S is having a good spell. H E L P!!!

Hi, this is one of those good posts! S, for some reason, is in a really good place. Speech is great, ( for PSP) spoke more words in the last few days, than he has in the last six months! Eating has improved, haven't had to feed him for a couple of days. Even able to drink.

The downside? Well, he thinks he can now get up and more around. Had to peel him off the fire hearth yesterday! Only a few steri stitches to his eye brow. Missed the log burner by inches. Thought that stage was done and dusted. Wrong again!

To hear his voice again, (trying not to cry!) well, I don't need to explain!

He is off into respite on Monday. Anybody want to start a book for how long before he ends up on the floor? I will take odds for seconds after I leave him!!!

I am doing my level best to let him do things for himself again, but it's such a shock. I am deliberately not understanding, when he is trying to say something. Listening to him cheer England on tonight against South Africa (rugby!) was something I thought I would never hear again........

This disease has to be the cruelest thing around. I was beginning to accept, that time was running out for us. Now? Who knows. Someone has just planted that seed of hope back in my brain.

Please, please, someone find a cure for this hateful illness, can't believe it's not possible. It's obvious, S has no real brain damage, well none that can't be lived with. Something has triggered this improvement. If only I knew what, so I could bottle it!!!

Lots of love


54 Replies

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  • Oh, Heady! That is almost unimaginable. As you say, it does seem to prove that there isn't damage to the parts of the brain that he has been unable, I guess, to access for a while. Emotional whiplash for you. I wonder how HE feels bout it all. I would so love to hear my sweetheart talk as he used to. We get a few words here and there...and I still have his voice on his answering machine. He always had such a fun vocabulary. Still does, when I can suss out what he's aiming to say! I hope he survives the improved mobility! Love, Ec

  • Heady I think it is the horrible illness, playing with us, a few weeks ago I thought George was going to die, he looked really bad, he could not feed himself, wanted to sleep all the time, looked really bad, but now he can eat by himself, talk, does try to get up, has everyone running to catch him. So glad S is doing things again, it makes you really happy and gives you some hope, with this horrible illness. Have a good rest on your rest bite, I think I remember you are having a couple of weeks, enjoy heady you deserve it. Yvonne xxxxx

  • Hi Yvonne, it's only a week this time! I am looking forward to it though! How do we keep going, with this roller coaster ride we are on? Perhaps it's having a bit of sun and warmth, that has perked our men up. Let's hope we have a lovely LONG, HOT summer!

    Lots of love


  • Don't get me wrong, it is only a few words, but it's a darn sight more than I have been use to!!! I will try and find out, if I can, how he is feeling and let everyone know. I accept this is just a blip, but will enjoy every single second, if I don't have to keep picking up him up from the floor!!!

    Lots of love


  • Lot's of love to you both.

    A tear in my eye.

  • I get much the same thing happen . I think it's what keeps us going and more determined to cope .

    All over Xmas John was dreadful not able to even rouse him for a few days at a time , worried then about dehydration and weight loss .. Talking to Invisalign people although I couldn't understand a word or even Hear it .

    The he suddenly switching back on. Can speak enough for me to understand

  • Wow! I hope you find something that has started all this so you can tell us.


  • Oh, I wish, NannaB, I wish!!!!!!!!!!!!!

    Lots of love


  • Wouldn't that just be the ultimate dream, one day it will happen but I fear not n Ben's lifetime. Isn't it amazing that a good day can have such an effect on your wellbeing and make things much more bearable. Ben's sister is down from Edinburgh to see him, he was very apprehensive and wanted me to hide his new walker from her. I managed to persuade him that hiding things away won't help matters. She was quite shocked to see how he has deteriorated, he just isn't safe to walk anywhere unaccompanied even with his walker. It was so lovely to see them together.

    Long may C's the upturn for the better last.

    Love Kate xxx

  • Isn't sad that we all feel we should hide things from others. Perhaps, if all our societies were a bit more open, there would be more tolerance in the world. AND more help!!!

    Lots of love


  • Oops sorry that should be S not C, getting him mixed up with Nannab's C. Must be time to get my head down and give my brain a rest! xxx

  • That is wonderful, enjoy this lovely time together, my darling man is in hospital at the moment, Peg planned, but today, after having his feed through the nasal tube, got some strength back and he 'talked to me too ' very quiet but I heard him ๐Ÿ˜Š xxx

  • So happy for you Heady. Wish I could say the some about D. He was getting so rigid I knew something was going on. Sent him to the hospital for tests and they released him after 3 days in worse shape than when he went in. They did not give him his meds the first day so screwed him up even more. I fought with the nurses, WTH is his meds and gee they didn't know. They wanted to send him to rehab and I said no. His aide came to the hospital. He could not walk or stand, rigid as a board. The hospital threatened me with if you can't move him we will send him to rehab. I am so furious, told them I was going to call the TV stations and the newspaper about the horrible care he was given. Well home and with me taking care of him, the following day he was able to get up. Walking very slowly and very weak but at least he is up. There is no place for him to go except for rehab and it is hell getting them to let him go home. Hope and pray things continue well for you.


    AUDREY (aka auddonz)

  • People haven't a clue how to treat sick people. You wonder why some of them go into the medical profession! Well Done for sticking to your guns, hope that D now responds.

    Sending big hug and lots of love


  • Heady you are so right. Rotten day for D, he fell twice, once he could get up himself the second time I had to call 911. They know my name, just lifted him and he was so off balance he couldn't stand at first. I asked them to lift him again since they put him down on the bed and this time he could stand straight and walk. Progression or how they screwed his meds up in the hospital. He is getting more and more confused. I am so exhausted I can't think straight not to mention my back is killing me along with the rest of my body :(

    Big hug back and lots of love as well,

    Audrey (aka auddonz)

  • So sorry to read this. Its awful when your back hurts and you have to keep on hurting it !

    Big hug and love from Jean x

  • Probably both! But that doesn't stop your back hurting. Feel for you, go to the osteopath regularly myself! Hope D is starting to feel a bit better.

    Lots of love


  • Oh my goodness, Audrey. I wonder what was going on? Good for you for fighting as you did. Hats off to you,

  • East you have to fight for everything. I also got a call from elder options, mess on machine, that they were told I am looking for long term care services. WTH does that mean? Rehab facility or someone they can have come here every day. Have to call them tomorrow. Wonder if the hospital is getting even with me for my threats.


  • Whatever they are offering, I hope it is good! The help I have at home is saving my sanity.

  • Where do you get it from? I am loosing mine, sanity that it. Gong to bed. TTYT

  • East do you have people who come in everyday like aides. The best I can do is 2 hours, three times a week from the VA. Now they are adding another 4 hours, but just 2 days every month. I need more help so badly besides PT, OT and a nurse twice a week. Today was a horror, he couldn't get out of bed and stand but managed to put his shirt on. Also fell twice. I know you are somewhere in the north east. Do you know something that I don't?

  • The VA gives us 14 hours a week for home care provided by an aide from an agency, supposed to be helping around the house, but she's 72 and a former CNA, so she mostly just keeps an eye on my guy, feeds him too much and sometimes tries to get him to do a little exercise. We hire her for a few more hours and then for the other 23 hours we have someone a friend recommended, just a nice woman in her early 50s who also takes care of him. It's all expensive, but worth it. If we didn't have help, he'd have to be in some kind of nursing home.

    The VA may figure we need more hours because I work, and my guy and I aren't married, so if I don't take care of him he might land on their doorstep!

  • I only get 6 hours from them and they just approved me for respite but only 4 hours twice a month. I am going to fall down

  • Don't fall down! There's no one to pick US up!

    I was approved for respite, but there's no suitable respite program any where near us, so the approval is useless. One private operation said they'd provide a room for 300 bucks a night, so I was keeping that option in mind as an emergency thing, and they just suddenly shut down last week, displacing all their residents! The word was that they couldn't get workers in.

    So it's up to us, Audrey. We have to carry on. Hang in there. I'm rooting for you. Love, ec

  • Me too. I end up paying a fortune to my caregiver to spend the night. I save up and see friends. I'm going end of the month. But no more until perhaps fall. I'm afraid of the respite places. My friend took her husband and he fell and broke his hip. It's unfamiliar and they aren't there often to help, plus he's unfamiliar to them as well.

    We're a bit stuck. Hang in there.


  • I am so trying ec.



  • Hi Audrey, isn't is awful the way carers have to fight the professionals, Thank goodness D has you fighting his corner, good on you. Good to hear he has improved at home, all due to your love, care and devotion. Long may he continue to improve.

    Lots of love Nanny857 xx

  • Hi Nanny, I am so afraid I am loosing the fight. Rotten day today.

    Lots of love back, Audrey (aka Auddonz) xoxo

  • For you ๐ŸŒน๐ŸŒน๐ŸŒน๐ŸŒน๐ŸŒน๐ŸŒน๐ŸŒน and keeping you in my thoughts. Hope you get more help for D and more support for yourself. Nanny xxx

  • TY Nanny. Getting 4 hours of respite, twice a month in addition to his aide but that's it :(

    Audrey xoxo

  • So sorry Auddonz. I think the medical professionals are clueless. We had a good weekend but he is so tired out that I'm letting him rest. He sometimes tries to talk a bit and comes up with a good conversation but that's limited. it's day to day and he doesn't see the changes but I do (and you).



  • Cuttercat, you are so right

  • My god, what a roller-coaster this is !! I know what you mean about hopes going up and down. I can't bear it. What it must be like for them ?!!

    Enjoy your time out whilst he is in respite.

    love and hugs, Jean x

  • Thanks, I will!!!!

    Lots of love


  • Heady, I forgot where you live. Where does he go for respite?

    Audrey (aka auddonz)

  • Utterly amazing heady!

    God this Psp really does send us on a roller coaster of emotions!

    But the fall, oh god soooo frightening!

    Big hugs to you both and I hope the respite goes well for both of you without incident!!


  • ๐Ÿ›ซ๐Ÿท๐Ÿท๐Ÿท๐Ÿท๐Ÿท๐Ÿท๐Ÿท๐Ÿท๐Ÿท๐Ÿท๐Ÿท๐Ÿท๐Ÿท๐Ÿ›ซ

    Lots of love


  • Wow Heady, S really does have a roller coaster of PSP, hope the respite home keep him under observation and keep him safe so you can enjoy and relax in you time out.

    Best wishes Tim

  • You've both been having such a tough time lately, I'm pleased to hear S is a bit more of 'his old self'

    Enjoy your break

    Lots of love

    Debbie xx

  • How lovely you have had a good spell but not so good he got brave and ended up on the floor. Enjoy the respite break x

  • I had to show your post to Des's carers when they came this morning! same thing here, Monday he was dreadful and it took 3 of us to get him from the chair to the bed a yard away.Tuesday we went to his younger brothers'wife's funeral,all very sad she was so lovely.3.30 wednesday morning Des is on the floor,I asked him what happened ( not expecting an answer he hasn't spoken for months except with thumbs) I was going for a pee he said clearly.He wears pull-ups day and night.I got the commode to him and got him back to bed after bathing his cut brow and arm.Can I have some tea please said this voice. I don't think I replied I was in shock.Well we had a good chat til it was light then I suggested another hour or two sleep. I dozed off to the sound of him talking to himself.He was also waving his arms around.When the carer came she asked who is that talking?I took her into Des who was chatting away to himself. I decided it must be the effects of a UTI so the next day the carers took samples to the GP surgery.GP phoned to say all OK, perhaps it is his chest though.GP called checked for everything and said all good.

    He has had several falls since but is just bruised not broken.

    He has insisted on cleaning his own teeth and doing his own shave. most of his wash he does and really cooperates with dressing.Apparently it is the talk of the care agency and they are all so pleased for us.For the first 24hours I thought it might mean the end was coming but he is still the same today and having left him in his chair I found him back in bed and expressed surprise but he told me it was not that unusual.I don't know where he has been these last months!No choking and spluttering over drinks and food and after he has brushed his teeth he rinsed and spat like he used to, but for months he found spitting out impossible!

    I will make the most of however much time this lasts, I believe we live just 30odd miles apart heady so perhaps we share water supply and that is where it is coming from who knows?

    Love to you both from us both Pxx

  • Amazing story! I wonder now what I would talk about if we could....

  • Hi P, I'm so happy that you and Des are in a good place at the moment, long may it continue. Lots of love, Nanny857 xx

  • Thanks Nanny, we saw my nephew and family today and Des was there with us, Lovely.He slept thru' the last visit. Px

  • That's great P. It's lovely to cherish these precious moments, lock them away, and then Look back on them when times are not so good. xx

  • Wow


  • S's "improvement" started on Wednesday. Nothing as dramatic as yours. Perhaps it is the water, was at St Peters Hospice that day! Which side of Bristol do you live? We are down in Clevedon. Not quite as bright today, but did insist on putting his shorts on this afternoon and has called my name a couple of times. Who knew that hearing your husband say your name, could give soooo much pleasure! The nicest thing is, ( so far!) he hasn't used this improvement in communication, to release his frustrations!!! Like we have had before. I wondering with S, whether the antibiotics he had a couple of weeks ago, has enabled his body to fight a lingering infection, that we didn't know about. What ever, it's has been lovely just to hear him say a couple of words again!

    Lots of love


  • Hi Heady, We live in Rode a village just outside Frome so maybe it is Chew Lake !We are still falling,yesterday the delivery man (saint) from Ocado got him up and in a chair.Neither of Des's daughters have seen him like this and I am afraid to tell them because he might have reverted by the time they get here,but both should be around soon and What a Surprise for them.

    One of my carers actually cried with the joy of Des speaking.

    He wants to go out in the car but I am not sure yet he might want to take control so have got sitters coming Tuesday and we will drive off.Take Care of yourself!

    Love from us both Px

  • Dear Heady this has happened to us too. After not being able get up without a lift or do anything for himself for 3 months . One day we were going out to an appointment right after breakfat so I left him in the wheelchair in the living room to watch the news while I was loading the dish washer. I looked over and it looked like he was going to stand up and as slick as could be stood up ad took several steps to his recliner and got ino it all by himself. My jaw dropped. He has been wanting to go play games at the seniors center and even plays shuffelboard. This has been good for three months now. Has not fallen yet. Uses the wheelchair mostly but bears weight real good. It is like waiting for the other Shoe to drop is it not? I try to enjoy each day as it comes. But like you I worry about relapse. R likes to read again and play scrabble on his computer too. I do not understand this decease either. But we will take every good day we get. Went to the rodeo parade today. It is the Alberta summer rodeos fairs and parades. Hubby loves them . Enjoy this reprieve and I pray that you find him in good spirits when you get back from your respite.

    Noella 21

  • So good and so interesting Heady, as B has been the same, better speech and thinking he can walk about again, (although when it's in the middle of the night as it has been this week, It's a bit scary and exhausting!) I wonder if I am holding him back keeping him in a wheelchair, but then feel terribly guilty when he falls. Roller coaster ride . I was thinking that his improvement must be sun and fresh air as we went for a walk with friends in Tuesday and he was much better after this. Enjoy your respite! Rx

  • Following my previous comment, I was explaining things to yet another different carer, when B raised his head and said firmly,"I CAN SPEAK FOR MYSELF!! Enough said!! X

  • Hi, I was going to make a comment, about this improvement in our men, must be because of the extra light and warmth, but if your husband is doing his wandering at night, it can't be that! Perhaps it's something to do with the high summer air pressure. It is strange that several of us are experiencing this improvement. Long may it last, or we find the reason and give them a top up!!!

    Lots of love


  • Hi Heady, that's amazing. Having read this post and your replies to others it is very moving and that others have also found improvement in their loved ones. I hope S continues in this phase (but not falling) and the care home staff keep a close eye on him. You enjoy your week of respite. Lots of love, Nanny857xx

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