Progress

[gypsywoman1947]

I wish I could understand this illness...how come my husband can march to the newsagent and back every day, about half a mile, walking quite fast , but falls over fresh air and at the bat of an eyelid most days in the house. He can't turn around without stumbling or falling , he now has a bed in the lounge as he tries to take two steps at a time up the staircase and falls backwards. Now we cope with the stairs together about 3 times a week for a shower. He can't get out the car , sometimes he can't get out on bed he has no strength in his legs it seems. I'm just venting my frustration .. I know many of you will be in far worse situations , but you will all have the same feeling of bewilderment and despair.

[peterjones]

hi gypsy woman well mate that's the nature of psp it keeps you guessing all the time im the same except I tend to fall outside of the house as well as in I think it must be the confinement in the home for your husband

mate I have a fairly small kitchen which I seem to be stuck in with my feet I have trouble getting them going

don't forget tomorrow want to see a good em from you

a funny one see yer peter jones queensland Australia psp sufferer

[gypsywoman1947 in reply to peterjones]

Hello there so good to hear from you, it's 3.24.am here in UK and I've just got back into bed from picking my husband up from lounge floor where he has his bed, having gone to the downstairs toilet ok a couple of times the third time he missed the bed when getting back in. Its a nightmare illness isn't it ...we too have a small kitchen which he seems to be much worse shuffling around in so I think your right about the confinement. Well done to you for using this site and all the tips and comments that are so helpful, it keeps us all going.

[peterjones in reply to gypsywoman1947]

i gypsy woman thanks for your prompt answer I know this is nightmare for the cares mate and you have my sympathy but we have it and its not going to away unfortunately so we have all got to live with it until they come up with something that will help us all and the sooner the better because time is not on our side for a lot of us the people I feel really sorry for is the ones that have reached retirement age

and all there dreams and ambitions have all been taken away from them I was very lucky I done all what I wanted to do during my time ive had many different jobs so to pack the job up and go off around Australia was nothing to me and a world trip and Canada and Alaska and Hawaii they were all great times but I have had them and some of these with psp after working all there lives its a great shame mate anyway matey thats a trip, down memory lane there are better days ahead for all of us you will see well mate I hope your husband never hurt himself when he missed the bed give him my regards and tell him not to give in just keep going and think positive I know its hard thing to do but im sure he can do it mate so take care of yourselves all the very best to both of you because you are very important to your husband peter jones queensland Australia psp sufferer

[Hidden]

Celebrate the fact that he can do the brisk walks, and keep him doing them as long as possible. Until July last year Chris went for a walk everyday. I would watch him set out with his walking stick, very slowly at first then picking up speed until he was almost hurtling along. I used to think he had a very faulty belief in momentum. If he could achieve a certain speed then the momentum would keep him going without a fall. He actually had two walks one involving a quite steep upward slope, the other flat. In late June neighbours brought him back from a fall on the slope. Head bloody (gravel cuts from fall). A couple of weeks later other neighbours found him unable to get up from fall on flat walk. No major damage this time but that was the end of independent walks. And for C the end of serious exercise, his decision. Now his walking is very bad and he actually rarely walks anywhere without me, or someone else, supporting him. I am dreading the day he cannot walk at all but also sure it will come in the not too distant future. Clearly the confined space factor is valid. I also think sight problems play a role. But we have to keep plodding on. Good luck to you.

[gypsywoman1947 in reply to Hidden]

Thank you for comments I too think sight or vision problems don't help although their not evident he doesn't always seem to get his bearings. We do have told on as you say but it's a great help to be in touch with others x

[loppylugs5]

I think like Parkinson sufferers PSP folk find doorways difficult to get through so in the house there is challenge after challenge but a straight walk no doorways gets him moving and perhaps he gets through the shop doorway with built up momentum! Whatever it is it is good he can do it still.All of our indoor accident blackspots are doorways it is like an unseen barrier stopping him from making it and then he falls.Good luck to you both in your fight against this frustrating disease we are all in it together Px

[gypsywoman1947 in reply to loppylugs5]

I've noticed the doorway thing also, it just seemed ridiculous , I'd be saying " come on you have plenty room " and I would get so frustrated. If only the specialist could sit us down and explain all these possibilities.

[easterncedar]

All so familiar! My guy fell on a short walk to meet me coming home last summer, was picked up by some kindly women passing, and never wanted to go out on his own again after that. I'm hoping that when the snow finally goes he might get used to going out with the wheeled walker and regain some of his independent mobility. The rushing momentum is actually quite a problem for us when we are out together. He uses a cane and leans on my arm. I feel like I'm trying to hold back a runaway train sometimes, and he is clearly in danger of driving himself headfirst into the ground, but he says he can't slow down. Psp is so hard to manage. Always something else to deal with! Courage, love and peace to all. Easterncedar

[gypsywoman1947 in reply to easterncedar]

Thanks for comments this is exactly my experience, so hard to understand, best wishes to you both as you struggle on

[cabbagecottage]

I believe it's the spatial awareness , made much worse in tighter smaller movement . such as turning going through doorways . Climbing upstairs . using cutlery , feeding yourself . Dressing /buttons etc .etc .

try and make sure you have at least one hand free , preferably both .

Ask for referral to OT . get anyaids that make you life easier , more importantly safer .

I am talking from experience with my husband John . I ending up almost carry him around . The last time he did go out his legs crumbled under him and the posta,n along with another young man carried him up the street and into the house and his chair . . When you get in or out of the car make sure it's off the road and not the pavement . I use to use in the first place a plastic bag on the passengers seat for him so that It made it easier for him to slide over or around . Whe we uses a taxi the driver would pull him over as I pushed him lol. Where Thera a will there a way .

As for a bed grab rail . they are very easy to dot and not terribly expensive to buy . It will help with turning over as well as get eying in and out of bed ASk. Not as. And use not dot . ! Getting !

make sure your feet don't slip forward as you get of the bed . my husband twice ended up under the dressing table . once again I called the postman as he passed to help . he was great . Even gave me his TEL No in case of emergency .

When my husband was going out he was the same . Couldn't walk slow. Or even stop I didn't understand at the time and get very frustrated .

he is now 81 but as a young man oils never walk uphill slowly almost as if he was even then having to push himself

[gypsywoman1947 in reply to cabbagecottage]

Thank you for sharing. It's such a help to compa re with although I know each psp sufferer is different, I just couldn't get my head round the fast walking bit , I can hardly catch up . We are on a 15 week waiting list for the occupational needs person but last Friday the GP was going to ring them and say we have urgent need. This week he has fell every day and night, so I hope we hear soon. I wish none of had to use this site but since we do I send you my best wishes and look forward to your posts.

[cabbagecottage]

Drivers !! DO take heed if you happen to start misjudging corners kerbs , or maybe even veering to the centre of the road . my husband. Was doing it for. Long time without realising it until I. Even started to have to hold my breath . he had aways been a very good drivers o never ever felt uncomfortable .

He went for eye test and bought a smaller car when I told him about it . luckily when I did say I thought better if he didn't drive at all . not an easy thing for me to say. To him On top of that I don't drinpve anymore so it made a big difference to my lifestyle . but ever the sensible man he listened to me

So if Family or friends mention this to you do take heed and care ..

[jillannf6]

i tend to fall over when com gin into the house too - it is a learned experience e it think and i have to do turns to the right and left and that make s me fall over

(mind you i could not walk outside eon mhy own now at all - i wojudl fall a sa the end

of the road i have a right turn and it would meka me fall over)

i am in a gorund floor apartment with no stairs to navigate at all which is mcujh easier than the 25 i hd to go jul an d down each dewy when i lived upstairs in the 1 floor apartment where i lvi ed for 3 years on my ownt

it certainly keeps you guessing wha twill happen next

i am gettign to t he stage of inciontinence i think as i do not always ge tot the toile ton time but that is an 1optional extra as they say with this PSP

my eye saregetting word etoo but i have go tsome g old sunglasses rm the visual impairment team at the local council with some more possibilities of mor eheolp in amkagin my computer screen larger or at leas the txt larger for me motuse it- i gmat

see whatt i am typing otherwise and can make some v "dyslexic?" versions of words

better go and hav eosemljunch now

mhy thy[ign si gettign worse by th eminute or secodn1

lol JIlll

PSP person inthe UK

[gypsywoman1947 in reply to jillannf6]

Thank you for your comments, I think you are marvellous to write so many posts on here with all your problems, I learn a lot from these posts . I hope you get all the help you need, my best wishes to you

[jzygirl]

When Brian was able to walk he would start at a normal pace and as he got tired he sped up almost a run and I had a job to keep up with him. And the faster he whent the more jelly like his legs became. The only thing I could think at the time was he was trying to get home before his legs gave out I did say if you walk slow and steady you wilbe able to walk more. But he said his brain and legs won't walk slow and steady. Janexx

[gypsywoman1947]

My husband tells me his brain tells him to take two steps at a time up the stairs causing him to fall backwards, what an illness this is , so difficult to understand. Thank you for your post .

[PUTLAND]

OMG how we can all relate to the falling and the speed walking. When we are going upstairs I go behind my husband, but have to keep telling him to put each fool well in on the step he just tips the top of his foot on the step and starts to go backwards, while I am behind him trying to hold him up. It is such a horrible disease.

[gypsywoman1947]

Exactly what I used to do but we had so many mishaps he now has a bed downstairs and we cope with the stairs every other day for a shower. Fortunately we have a cloakroom downstairs. It's difficult isn't it . Thank you for replying.

[GenaBenedict]

gypsywoman 947. I don't understand it either. i'm glad you are trying to understand it. I'm trying to educate my primary care { my daughter } till i'm BLUE IN THE FACE SHE DECIDED TO PUT ME HANDS OF CARES THAT DON'T NOW ME OR UNDERSTAND ME OR MY DIABETIC DIET. I THINK I SHOULD GO TO A FAMILY HOME SO SHE WONT SEE ME EVERY DAY. SHE WON'T HAVE TO LOOK AT ME, SORRY I'M DEPRESSED TONIGHT . HOPE I HELPED GENA

[jillannf6]

hi the speed walking is a problem for me too- i pick up speed and then hurtle fwds!

and FALL ove r of course (and i just Cannot get used) and i f i am kneeling down - i crouch down and then go over backwards every time it si the same and there is usually something in the house like a wall or radiator on which i hit the back of my head

but it is made of wood (like my dad's) and i haven't had many cuts on it but lots of bruises and lumps\

still we fight another day do we not ??

;LOL JILL

i try and keep positive and occasionally i have a rant but "NOT AT THE MOMENT" ANOthe r favourite phrase of mine i.e. keeping my options open .....

[gypsywoman1947 in reply to jillannf6]

you are marvellous, my husband fell again yesterday and I was thinking it would be a good idea to wear helmet and pads , or perhaps a blown up body suit !!!!! Joking a part it's no fun being black and blue and there's always the fear of a broken limb . Keep up the posts,

[jillannf6 in reply to gypsywoman1947]

HI I WEAR IKNEE PADS 24/7 AND HAVE HTOUGHT ABOUT HELMET ET C LIKE THE MICHELIN MAN

LOL JILL

[gypsywoman1947]

It's so very hard isn't it , I'm sure you must feel in the depths of despair sometimes. I'm sure she loves you and wants to help but it's so bewildering and frustrating for psp sufferer and carer alike. Does she read these blogs on here cause then she would find out such a lot and also know lots of others feel the same . I wish there was some sort of leaflet handed on diagnosis giving information of what may occur. I've just been called cause my husband can't get out of bed.once out he walks about, he may fall he may not. I gather muscles weaken and he can't pull up, to get up. Sometimes he can, why.? No one has any answers do they. This site has been my lifeline as a carer, my husband doesn't want to read any of it. I find somebody on here will offer a it of support when needed. Try and get your carer to read some of the posts. Bye for now I hope you have a better week

[cabbagecottage]

we had a walk in shower fitted wh n my husband started struggling along eventually after a lot of struggling on my part as well assisting him up the stairs , a stairlift . th were God sends

he started off with a hospital bed upstairs , This is now downstairs. o use the staitrlift myself .

I wish no that we had had the bed downstairs in the first place . it's not giving in its bing sensible and ,making life easier .I know you ar encouraged to stay as normal !!!! As possible But my back and neck would put be as bad as it is now if we had done so .

[jillannf6]

I AGREE BETTE RBEING FOREWARNED ABOUT HTSI PSP

BUT IT IS A MATTER FO BEING SENSIBLE AND ORGANISING THING S B4 IT BECOMES OTO DIFFICULT OT DO SO

I WISH I HAD ROOM IN THE BEDROOOM 4 A COMMODE BUT IT IS TOO LATE NOW AND THE ONE I HA DWHEN I LIVE DON MH OWN IN AN UPSTAIR S APARTMENT WAS SGREAT FOR THE NOCTURNAL VISITS TO THE TOILET - IT WAS FARTHER OT GO UPSTAIRS BTU IS NOW 35 STEPS AWAY (WHICH IS A LOT HWEN YOU GOTTA GO!)

ON THAQT CHEERFUL NOTE I WILL FINISH!

LOL JILL

[gypsywoman1947 in reply to jillannf6]

What a nuisance for you , we are fortunate to have downstairs loo right opposite lounge where husband now has his bed. It's a mammoth task to get him upstairs for a shower but we manage a few times a week. He still thinks he will beat this terrible illness, but the deterioration seems quite rapid to me when I look back on past 6 months. Keep plodding on is the motto, what else can we do but I am so pleased to be in touch with others on this site. X