Night noises

[jzygirl]

Has anyone noticed there loved ones shout or make strange noises at night. It has been going on for a while but it seems to have got worse over the last couple of weeks. And because it wakes me with a start it does take me a while to get back to sleep after. So I'm now getting sleep deprived big time. Janexx

[Heady]

Hi Jane, S did go through a phase of this a few months ago. Shouting, jumping and making funny noises while breathing. Seems to have settled recently, unless I am learning to sleep through it. Don't think so, as I am a very poor sleeper at the best of times. Oh to go to bed at a sensible time and wake up 8/9 hours later, even 2 hours would be nice!!! I wish they could find a drug that helped the bladder problem, that's the bane of our lives!!!

Lots of love

Heady

[jzygirl in reply to Heady]

Brian is incontinent now so we dont have any problems about getting up for the toilet. At one stage it was at least 6 times a night. he now doesn't have any sensation in that area so he doesn't even know if he wants to go or if he is wet. Its been the jumping legs and semi choking now the very loud noise it's almost like a yell of pain. Yes a whole nights sleep would be fantastic think it must be at least 4 years since I slept for more the 3 hours in one go. Janexx

[cabbagecottage in reply to jzygirl]

Since stopping using the patch my husband doesn't choke at night as much

[nanonthenet1]

My lovely man finds it so hard to change positions and he has this very loud breathing so just turning over can take 20 mins, and the possibility of falling out of bed..... Xx

[cabbagecottage in reply to nanonthenet1]

Has he got a bed grab rail

[Heady]

Mine is now on Sinemet that is slow releasing at night. Think this might have helped. It's a half dose, or something like that! S also, can't turn in bed. Just stays where he lands, pain, if it's half on my side!!!

Lots of love

Heady

[cabbagecottage in reply to Heady]

My husband would wake me and ask to hold his hand or give him a push to turn over . We now have a hospital bed , he doesn't mve all night now . I keep the legs knee part raised a little and the head of the bed

[nanonthenet1]

Have a glass of wine Heady, dulls the pain xxx

[peterjones in reply to nanonthenet1]

heady have two glasses mate it dulls everything peter jones queensland Australia psp sufferer

[nanonthenet1 in reply to peterjones]

[nanonthenet1]

I second that Peter xx

[peterjones in reply to nanonthenet1]

thanks nanonthenet I think I will have a third one just to make sure see yerrrrrr peter jones queensland Australia psp hic sufferer

[peterjones in reply to peterjones]

hi heady well mate I am going away for a quick weeks holiday down to ballina in NEW SOUTH WALES and then having coach trips for days out when I get there so I will look forward to it I will not be taking my puter with me so see you when i get back give my regards to S for me I wil;l be leaving on weds by the way mate peter jones queensland australia psp sufferer I hope I will be ok and no falls especially at the dinner table see yer mate

[easterncedar in reply to peterjones]

Have a wonderful trip, Mr. Jones! The way you get around is inspirational, you know. We are snowbound now, and my work won't let me go anywhere until summer, but Mr. C is thinking about where we should go for vacation then, and planning for that will help us through the winter. He's had a couple of bad falls, too, but was driving the big snowplow for an hour yesterday. Me, I was trying not to watch! But he did fine. So we'll miss you while you're off gallivanting but hope to hear all about the fun you had when you get back. Good luck with the pokies, if there's any of that going. Happy days, Easterncedar

[peterjones in reply to easterncedar]

hi ec and mr ec or mr &mrs ec thank you for your promt em mates I cant think of anything being more terrible than being snowbound although I am starting to feel the heat a lot more now than I used to but I will blame psp why not everybody seems to blame it for something or another but I do not remember my body feeling so hot\\\\ I hope mr c is ok with all that snow its only 29 but the humidity is high which knocks yer socks off here mate well having a snow plough certainly beats doing it with the shovel I must admit but taske care mr c i know you will made any good snowmen lately you pair of cedars if not why not\

that good fun for getting frozen isn't it mates ive just seen my you know the one between L==AND== X COME BACK BUT ITS GONE AGAIN NOW IVE TRIED IT WELL WE ARE GETTING OUR

ROOF PAINTED AGAIN WE HAD IT DONE ABOUT

7 or 8 YEARS AGO SO NOW ITS TIME TO CHANGE it I might do my hair as well whoa no thats no good my mrs wants it painted charcoal grey ive already had the grey bit for a few years now so I will have to wait another 7-8 years then have another try that will only make me 86 or 87 so will be quite a young rocker or something

well you two cedars I will say cheerio for now

keep the snow moving see yer peter jones queensland Australia psp sufferer oh I forgot to ask did santa come down your chimney or was your fire to big \\y\ see yer take care mr c no more falls this year thats what im tell myself everyday I get out of bed but I ve been wrong every time

but never mind still breathing I shall be on the bike when I get back from my holiday so watch my dust from the rear wheels matey\\\

[Heady in reply to peterjones]

dont say you are going away too loud. You never know, if PSP doesn't hear, it might not realise you have gone away. Certainly, don't pack it!!! S and I, normally manage a couple of days, when we are away, before the blasted thing catches up with us. Worth all the extra agro we get when it arrives, just to have a couple of days free!!!!

Have a really good holiday, I won't say behave, just be careful and make sure Mrs J has a good time!!!

Lots of love

Heady

[peterjones in reply to peterjones]

hi mr and mrs cedar hows it going ok I hope and no more nasties \\ well we had a lovely time away the accommodation was lousy that's the in word for no good but the people were absolutely lovely and they allowed me to get my two pennyworth in or let me talk without interruption which is a rare thing these days even if you do not have a disability \\wee went out every day on a coach when it came time to get off everyone used to wait until I had got off first not last which is another rare thing

because everybody thinks they are going to miss out on something which of course they don't but thats human nature for you but this mob were exceptional and there was always someone to help me if I looked like falling over \\ a lot of people ask me what I had it ranged from a stroke to old age and as usual nobody had ever heard of psp im glad I stayed there because even though my wife got them to change rooms for us it was not much better than the first one we had she was going to demand our money back the people made up for it I am very pleased to say\\\ the coach driver was excellent to everywhere we stopped my walker was first out of the luggage compartment\\\

and also we had entertainment every almost night so all in all it was pretty good but I would not go back there again my poor old legs were killing me by the time I had finished getting on and off the coach stairs up to get in the coach mate and out of but never mind I put it down to older age well I hope mr c has been behaving himself while I have been away

I only had one fall and THAT WAS OUT OF BED ONE MORNING well you two cedars thats my lot for now so see yer take care of yourselves

until next time peter jones queensland Australia psp merchant

[peterjones in reply to easterncedar]

hi ec and mr ec or mr &mrs ec thank you for your promt em mates I cant think of anything being more terrible than being snowbound although I am starting to feel the heat a lot more now than I used to but I will blame psp why not everybody seems to blame it for something or another but I do not remember my body feeling so hot\\\\ I hope mr c is ok with all that snow its only 29 but the humidity is high which knocks yer socks off here mate well having a snow plough certainly beats doing it with the shovel I must admit but taske care mr c i know you will made any good snowmen lately you pair of cedars if not why not\

that good fun for getting frozen isn't it mates ive just seen my you know the one between L==AND== X COME BACK BUT ITS GONE AGAIN NOW IVE TRIED IT WELL WE ARE GETTING OUR

ROOF PAINTED AGAIN WE HAD IT DONE ABOUT

7 or 8 YEARS AGO SO NOW ITS TIME TO CHANGE it I might do my hair as well whoa no thats no good my mrs wants it painted charcoal grey ive already had the grey bit for a few years now so I will have to wait another 7-8 years then have another try that will only make me 86 or 87 so will be quite a young rocker or something

well you two cedars I will say cheerio for now

keep the snow moving see yer peter jones queensland Australia psp sufferer oh I forgot to ask did santa come down your chimney or was your fire to big \\y\ see yer take care mr c no more falls this year thats what im tell myself everyday I get out of bed but I ve been wrong every time

but never mind still breathing I shall be on the bike when I get back from my holiday so watch my dust from the rear wheels matey\\\

[nanonthenet1]

Haha, enjoy, ive just finished off the Christmas chocs

[peterjones]

good on yer mate that's another few kilos to worry about mate peter jones queensland Australia

psp sufferer

[Cazmat]

Hi My hubby suffers with CBD and has been making these noises for a few weeks now . He has no communication at all so I don't know if he's in pain or not. He can't turn in bed but his legs are moving all the time ( he has no control over his limbs) and as he sleeps in a hospital bed this creates its own problems as the sides and everything rattle all night. As you say a full nights sleep would be great and if he could speak Martin would probably say the same thing. I love him more than anything but wish this could all end I hate seeing the strong loving man that I married 39 years ago end his life like this ( you can' t even call it a life anymore) , sorry for going on another bad night xx

[DenB in reply to Cazmat]

Hi Cazmat

My husband also has CBD and makes awful frightening noises if he worries that he is going to fall or he is seriously anxious about something.

How long has your husband had this awful disease? Roy, my husband started to have signs approx 4 or 5 years ago?He can talk at times and then struggles at other times. D

[Cazmat in reply to DenB]

Hi D

Martin's symptoms started in 2010 with speech and language problems, after a lot of backwards and forwards to visit neurologists and SALT he was diagnosed with Parkinson's in April 2011, he took early retirement from work and we retired to the North Wales coast, something we had always wanted to do. On seeing a new consultant in March 2012 he was told it was CBD. At this time he still had his speech could still walk several miles and was totally independent all be it a little unsteady at times. The turning point for us was February 2013 he had a seizure whilst driving luckily we were ok but he had to give up driving. So a decision was made to move back home where we were closer to our daughters and grandchildren. We moved in November 2013 Martin was still fairly independent but not able to walk such distances by February 2014 he could no longer walk, talk or do anything for himself he needed hoisting from bed to chair and could no longer wash or go to the toilet he was catheterised in April and had a PEG fitted in August. It has been a nightmare for everyone but especially for Martin. It's been over a year now since I heard his voice or he held my hand sounds silly I know but before this horrible illness never a day went by without us saying I Love You and we held hands like two soft kids these are the things I miss more than anything that and sitting and having a meal together ( he needs feeding now when he is not using the PEG )

C xx

[DenB in reply to Cazmat]

Morning Cazmat,

Thanks for your reply. I find that it is the little things that you miss, most, sometimes.....like the talks and the walks and even the small intimacies like holding hands or cuddling ,oh and the sharing of the most ordinary of things like seeing a robin in the garden....Roy just isn't really interested in anything much theses days.

But I read with interest the time line with your dear husband...I know not everyone is supposed to be the same but these days are coming to us ,I know, I just hope not today!

My heart and love go out to you both

D X

[cabbagecottage]

I have put lagging that they use for pipes along the rails strap them on with micro pore tape lol stops heating themselves .

[zuzanka2]

Dear Jane! My dad does the same! Shouts and yells at night like he suffers from great pain. My mum doesnt know what to do anymore..... Cant sleep and get nervous and thinks he does it on purpose my family lives in Poland and there is almost no information and support there. i wish you all the best and thank you for this website xxx anna

[Heady in reply to zuzanka2]

Hi Anna, why don't you get the PSPA to send you their information packs and send them on to your mother. There are booklets for the professional as well. I always make sure I take those, when S is visiting the dentist, opticians etc., in the knowledge that they will not have heard of PSP before. Don't know if they print in any other language, other than English, but you could always translate if you need to!

If you mother speaks English, I would definitely get her to join this site! Everything I know, comes from here. Not one professional has EVER sat down with us and explained what is wrong and what the future holds.

The only other thing to do, is ask questions on her behalf and print off our replies. Make sure you say that's what you are doing, so people don't go wandering off on another subject!

Lots of love

Heady