A very stressful day!

The day started well then Tony tried to go upstairs. Then it was all change. I was having a shower and heard several thuds, baning and then a shout. I called to Tony but got no reply and when I literally jumped out of the shower I found him in a crumpled heap on the floor at the bottom of the stairs. I quickly grabbed a towel and raced downstairs. He was conscious but very shocked and had bumped his head.When I was able to check him over I found he had a huge bruise on his hip (just another one for the collection!) and grazed knees and elbows. Thank God there weren't any broken bones, but he was really shocked (me too) and for the remainder of today he has been really quiet and very, very wobbly on his feet. He uses a 3-wheel walker in the house but his confidence has been shaken even further by today's events. He gets really upset following his falls and always says he is sorry. I try really hard to convince him that it's not his fault but the PSP, but he worries that he is a "nuisance". I HATE, HATE, HATE PSP and what this dreadful illness has done to us both. My lovely husband is no longer the man he was and our retirement has been completely thwarted by this very cruel and debilitating condition. Once again I say...I HATE, HATE, HATE PSP..............

I pray to God each and every day that a cure will one day be found.

SuzieQ

15 Replies

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  • difficult to find words of comfort Suzie, You know that thoughts are with you and Tony. PSP is taking its toll on you both. I had intended getting a stair lift put in the house, but it was pointed out to me how my husband couldn't make it by himself to the bottom of the stairs and i could not mange to get him on and off the lift.PSP thwarts us at every move and like you, hope so much that a cure can be found.

  • Hi Suzie

    Luigi contracted PSP when he was 59. All our plans for our retirement (which were simple) had to be discarded because of this disease. During the seven years of his illness I, did my best to keep things as normal as possible. We moved to a flat so there were no problems with stairs but he had falls just about every day because he tried to do as much as possible by himself. He was always very dazed and quiet after a fall. Generally when we fall it's because we trip over something but they have no idea that they are going to fall or why they fall. They do not see the dangers. As time went on he could no longer wash or dress himself etc. and got extremely depressed about it. I bought him a three wheeled walker so that we could go for walks etc. but as his falls got worse we were advised to use a wheelchair. When it was delivered he said, "This is the beginning of the end". I told him it wasn't and encouraged him to use the wheelchair at home but I continued to take him out for a drive and walks with the walker. This gave some semblance of normality to our daily lives.

    I remember the kindly Neurologist who finally diagnosed him said, (after 2 years and 3 Neurologists) "This is not one person's disease, it's a disease that affects two people. How right he was. I still miss him dreadfully.

    We now have a new littler grandson whom he will never see. My consolation is that he is at peace and suffers no more now.

    Warm regards

    Lina

  • Hello Suzie

    Oh dear how I remember what you are going through. This PSP really is a bummer. I bet you are feeling that you can't leave Tony for a minute. Sadly, it looks like you can't. I bet it doesn't matter how many times you tell him "Stay there, don't move, I won't be a minute" he'll be up and out of that chair as soon as you leave the room!

    We had separate rooms at night and often I would hear Richard fall out of bed or in the bathroom. Despite me telling him to 'yell out' if he needed to 'go' he would still want to stumble to the bathroom by himself. We had to laugh sometimes though, like the time I found him doubled up and STUCK - in the bath! He had tried to turn to sit on the loo, but had fallen backwards.There were more serious falls of course which ended with him having numerous stitches or he had nasty bruises the size of dinner plates.

    Eventually, I realised we needed help so I contacted his Social Worker and she arranged a place at a Day Centre for him. We called it the The Boys Club - even though it had a mixed clientele. It gave us both something to look forward to. Richard enjoyed the company and I loved the freedom to please myself for a few hours.

    On a practical level has Tony got double handrails on the stairs? Get in touch with your Social Worker or if he has one, his Occupational Therapist. It was our OT who arranged for a carpenter to fit double rails on our stairs. Later this same lady got us alarm mattresses that went under both his bed and his armchair. As soon as he lifted his bottom off either, a recorded message would tell him "PLEASE SIT DOWN!...PLEASE SIT DOWN!" and at the same time a bleeper would go off to alert me he was on his feet.

    You were having a bad day yesterday, I know, but it's amazing Suzie we all seem to adapt to the different stages and situations as they arise. We all find our ways of managing. Don't panic that's the secret and if you really want to chat with someone who understands, call your PSP Specialist Nurse. She is there to help, offer advice and even be a listening ear if you feel like swearing or having a good cry.

    Never feel you are alone Suzie, we are all here to listen and help if we can.

    Love, Maggie x

  • Oh Suzie, a stressful day indeed. As usual, Maggie has great ideas- make sure you get all the help you can. PSP is too much for you and Tony to manage yourselves.

    I hope today is a better day

    Fiona x

  • Hi Everyone.

    Thank you all so much for your kind words and advice. It is really appreciated and also a tremendous help to know there are others who understand exactly how this horrid disease affects both the sufferer and the carer.

    Tony is extremely bruised and sore today but still wanted to go off to the Day Centre which he attends every Thursday. I took the precaution of advising the staff there how "wobbly" he is, but they have previously had experience of PSP and were very reassuring that he would be well looked after.

    Maggie's comments are so accurate. He appears to take on board what I say about remaining seated, but 2 seconds after I've said it, he's done just the opposite, which usually results in a stumble at the least, or worse still, another fall. We have had a new staircase installed and the OT who is assigned to us has been really helpful in suggesting and arranging the provision of various pieces of equipment.

    I feel exhausted today, which I am putting down to the emotional stress from yesterday, but now I have to go up a gear again as he is due home in a short while and then is's "off we go again"..........

    Thank you everyone - you are all very, very kind.

    Love to you all and God Bless.....................SuzieQ xx

  • Hi SuzieQ.its so strange seeing you discribe what could be a day and night in my home, the promises not to stand up unaided,five minutes later its forgotten,the fractured spine when AJ fell at the bottom of the AJ is in a nursinghome now, but just this evening he wanted to stand up I think he needed the loo, but as he held onto me his legs buckled and he pulled me to the floor with him, it was good to have someone on hand to help,but I`ve returned home feeling guilty that I`ve had to leave him in someone elses care, My hip is hurting and I need a bl***y good cry, we seem to go from one heartbreaking set of curcumstances to another, its such a struggle to stay anything like posative, but when you love someone you have to do a lot of pretending. My heart goes out to you, Elli xx

  • Hi Suzie,

    A bad day for you both, it is no wonder that you both felt shaky afterwards. I hope you and Tony are recovering now.

    Take care of yourself

    hmfsli

  • Hi Suzie

    Bless you, like everyone here I know how you feel and what you are going through. My nightmare ended in April 2010 when Ray passed at age 58, I now try to support where I can those still coping with this dreadful condition.

    At least we all understand here and you can sound offand we know how you feel, just dont be afraid to ask for help or sound off.

    God Bless, thinking of you.

    Jen XXXX

  • Hi Suzie

    What a terrible day for you and Tony. I don't know what else to say that hasn't been said already but I am thinking of you both and my heart goes out to you. I hope you are both getting over the shock although I know it takes a bit of time

    As always a hug from me to both of you

    Love

    Lesley x

  • Suzie, I can so feel your frustration and pain! I had tears in my eyes when I read your note. It is truly awful and I hate to say it, but it just gets more heart breaking.

    One of the things I did with Jeff everyday was focus on the little joys or successes we had. If he managed to get through a day, fall free, we would celebrate it at dinner that evening. If he walked a couple steps with his cane instead of walker, that was a joy. If he didn't get totally exhausted by just getting to the breakfast table, that was a success.

    Jeff always apologized too and got quite emotional and blue. I just kept telling him that he couldn't help it and that we would just have to adjust when the disease took another piece of his independence. I don't know if it helped but it sure made it easier to get through some days!

  • Hi everyone.

    You are all so very kind to take th time and trouble to give support when others have a tough time. Most of you have your own struggles and I appreciate that sometimes it isn't easy to find the strength to help others. I feel that the big PSP "family" on here are special people who have the very biggest hearts. Thank you all once again. Your support and best wishes are truly appreciated.

    Love......................SuzieQ xxx

  • dear dear Suzie, My husband of 55 years (5 with PSP) had to be placed in the care of a nursing home after his last bout of pneumonia. He has fallen in the home during the night when he tries to get out of bed to toilet and I have sat with him in hospital whilst they stitch his head (8 times). I did everything at home to help him , even replaced the bathroom by a wet room , well worth the cost Suzie.

    I spend 4 hours each day at the Nursing home because although my husband is unable to speak or write he understands every single word I say.

    I am right there with you in my prayers Suzie and I hope you are in constant touch with your Specialist Nurse|(mine is wonderful|) and manage to attend the PSP meetings. >I was also fortunate to have an excellent Occupational Therapist who really understood PSP and our needs. Although at times you feel as though nobody understands Suzie there are those of us out here praying that you can find the strength to cope.

    Jean Welch

  • Thank you, Jean, Your words are very comforting and I appreciate you taking the time and trouble to comment.

    Take care...............SuzieQ xx

  • Hi Suzie

    How aweful for you both. It sounds as though you are both at the end of your tether with this dreadful illness. Please feel free to give me a ring whenever you want to even just to vent off. I know you have in the past. Could I also suggest that you have another chat with your OT about the stairs. As you will appreciate stairs can be very dangerous for people with PSP and I am concerned that your husband has had a nasty fall on the stairs this time. If you would like to ring me we could have a talk about this and Im sure the OT will also have some useful suggestions.

  • Hi Suzie

    I hope this finds you and your hubby feeling better. As is my practise at the moment, I don't look everyday at this site and hence missed your message. My heart goes out to you both. I felt a little relief when I saw your HATE HATE PSP. I had a scream yesterday and unfortunately it was my hubby who was on the receiving end and this shouldn't be.

    Like you, PSP has robbed the family of a good man, energetic and fun to be with, a doer. Our retirement never even got started. Now life is unpredictable, hazardous and frustrating. Occasionally my old hubby makes an appearance and as my daughter says " isn't wonderful when we hear dad again.

    I must stop here before I shed more tears as a result of PSP.

    Love to you and your hubby and roll on the day PSP can be cured.

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