TIRED

[Auddonz]

Does anyone have trouble staying awake. Don is very tired all of the time, seems to wake up more in the late afternoon but is in bed by 9:30. Med or PSP?

[Hidden]

It seems like my husband goes through stages with being tired. And I have noticed it always occurs on one of his bad days or stretch of days. Which is probably a good thing because he sleeps more so has less time up and about stumbling around risking a fall.

[Auddonz in reply to Hidden]

jmhk, it is not on a bad day or good day just all of the time. I am confused.

[Hidden in reply to Auddonz]

Is he on one of the Parkinson's meds? My husband couldn't take any of those. One of them made him sleepy and tired all the time. He slept most of the day.

[Auddonz in reply to Hidden]

yes he is jmhk but it is helping him in so many other ways.

[easterncedar]

It seems with my guy, four years in, that everything takes so much effort, walking, talking, thinking, seeing, that he is very easily exhausted. He sleeps a lot, especially after an event or special effort of any kind. His doctor recommends a cup of coffee. It helps as you would expect. I wouldn't worry about it. Enjoy the time off while he sleeps. Easterncedar

[peterjones in reply to easterncedar]

hi east ern cedar and mr cedar please do not think I am going to feel sorry for you mate just cos you have a few cat naps during the day mate I have had lots of falls matey but im not whinging about it im still up to this bike race mr c and I don't want to see you falling asleep while I am out in front looking behind me to see where you are so best foot forward again mr c you know you can do it and I know you can '.so take care mr c and mrs c my bike is in peak condition now mate and so am I so you had better be up to it matey see yer peter jones queensland Australia psp sufferer

[easterncedar in reply to peterjones]

Hi, Mr. Jones - so glad you're still up for the race. Mr. C climbed quite a hill using his walker on Sunday while we were out touring a garden, after having toppled into a peony patch at the bottom. I was a bit afraid we'd get stuck halfway, but he marched on like a hero, and we made it. I think he's still up for the bike race. More training!

All the best, EC

[peterjones in reply to easterncedar]

hi mrs eastern cedar and mr big cedar whats this I hear about you going up a big hill with your walker mr c are you trying to frighten me mate well matey I went down a big hill how about that then ;;;;;;;;; I must admit I have had quite a few falls this past month and it has shaken my confidence just a bit matey but I can overcome that my friend =cos when I get on that bike

i am like a powerhouse so make sure you have enough training to keep up with me now that's out of the way;;;;;;;;;;;; how are you battling ;;;;;; ok I hope don't let it get you down mate I reckon that we have done ok with this psp so far don't you mate when i read some of the posts etc how some of the poor blokes are going along I feel very grateful that it has been slow

and we are still able to get about the way we do even though the falls tally is getting a bit worse each time im beginning to look like Sylvester stalone or rocky bel bower these days with my scars on my arms and legs and head and ear and uncle tom cobley an all but not to worry mr c you and me are champions

I wish that all the people I have read about was the same level as us matey anyway mr c take care of yourself and your mate she sounds a good one mr c so look after her I probably should not have written that because she will probably read this to you

oh what the heck see yer mayte chin up and best foot forward

peter jones queensland Australia psp sufferer

[easterncedar in reply to peterjones]

Hi, Mr. Jones! You made me look up Uncle Tom Cobley and all, so now I've learned something for the day, thanks! Yes, it's quite wonderful how resilient you and Mr. C are. At least if you are falling it means you are getting around, and, as you say, there are plenty of folks who can't do that. We've had our share of disasters lately, though, with the flood in the house after he fell and smashed the toilet tank in the early hours of the morning. Fast as I got up to shut off the water, there was still a fair bit sloshing about, running through the ceiling to the room below. Mr. C had just a nicked pinkie toe, though, so no real harm done!

The bathroom and kitchen are trouble spots, for sure. Too many turns required, or something.

Anyway, the weather here is gorgeous at last, and I'm thinking how nice it will be when I can take some time from work - soon, I hope - so we can go to the beach and sit and watch the waves. Like you at your gold coast!

Keep on biking, Mr. jones, we are coming along behind!

Love and peace, Easterncedar

[Auddonz in reply to easterncedar]

easterncedar, with his heart conditions and high blood pressure, not allowed caffeine. Seems from what everyone else writing that it is the PSP and poss the med, which is helping a lot thankfully at the moment. Supposedly shouldn't but I am happy that it is. Of course getting rid of the UTI probably is a biggie as well.

Audrey

[jillannf6]

hi peter j

good to hear tha tyoru bike is up and running and i hope you are too!

lol jill

[peterjones in reply to jillannf6]

hi jill mate hows it going well im in perfect health thanks well i would be if this psp wou;ld let go of me im really looking forward to this bike race matey I feel like a finely tuned car ============ that has had the wheels taken off of it but don't tell mr cedar that will you matey so see yer take care see yer peter jones queensland Australia psp bloke

[jzygirl]

I'm afraid it is part and parcel of psp. Fatigue is mentioned in all the information about psp but it is not something they are able to deal with and as time goes on it does get worse.

Brian can fall asleep half way through eating or mid conversation. Janexx

[Heady]

Hi, yes, I think it's PSP. S will sleep on and off all day if I let him. Don't forget, that even breathing takes a lot of effort. Practically everything they do, has to be thought out, then they to work out how to do it, then the hard bit, actually doing that particular task! And that's just how to pick up a spoon! I'm surprised that S is not more tired, when you think about it!!!

Try to have times for sleeping, make sure he is active at other times. Boredom doesn't help. If we are doing something, S will last the whole day, other days, when we aren't doing much, he will sleep for England! Mind you, he needs days that all he does is sleep. I am in the middle of getting him up, toilet, shower and dressed, back to the toilet, then he has to have his breakfast, he will be back to sleep, within seconds of putting his spoon down! I often join him, cause I need a rest after all that as well.

Like the others have said, don't worry, take advantage and have a nap yourself. You could always mention it to your doctor, next time you see him, just to make sure that nothing he is on, is making things worse.

Lots of love

Heady

[Auddonz in reply to Heady]

Heady,

I intend to speak to his Dtr. He to goes to sleep after meals and is getting ready for bed by 9. He used to go to bed about 11 but since this everything has changed. He falls right to sleep but I toss and turn.

Love back

Audrey

[Heady in reply to Auddonz]

Yeah, I know, you start to doze off and suddenly he needs to go the loo! Or else starts making some very loud snoring noises that make you jump out of your skin. The worst I find is, my bladder is now use to emptying every couple of hours, so when he doesn't wake, I'm lying there wishing for him to wake, so I can get up and go, because I doesn't like to disturb his sleep. Hey ho!!!

Lots of love

Heady

[Auddonz in reply to Heady]

Heady you are to much

Love back,

Audrey

[formercarer]

My mum did go through a sleepy phase, at the beginning of her illness. Once I became her carer though she seemed to wake up. It may be that the Co enzyme Q10 I gave her helped. I did keep her stimulated during the day so that she might sleep more soundly at night. She went to bed at 9.00pm and generally slept until about 8.00am with several night-time toilet calls.

[Hidden]

Yes my wife sleeps a lot during the day - and also sleeps through the night thank goodness. The nurse says it is probably boredom which is not surprising as she doesn't really do anything except sit in the chair.

[Auddonz in reply to Hidden]

john-R, from everyone else who has answered the consensus seems to be the PSP.

[GillJan]

My husband tends to nod off during the daytime more these days. He used to stay up till past midnight but I have noted he is now coming to be around 11pm to 11.30pm and doesn't seem to wake before about 9am and enjoys laying in. I believe it is part of PSP but as yet he is not fairing too badly. He can still walk on his own around the flat and with a walker outside he can go a long distance. I had noticed his balance was getting steadily more unstable, so the neuro doubled his meds again and that has at least stablilised him again. My biggest problem at the moment is encouraging him to eat - he has lost 2.5 stones in just over 6 months and says that most of the time he can't be bothered to eat. Getting round this by making food and presenting it through the day and at least that is working as he feels guilty with how much I have to do these days and if I have put myself out to make him something he does eat most of it, sometimes have to cajole him to finish but I am hoping to turn the weight thing round as he would loathe to be on peg feeding.

[Auddonz in reply to GillJan]

Gilljn, sounds like they re somewhat alike

[Folliott]

Jim sleeps most of the time, particularly after a day at ADP. He comes home at 3 and goes straight to bed. Most times I can't get him up for supper so make a smoothie with ensure to make sure he gets his nourishment. Eating exhausts him as well. We went away this past weekend to an event and stayed overnight in a hotel. He enjoyed his time with his club friends and being in the parade the next day but slept most of the 4 hour trip home off and on. His whole system was upset yesterday. Restless and bowel incontinence but the whole trip was worthwhile. I expect today he will settle in and get back to his normal routine of eating and sleeping.

[Auddonz in reply to Folliott]

Folliott, what is ADP? He goes to bed at 9, used to stay up till 11. He keeps on saying I am so tired. We don't go anywhere except for Dtr. I am afraid he won't be able to walk to far in a Dept store so......

[Folliott in reply to Auddonz]

Adult Day Program. He enjoys going as I said but exhausted for the next day.

[Auddonz in reply to Folliott]

Since Don was diagnosed on March 20, and his symptoms were much more then. Since being on the dopey meds he has responded very well to them. Th nurse said he is lucky and I would like to get him the Mayo clinic but they are not taking any appointments.

[abirke]

PSP B is in and out of sleep all day long.

[Auddonz]

abirke, Glad I have the answer from you. TY Is he on the what Don calls the dopey med?

[Folliott]

The only meds that Jim is on now is warfarin for his artificial heart valve. So it is not the meds for him that causes this. It is the PSP

[Auddonz in reply to Folliott]

Folliott, Don is on that as well as what he he calls his dopey med. High blood press meds as well.

[peterjones]

I WOULD SAY LET DON SLEEP;;;; WHILE HE IS SLEEPING YOU CAN RELAX A BIT MORE BECAUSE HE IS NOT FALLING OVER AND IS NOT UNDER YOUR FEET SO TO SPEAK SO MAKE THE BEST OF IT MATEY WHILE YOU CAN PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER '

[peterjones]

PROBABLY A TAD TO LATE FOR THIS MATEY BUT I WOULD SAY A BIT OF BOTH

PROBABLY MEDS AND PSP MAKING HIM TIRED I FORGOT TO PUT THIS IN MY LAST MAIL TO YOU MATEY PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

TAKE CARE AND LOOK AFTER HIM FOR ALL OF US GIVE HIM MY REGARDS

[Auddonz]

Thank you peterjones. You reaffirmed my feeling that it is both that causes it. He has stopped pt and ot since medicare won't cover it anymore and I spend my day badgering him to at least walk. He is very stubborn which drives me nuts. Keep on telling him that if he doesn't walk and do them he will be bed ridden but he just doesn't get it. Gave him you regards and TY.

Auddonx (aka Audrey)