledge of this evil illness, comes from the good folk on the site.

    Carry on reading, learn as much as you can. Most of all, try and live life as normally as you can. Concentrate on what your husband can do, not what he can't. Travel NOW! Don't think about tomorrow, today's challanges will need all your attention.

    Lots of love


  • Thank you Anne x

  • There will come a time that you will be on the site looking, reading and helping others. Your hubby is still in good shape so if you are able to do it, write your bucket list and make it happen. Enjoy every minute of your life, this is also true for those that are not stricken with PSP/CBD.

    There is no apology necessary here, I too just watched for a while trying get information and listen to people's experiences, yup I was a stalker.....whatever path you take to help you through you started at the best spot, there is so much love, experience and care from everyone here that at times it becomes overwhelming.


  • Thank you x

  • Absolutely no need for apologies, getting your head around the diagnosis and half scaring yourself to death reading up on PSP is almost too much to bare. You probably feel cheated that you aren't going to have the future you planned for with your growing family, our children are in their 30s but we aren't able to be the grandparents we wanted to be for our two young grandsons and its heartbreaking. Somehow, against all the odds, you find strength to get through this difficult journey and I'm sure your children will adapt to their new circumstances. I would hope that they will be offered counselling at the appropriate time so that they are able to process their thoughts and emotions. As Heady said, try to do as many things on your wish list and savour every moment you all enjoy together. Look after yourself as well as the family.

    Love Kate xxx

  • Thank you Kate x

  • Oh my dear there is no need to apologise! You are going through what we have all been through. We understand the fear and all the what if's. The big difference for most of us is that our children are already grown up. I honestly don't know how I would have coped if I had been in your position. My Grandchildren are lost now their Granddad is gone. Your children will hurt there is no doubt. All of you will.

    My advice to you is to contact your local Hospice and ask for some counselling for the family. My husband didn't want to go but I persuaded him eventually. He wanted to speak to someone alone. Having said that his counsellor didn't seem to be as good as the one I had and still have. She has been really helpful and got me through this far.

    The Hospice deals with respite later on and are key to keeping a lot of people sane! So make contact with them. Just tell them your story as you have told us and ask them can they help.

    You all have a very tough road ahead so start to get help now.

    How is your poor husband coping? I am so upset that he is climbing ladders as if he falls and breaks anything it will make life so much more difficult for all of you. My husband fell down the last three stairs and broke his arm. It was never the same and he could hardly feed himself because of it. I kept thanking our lucky stars he didn't break his hip or his back. Has your husband got to climb ladders? Can he not do something less dangerous?

    Sorry if I have made you think things you didn't want to but the worst thing for me was not being told the truth. I read it online but I really needed to talk to someone. Then I discovered this site. Thank goodness for all the kind people on here. Everyone will pick you up when you are down and will give you advice along the way. I am so desperately sorry you need this site though.

    Much love and a big hug to you.

    Marie x

  • Thank you Marie. My husbands boss has told him that he needn't go up ladders. But it's difficult because he is an electrician. He climbed up to the top of his ladder a couple of days ago and lost his confidence, so came back down. He isnt wanting to accept his illness and wants to carry on as normal. It really worries me. X

You may also like...