Riding the PSP Seesaw

One good day, three bad, two good, four bad. And then of course, one good hour, two bad, two good hours, three bad. The choking comes and goes but never goes away.

Sleepy, sad and tired. It goes on and on as everyone here knows.

Waiting and fearful always and can never plan or understand.

PSP is the challenge of my life which has changed forever.

I tell Charles I'd do it all over again and I would. Wouldn't you.


36 Replies

  • Caring for my hubby with this dreadful Ilness has been the most difficult challenge I have ever had to face and cope with. Going to bed every night and not sleeping through ... afraid of what the next day will bring ..... yes of course I would do it over again ..... but i would join this site a lot earlier. Jxx

  • Thank you everyone

    All your posts made me feel a bit better. I live every day wishing I had been more patient and that some one would have told me of all the things I could have got more help with. (Like the soft neck brace-instead of me trying to hold my husbands head up) would do it all over again in a heart beat but would do it better.

    I still feel angry I didn't do it better but hearing that you all feel the same way helps a bit.

    I hate PSP

  • I wish I were still doing it, of course, but better, more kindly, more patiently. I miss my sweetheart more than I can say, and wish I could trade places.

  • I keep feeling like my time is soon. I don't know if that is right . It's kind of like when B would go somewhere; camping or visiting parents or soemthing I knew he would come back or maybe I wuold meet up with him .....I sort of keep waiting for that moment....I do feel like I am not long for this earth and thus I must needs get busy.....(don't worry not talking suicide ...just feel empty....)

    love ya


  • Find something, a cause, you would die for, then live for it. Love and Peace, ec

  • The cause is me

    I hope you find meaning as well

  • easterncedar..................

    Amen!!!! Could not have said it better.

  • I hate PSP with every fibre of my body and it is catastrophic for those with it and their families and loves one's but I would rather have mum as she is now for as long as I can than not have her at all. Xxx

  • My response is basically "what easterncedar said"

    I would do it all again in a heartbeat, but I wish I could have done it first time round without all the temper tantrums etc. But I would have done anything for David, and I hope he knew that, I think he did, despite my whinging!

  • So so hard in the moment

    This morning P couldn't hold his bowels

    I spent the morning cleaning the tub

  • I look back on the things I did, so much nursing and cleaning, and it doesn't feel like me at all. But we do it until it is done. Was it me?

  • Agree would do it again, would try to be more patient, it's so hard when you are tired, doing things you never thought you would have to do, the agitation is the worse for us, so bad. Yvonne xxxx

  • Oh Yvonne, the agitation is driving me up the wall, I'm shouting all the time. He's scratched his head raw, pulls mitts and socks we put on off every 2 mins. Kicks slippers off, wants them back on immediately.Pulling at clothesand so on. Is there no meds that help??? Hugs GW xx

  • George is on clonazepam 500mg doctor said if he is agitated to give him 2 tablets 3 times a day, on Thursday phoned up the doctors, they sent the DN in to give George an injection, it was so bad, felt like screaming, Kevin gave me the name of the tablets, ask the doctor for them, they work, but take quite a while to kick in. Yvonne xxxx

  • Big big hug Yvonne. I was so lucky Chris never got agitated. It must be so exhausting for you.

    love, Jean xxx

  • It is very tiring he seems to be agitated most days. It's so hard xxxxxxx

  • Thank you so much Yvonne I will be on the phone on Monday....what does George do when agitated. ??


  • Keeps calling, wanting to go to the loo, tries to get of his chair, banging the wall, calling my name, wanting to go to bed, it is so hard, as soon as you sit down he starts, stress stress stress, I try so hard not to get upset. Yvonne, he also scratches the back of his head. Yvonne xx.

  • Crumbs, sounds almost identical, it's a nightmare isn't it. He's been calling me from his bed now every 5 mins , this will go on until about 3 am and start about 5am again or 6 am if I'm lucky. I haven't seen anyone else on this site mention this agitation only you, that's why I am so interested. Doctors just look at me, Zopiclone no longer works, best anyone can come up with is sending me a night sitter once a week. On that night he usually sleeps!!!!!!! He doesn't sleep much in day either. My son found an article where a group of psp patients had been sleep monitored and it was found that the more advanced the illness was , the less they had slept. I hold it for so long then I get upset or rant, but I feel sooooo stressed. It's constant and I get 3 hours free a week, a day centre can't be found that can manage him. Next respit first week of December, hope I last till then. Thanks for your chat xxxx

  • He takes zopiclone 7.5 and 1 Larazapan, and 1 clonazepam 500 mg, he is so tired after having been agitated he usually sleeps when he goes to bed, yes we have some bad nights, but with the medication he usually sleeps. Yvonne

  • Dear Yvonne,

    Charles used to do this too. Turns out he didn't do well with any of the (diazapan etc. drugs). We tried vesteril and it has helped. I know how they can be. When they are in that "state" he gets so angry and stubborn, there is no communicating at that time.

    I feel for you!! Stress has aged me by five years! I'm spent.


  • Well I feel the same so stressful, today had to get the doctors to give him an injection, bloody hard day again xxxxx

  • Quiet here, sad and almost catatonic. Each day is different.


  • See my post below. Try vesteril.


  • Thank you I had missed that bit . Much love xx

  • Here, here. But when its actually happening we would react as we did !! Its called being human.

    I'm still struggling not to feel guilty whilst everyone tells me how wonderful I was. Its true - we are wonderful but not perfect. But we have stuck with a dreadful situation and see it through.

    Big, big hug, Cuttercat. This is what love is !!!

    love from Jean xxx

  • Yes, we saw it through. We might not have been perfect, but as I always said to David.... I'm still here, I haven't run away!

    Go carers!

  • Amen!!

  • Jean how are you? Xxxx

  • Exhausted - because I can be. So I have a cold and can snuggle in bed. Luxury, Yvonne. xxx

  • Get well soon Jean sending you a big hug. Yvonne xx.

  • of course I'd do whatever it took to make my family comfortable and safe....I like what Z had to say...it is the most difficult challenge I have ever had to face and cope with...sleepless nights....tired days.....

    Well CC I know you are tired but I am glad you still talk to us....it's so hard to be there for him and you wonder if you are doing everything you can......but know you are doing everything you can.

    Do Well


  • I'm so glad I'm not the only one who thinks I could be more patient etc. I too would do it again but I would definitely get more help earlier on, going up to my dad's every day between school drop off/pick up/weekends/school hols whilst trying g to hold my family together has been the hardest thing. It's got to a point where my Dr says I've reached my limit and should get more time off! !! Yes, thanks doc! I just wouldn't do it all by myself if I could turn the clock back. X

  • Wonderful to read all of the comments. Each day I prAy to not be impatient and discouraged. I put on a good face and do everything by route. Smiling, telling him we are a team, watching him deteriorate and not crying. Worrying about what I should be doing to prepare for what this disease will bring next, worrying about what it may cost to care for him, knowing we will soon need help. Each and every day is so busy, there is no time for grief. I admire those of you who were able to care for your loved ones until they left you. It is already getting difficult for me to handle him alone safely. One day at a time. He is still the kind man I married. I would give anything to just have a 5 minute conversation and see his big smile.

  • I was able to keep him home because I had the palliative care team in. In practical terms it was the easiest ever, as they did all the changing and Chris always had frequent bowel movements. He was bed bound and slept a lot. But it gave me time to see how desperate his situation was. We focus on managing and the changes happen slowly, as well as the cliff falls.

    But conversations were one-sided ! and he could only smile when I pushed his cheeks to start it !

  • Bless you Cuttercat. Stay strong. There's nothing I can think of that's worse than the PSP rollercoaster xxx

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