I felt pretty good this morning, decided to do a bit of cleaning as getting a bit neglected, I started with the kitchen, not too bad, back went into spasm again but after a bit of a rest was ok. then decided to clean down the leather chair as looking a bit grubby. All going well so went into the toilet, the outside bowl needed cleaning, so what did i do, i knelt down on the floor because i couldn't reach. Well that was it, i forgot that once on the floor, especially in a small space, i am stranded!!! Hubby was in bed unwell, so i couln't call for him.
I had to eventually work my self backwards out into the hall and work my way on my bottom into the lounge to the settee, where i managed to leaver my way up holding on to it. Never again, i felt such a fool!!! I hate this decease, they say live for today but you forget you can't live a normal life, you have to rely on others. I miss being able to do my own cleaning, as the saying goes, if you want a job done properly, do it yourself!! I can laugh at myself now, but frustrating at the time. Never mind, will sit in the sun and enjoy my coffee instead lol Trisha xx
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tisha1953
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If it makes you feel any better, you are not alone. My husband has been on a roll this past week. He must have spring fever! He's been cleaning and organizing in the garage, and has had many falls, he needs help getting up every time. Nothing stopped him until last night, he fell and skinned his head and bruised, maybe even cracked a rib. It must be so hard to not be able to do all the things that have always been so routine. It's not stupid, it's just second nature.
Joan
I believe you have CBD (sister disease to PSP from which my wife suffers). It must be absolutely frustrating for you to find that simple housework can end with the situation you described. There are obviously moments in the early stages of these conditions when one actually "feels" well enough to tackle things around the home, only to find the brain circuits let us down.
My wife used to be SO active (we have 4 children and 10 grandchildren) and now after just 3-4 years of the beginning of symptoms she cannot walk (only shuffles a few steps to transfer from wheelchair to other places like recliner, toilet, shower or bed). It's devastating and the other symptoms are worsening.
I seem to be talking more about me than your situation, but I was prompted by your remark "but you forget you cannot live a normal life". This is so true, so I was incensed when I read a phrase on the Italian PSPfocus site "....the first good news is that you can live a normal and dignified life even with PSP/CBD/MSA".
I may be on my own here, and just venting, but I find that statement so inappropriate for a PSP/CBD/MSA information site.
Now I have that off my chest, one interesting thing has happened to me as a bloke who cares for his wife 24/7, I have learnt to do more than one thing at once and caught up with all you ladies who always knew how to perform multiple tasks.
So take care, and sit in the sun more often with your coffee (not sure if you are in the UK, but if so, you won't see the sun too often - sorry, I was born in UK but now live in sunny Perth, Australia).
I totally agree with your comments about the statement on the PSP Focus website and have just emailled them to request it is changed immediately.The text of my email is copied below
Hi
I live in the UK and have just found you website for the 1st time. My wife has PSP and was diagnosed in 2005.We have been members of PSPA in the UK and used their website etc regularly.
Your site is obviously in the early stages of development and its great that something is being done in Italy to help and inform people about this illness.
PSP is a horrible debillitating illness and I think the statement on your home page that "the first good news is that you can live a normal and dignified life even with the PSP / CBD / MSA." is wrong and should be removed.
Although PSP affects individuals in different ways it is only in the very early stages that life may be considered as close to normal. As the illness progresses, sometimes fast, sometimes slowly, its impact is devastating on both the person with PSP and family. Many people eventually become trapped in a body that ceases to function, with loss of the ability to walk,talk,see or swallow and require high levels of care at home or indeed in a Nursing home.
To suggest "you can live a normal and dignified life" is totally misleading and creates a false impression and false hope.
I would ask that you please review and change your website immediately.
As a CBD sufferer i don't think i want to read about how things will be in the future, i want to live today to the full, you have to be positive and try to forget about the future, i think it is harder for the carers to watch the deterioration of their loved one. Remember they are your partner, not just someone you care for, we still like our cuddles and affection, that goes for parents too. We need more positive reading, not all negative. Remember joy is the best medicine.
I know it can be harder for some, i also have 'bad days' when i feel sorry for myself and miss my previous life.
Hi Shasha, i think we should give other suffers support but it seems to be mostly carers on this site that write about their feelings. They tend to look on the dark side and forget that their loved ones are still alive and need their love. i just think that we should make the most of what we have and perhaps share story's that make us laugh, perhaps not at the time, but after when you think about it, but not at the suffers expense!!
We have booked a holiday to Cuba in October, not sure how i will cope, but i am determined to go and enjoy myself while i still can, i want my Husband to have good memories, not bad.
Perhaps we should tell each other Jokes to brighten our day?
Hi, I appauld you for the above email. My first indication that something was wrong with my mum (aged only 60) was her speech started slurring some days, it wasn't long afterwards her co-ordination was off, she would walk into side of doors an the backward falls began, we were lucky and got diagnosed within months. There is no normal life with PSP. And as the illness progresses my mum did feel she had lost dignity as she became more dependent on others. Saying that, she's had hundreds of falls, some requiring lots of stitches. That little voice in her mind saying I can do it. She has been so brave over the years trying to cope as the PSP takes more and more away from her, walking, fixed pupils, eating, ( liquidized food now) even not being able to chat on the phone with friends and family as her speech is very hard to understand when not in person. Whoever wrote that quotes needs their arse kicked !! Thank you for making our voice heard.
Hi Strelley, Thanks for your reply, i must admit some days are better than others, but if i sit around too much i get stiff and find it more difficult to move, i try to be as interdependent as i can but not always successfully as i would like. I am in the UK near Watford, the sun at the moment is nice and warm, probably as good as your winter!!!! I only gave up full time work last August, not my choice, so still feeling a little rare and missing everyone at work, i was a manager in a care home so have cared for many people with this decease and PSP, never dream' t i would suffer myself!! I don't like reading negative stuff, its nice to read something positive for a change to give us hope, even if it might not be completely true, as they say different people suffer in different ways, we are not all the same.
Your post made me laugh. There IS comfort in numbers; it's a cliche but it's the truth.
Sometimes I forget my limitations when I'm puttering around and find myself low to the floor and/or on the floor...and then comes the "oh, oh...". I am stuck. I've found myself slithering a long the floor as well to get to something I can grab to help me elevate myself.
My oldest daughter, if if I'm up and puttering around and/or before she leaves the house, always says "Whatever you do, don't get on the ground!"
Hi Judy, i agree there is comfort to know you are not alone, We all do silly things sometimes, my husband worries when he leaves me alone, which isn't often. I can sit here and feel perfectly well, no pain and fine, i feel i can do anything. Then i try to get up, comes back to you with a wallop!!!!!! I refuse to give in, luckily i havn't had a BAD fall yet, just balance issues, furniture comes in very handy, but i won't be doing anything on the floor again, next time i might not be able to get up!!! xx
I know exactly what you're talking about. I am still, and probably will for awhile, having trouble with acceptance. I, too, find myself, feeling fine, sure I can handle a task, even a simple task. But when it comes to doing it, usually am not successful, or get it done but with a struggle. I have learned to keep my walker nearby so I have something to grab onto if I get stuck. Sometimes that doesn't work either. I refuse to give in, too, but have hurt myself a little or come close to really hurting myself while 'doing'. Now I'm trying to focus on how to get some of these things done by modifying how I do them. Realize now there are a few things I simply need to let go of for my own safety. But, 'puttering' around the house (and the yard; another can of worms), has always been a calming, enjoyable, type of therapy for lack of a better term. I'm right there with you, Tisha
Hi Judy, i do try to do things in short bursts as get worn out easy, seem to be all right when walking holding on to Hubby outside, but get exhausted when i try to do physical things. Havn't given in to using 'walker' yet, but do use a stick and foot brace when i have to. Will keep going as long as i am able, live for today, you don't know whats round the corner!! Take it easy, be safe xx
HA HA JILL, THAT IS A GOOD ONE :). THIS ONE I HEARD THE OTHER DAY, TRUE STORY, A WOMAN WENT INTO A BUTCHERS SHOP AND SAID TO THE BUTCHER 'POUND OF FILLET' HE SAID 'BET A POUND I DON'T' :).
A MAN BROKE INTO A SOLICITORS DOWN THE CHIMNEY, HE WAS FOUND THE FOLLOWING DAY DEAD, I KNEW HIM! HIS NAME WAS SOOTY, HIS MATE SWEEP HAD CASED THE JOINT!!!
sounds great Shasha, i live in a bungalow so its too small even for a normal chair, they said they might have to transfer me to warden control if i get worse, i said no way, i would rather empty my rooms than give my bungalow up, we have waited too long for it. Good luck with your new chair, you will be a new women, there will be no stopping you, will you be able to use it outside? We have shopmobility here that you can use the electric chairs around the shops and town, my husband won't let me use one, he is afraid i will run people down, i'm not sure why? haha. Keep us informed of how you get on, hopefully you will get it soon. Trisha xx
I remember shopmobility when we visited uk last year - it was so funny as nearly dismantled marks and spencer iin luton - and my husband was so cross but i just giggled !!
do you live in watford ? i was brought UP IN Cricklewood and my brother lives at codicote near hitchin herts i am sure you would nt be as bad as me at driving ione though
we live just outside watford in Abbots Langley. not too far from your brother, we sometime go out that way for a ride. I am hopeless at driving, i tend to aim at people instead of going round them hehe. Just as bad when i was learning to drive a car!! gave up in the end. My brother live in Australia in Woywoy, he used to live in Scone NSW, he owned a hotel there. we visited 2 years ago, didn't want to come home, i cried when i went up the steps of Sydney Opera House, i didn't think i would ever get there, took 10 years to save up, hadn't seen my brother for 25 years! The Blue Mountains were breath taking!! xxx
I enjoyed reading your messages. I have found it really helpful reading blogs like yours and Jill's as they help us carers to understand a bit more what these horrible conditions are like for you as the sufferers.
My husband has never truly expressed what he has felt like with psp and now his speech is so poor, long conversations do not happen.
On a lighter note, if I go out for a short while I always say to him "no changing the light bulbs". This came about because one day a few months ago, I was cooking and heard a loud bang from the lounge and knew immediately my husband had fallen over. I found him sprawled across the coffee table, unhurt apart from his pride, when I asked what he was doing he said he had just wanted to change the light bulb. He hasn't been able to do anything like that for two or more years. Once I had got him upright again and back in his chair we both had a good laugh about it.
It is a horrible disease, but it does produce some interesting and funny situations at times and being able to laugh together is so important.
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xx
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