I am so exhausted I can't see straight. D was up every hour to go potty and then has problems getting back into bed. Same issue, he says he can't get his legs on the bed and when I get up to check they are. Can I cry, I did last night :( Spoke to his Dtr today and she wants me to try upping the sinemet again and see what happens. She admitted its trial and error to see what works and wants to get him for a test one morning without taking any of it. He will be there 2 to 3 hours so he can be monitored.


42 Replies

  • Good luck, darlin. I hope the Sinemet works for yall it did little for B so he no longer takes it. but who knows, unless one tries like doc said, trial and error. Does he have feeling in his legs?. B does'nt know how to get his legs on the bed or his body in the right position. When he sees the bed he begins to fall into it even though he is too far away....I fear that is more the disorder of Executive function that disallows B to make correct assessments and act on information properly; ie how far the bed is from him; How to get into bed without sliding out; how to get in bed without first falling on floor. But again, he knows(?) where his legs are just not what to do with them ...Does that make sense ? I just hope you have a better night. Sleep well.


  • He is on it now, she wants to try to up it a bit. D has the same prob with his legs, he gets them on but I have to tell him over and over again, you can walk so move your legs over a little straighter. He knows he has to hold on to the bar as close as he can and then turn to his left. Sometimes it works,, sometimes, not. I am completely confused. Its like teaching a little one how to do things. This whole thing makes me crazy and he just doesn't understand. He is waiting for me to come in and straighten his legs out and cover him. Sleep, we will see :)

  • Oh dear, I really feel for you and think I know exactly how you feel. You have just described my darling how he was several years ago. I was up many times every night, sometimes every hour. I hope it's better for your darling but no medication made a difference, including increased Sinemet. Sleeping pills worked for the first hour and a half every night but after that, made things worse as he would still get up but would be so groggy he would fall. For 2 1/2 years I walked around like a zombi. I spent a lot of time cat napping during the day. I wrote down every time he got up and the reason and looking back now, wonder how I survived. But I did and so will you but it is tough, very tough. Having to repeat instructions over and over again is so frustrating isn't it? I used to get so ratty. I'd cry, shout etc but made sure that at sometime during the day, apologised and had a hug. Some days I even managed to get him to have an afternoon nap so I could do the same. I was prepared to get a night carer, I was so exhausted but here in the UK, things are different and I was given one, but unfortunately, as you have heard from our friends here, it's a crazy unfair system and not everyone gets the help they need.

    I sincerely hope and pray the tests they are going to do will show there is something to help you and him.

    Sending you a great big hug.


  • NannaB, right now I am a zombi and if things don't improve somehow don't know what I will do :( Needed that great big hug and back to you.


  • 💐 🍷 🍫


  • TY NannaB


  • We are considering upping the Seniment. Will u keep us posted how things go. We spend Wales nights on the toilet too. Some times I just cannot go back to sleep. A glass of wine usually helps. He will spend 30 min on pot, not able to go. Then wake me 30 min. later saying I'm wet. Good luck with Seniment

  • mthteach, Started upping it today. He says he just feels more tired. We will have to keep in touch and see how things go for both of us. Wish I could drink wine but with my conditions, can't :(

  • The neurologist told me to give him 2 tablets 3 x a day. He has only been taking 1 pill 3times a day. My spouse is in a PSP study out of Birmingham, AL. They hat me changing his meds. The doctor does not see where it is helping him the way it is now. Are u in the states? The VA really has helped us a lot. They delivered 4 cases of depends to my front door. They have ordered a voice box he can touch picture or type the word in, and the voice box will say the word for him.

    I never really drank much alcohol beverage in my life. My spouse was the drinker. But, I have to have my 1 glass of wine at night to make me go to sleep. I never could take sleeping pills. I'm too active during the day and they make me groggy in the mornings. He is texting for a pain pill. Better go. I would love to stay in touch with you.

  • mthteach. Yes we are in the US. The VA is a blessing. They delivered Depends to our front door as well. He takes 1/2 of 25/250 5 times a day and I just added another 1/2 of 25/100 in the morning yesterday. He seems to be moving better today but is still very sleepy. The fact that his balance is better means a lot to me. Send me a message any time. Going to sleep now. Meds for both of us and one of our dogs as well. TTYT


  • The zinen et df not whelp mebut Solefrnscinbhas stopped thev hourly toilet stops too


  • Jill, is that the same thing as trospium chloride or tamsulorsin HCL? He has been on this for about 6 months. He still gets up 5-6 times a night. Last night he woke me so many times, I could not go back to sleep for 2-3 hours. I'm like Auddonz, I get scattered/ stressed without sleep.

    I think we should all stick together and push for more help with PSP research. I understand some have to do more work for there loved ones and cannot handle anything else.

  • So sorry you are having interrupted sleep too. My hubby was getting up a couple of times an hour and we could have upto 5 nights like this in a row. No good me trying to get my head down during the day as he hates being in any room on his own now so would come backwards and forwards to the bedroom asking how long I would be! Also can't catch 40 winks on the sofa as he has the telly on and our dog comes over to paw me thinking I am not alright.

    Went into town on Monday and decided to buy some incontienence pants hoping I could persuade him, know he is against stuff like that. Anyway after a severe talk about how I can't possibly carry on looking after him when I can't even remember things due to such tiredness, he agreed but said it wouldn 't make any difference - proved hm wrong - bliss 2 nights of almost 8 hours sleep.

    Hope the Sinemet increase works, it did for my hubby's balance for manhy months, his balance has got a little worse but who knows what it would be like without the meds.

  • D doesn't like being in a room without me as well, so if I crawl into bed to try to nap it just doesn't work. he just said he feels more tired on the extra pill. But hopefully he will sleep tonight and will see what tomorrow brings. Before he was on the sinemet he couldn't move at all.

  • It is so, so, hard. Sending hugs. X

  • TY Robbo1, I needed that.


  • Hope the extra meds help him (and you) out so that you can get some well earned rest in order to help deal with the things that PSP throws at you. Fingers crossed. X

  • And toes Katiebow.


  • How I feel for you, it's not easy and with hardly any sleep it's almost impossible but you still manage. Hope increased medication and the test helps. Nanny x

  • You and me both Nanny. I don't know I am going to do if it doesn't :(

    Audrey xo

  • Hope it goes better tonight for you. Nanny xx

  • Me too Nanny xoxo

  • Be careful with increased sinemet dose. A couple of years back M had her dose increased from 3 to 5 tabs a day. Worked well for a month walking and speech improved for short while then she began to get uncontrollable leg and arm movements. Dr reduced Sinemet to 4 with no effect so after permission from Dr I started to reduce Sinemet to zero on my own. M settled down was reasonable for short time but when reduced to one a day noticed she zoned out for hours at time and became no communicative. Ended up on 2 per day no restless limbs and no zoning out. When on PEG had to change to Madopar same drug but soluble. On equivalent dose of levodopa but sleep during day increasing again. Tried an increase but restless limbs returned and loss of control of walk when I had her in hold, so reduced dose.

    Best of luck, Hope you can get some sleep why not try him with a sedative such as lorazepam should give you 3-4 hours sleep.


  • Tim have to try something, he is getting steadily worse :(

  • oh dear I hope you have a better night today. We need our sleep our we can't function with out sleep, that is what I say to George, not that he takes any notice, he pulled out the catheter, nurse came in and had to put it back in, happy to say he did no damage to himself. Xxxxxxxx

  • Yvonne, I can't get it through to him. I feel like a zombi. Increased his med today, just a half of a lower dose at the Dtrs suggestion. Will see what happens. Have to wait until 9:00 to give everyone their last doses of meds and praying he sleeps tonight. You were lucky George didn't hurt himself. Could have been a disaster to say the least. xxxx

  • Yvonne, he seems to be moving better, so fingers crossed. Of course he almost rolled down a small slope but was able to catch his balance and stayed upright, thankfully. And yes he had his walker. I am still a zombi since he is still not sleeping well at night. xoxo

  • Charles was on Sinemet 4 tabs 8 times a day. That was his highest dosage before a new neurologist took him off and they then diagnosed him with psp. His movement was better for a short time after being off it. But about a month later he was put on hospice. His doctor said that in his case the Sinemet was bringing on the symptoms of psp faster. He said it works differently with each patient. That is why they took him off. But they did it gradually over a weeks time and tested him a week later. Good luck hope you find something to help him and you. Also after this all took place I bought a urinal with a bag for collecting. It has been a lifesaver for me than and now. He liked it also because he didn't have to get up.


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    Advantage Urinal Systems and that will come up and use the rest of the info for the right one.

    Also to clean it just use a teaspoon of bleach and run water through it. There is no replacement parts.

  • AlmaJ67, thank you for the urinalysis info. I can afford this one.

  • I just ordered the Afex system. It should arrive next week. Here's hoping.

  • From where and what is it?

  • Never mind eastern, I found it and its expensive

  • Yes, it is, and the insurance won't cover it. We've tried straight and Foley catheters though, which were no good. I'd give a lot for a nights sleep. Trying it out, fingers crossed.

  • Please let us know, that l am not sure as to which one you got. But am looking forward to hearing about the results.

  • eastern won't he use Depends or can't?

  • Depends plus guard fine for daytime, inadequate at night, and he keeps getting up every couple of hours to use the urinal, but still wets through the depends. I'm exhausted.

  • eastern I know the feeling. I put 2 Depends on D at night plus the guard. He gets up at nite as well and manages to change himself some how. I find wet Depends on the floor in the bathroom even though I put a plastic bag in there every night. Not that i am sleeping, I hear most of what he does. I fell asleep yesterday afternoon when the aide came came so she did nothing I would have wanted her to do except wash clothes. Grr

  • Insurance won't cover a lot. But sometimes the VA will. Did you contact them?

  • The VA is great, and I did apply through them. No dice. We were up all last night, five clothing changes, and this morning I discovered the package with the new system on the front steps. It had arrived yesterday. Dang. Here's hoping tonight is better. Getting to work is becoming very hard. I need some sleep.

  • eastern, Sleep, yes that would be nice. Fingers crossed you have a better night. Let me know.

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