My husband either moans and groans ALL day long or he coughs constantly. It is awful for him but drives me mad but I know he cannot do

[dorothy-thompson]

much about it.

Dorothy thompson

[MaddyS]

Hi Dorothy

Sorry to read your message. The same is happening here and I have no idea what to do about it. I feel so sorry for him, unable to talk and walk and now this. It makes me feel helpless, frustrated and tired. Sorry I'm of no help, writing this down makes me feel a bit better, hopefully you feel better too. Maybe someone on this forum has some helpful hints. Take care, maddy

[peterjones]

hi Dorothy Thompson your right of course it is dammed annoying when someone keeps coughing or moaning and groaning I can understand how you feel mate and I sympathies with you I really do but also like you said that he cannot do much about it \\\ I also know that he will be fed up to the eyeballs

with it himself especially when you are trying to watch tv\\\\\ I have been down this road mate and it seems like the more you try to be quiet the more noises seem to come out im afraid to say \\ but I have not received the broom handle yet but its been awfully close mate I can tell you \\ anyway mate just have a little bit more tolerance with your other noisy half and you are right again we cant help it mate\\\\ we did not ask for this psp so invest in a set of ear plugs \\\ see yer peter jones queensland Australia hope this solves the problem psp sufferer

[NannaB in reply to peterjones]

Hi Peter, I've just read your reply to my husband and he laughed his funny little humming laugh. When he starts moaning and groaning I say," You're being a teddy bear again and he laughs". He can't communicate much so it's good reading your posts as I get a better insight into how he feels". Keep blogging Peter Jones Queensland Australia.

[peterjones in reply to NannaB]

hi nanna B hows it going ok I hope and what about the teddy bear hows he doing

very good I hope again he knows whats going on mate he may not be able to communicate but he will know whats happening around him mate anyway thanks for replying\\\\ have a great day both of you and take care see yer peter jones queensland Australia psp sufferer

[NannaB in reply to peterjones]

Hi Peter, My teddy bear isn't doing too badly, good days and not so good days. Every night when he is in bed I ask him if he has had a good day and he always puts his thumb up. Today there was me and ten others here all playing ukuleles and he managed to clap along with the music. Sometimes his growling was even in tune, growling along with golden oldies. He likes these uke sessions as all the ladies give him a hug and a kiss when they arrive and when they leave and the men shake hands and say something funny to him. It's good to see him involved. I'm going to bed now as you are probably about to get up. Have a good day Peter Jones, Queensland, Australia.

Nanna B. Kent, England.

[peterjones in reply to NannaB]

hi nanna b its good to hear that your husband is still trying mate even if he groans along to the music he is still trying thats the main thing well I hate to say this but the sun is shining again here after the cyclone and its typical Easter weather just starting to get a little bit fresh in the mornings but not as fresh as it is over there we are going away in the caravan while we can still do it we go with the caravan club

anyway im off so to speaki

with the van i mean so see yer nanna b take care best wishes to teddy bear tell him to keep up with the good work mate see yer peter jones queensland Australia psp sufferer

[goldcap in reply to NannaB]

NannaB. I want to live in your household! JG

[peterjones in reply to peterjones]

hi nanna b hows the teddy bear getting on ok I hope \\ I have been away for a short break with the caravan club we went to a small village and 66 vans camped in the showgrounds for a week directly I got there there was a bloke to help me set up which was great my wife and I had a real good time there and on sat night I even partook of a drop of scotch just for medicinal purposes you understand but boy did it burn my throat on the way down but I think it done me good because I could not understand a word the other bloke was talking about but he understood my conversation to him which was marverlous I thought seeing as I did not know what I was talking about myself anyway but it made an interesting trip away mr teddy bear \I am still in the very very fortunate position that I can still get about with some help\\ but how long for I do not know\\ I would have loved to hear the ten of you mall playing the ukelee I never could spell ukelellie I bought some for my friends when I went to Hawaii a few years ago now I bet you all sounded great\\ well me old teddy bear stick with it and keep up the good work I shall expect your wife to tell me that you have been dancing and smooching next\\ so do your best mate\\ and mrs nanna b he is a lucky man to have a carer like you take care both of you in THE GARDEN OF ENGLAND \\ KENT see yer peter jones queensland Australia in gods own country

psp sufferer

[NannaB in reply to peterjones]

Hi Peter Jones, Queensland Australia, I've only just seen your post. I had notification that Goldcap had contacted me and then saw yours. It's great you had a good time away and I'm so pleased you can still get around. Has your caravan been adapted in any way? My son won a caravan holiday last year but couldn't take it because he wasn't permitted to take our grandson out of school. He offered it to us but I knew I'd never be able to get my hubby out of a low bed and Toilet facilities would be difficulty. We both laughed when I read your description of your tipple taking. Perhaps I'll understand my hubby more if I give him a drink. We had a New Year's Eve party here this year so my hubby could join in. Several of the guests were from our church. The next time we went to church, lots of people came to me and said they had heard how my hubby had nearly died drinking champagne. I don't even remember the incident. Not because I was drunk. He coughs so often, I probably just helped him like I always do but apparently it was a shock to all our guests. What a way to see the new year in. People are still talking about it. The uke group sounds good but only because there are a lot of us. We don't all play all of the chords but if we miss some, it doesn't matter as someone else will keep playing. We went for weeks not realising that one man only ever played c and mimed the rest. We do laugh a lot. It's looking good here in the Garden of England. I took Colin for a walk in his chair yesterday to see the bluebells in the woods. I couldn't get him in the woods but took him to the edge so he could smell them and then took photo's on my IPad so he could see what they look like. Well I had better go as my 2 year old grandson spent the night here with our son and he is giving his grandad a ride up and down on his reclining chair. He just loves pressing the buttons. C is laughing but I think he may slide to the floor when it's at it's highest as he still has his shiny silk pyjamas on.

Take care Peter Jones, Queensland, Australia, PSP sufferer. X

Nanna B and Teddy Bear.

[peterjones in reply to peterjones]

HI NANNA B HOW IS THE TEDDY BEAR TODAY OK I HOPE AND DID YOU AND TEDDY JOIN IN MY SONG HOME HOME ON THE RANGE IN EM TO ROLLIE OR NOMANS LAND I HOPE SO OR HAVE YOU BEEN PLAYING YOUR UKE WITH THE BOSTON PHILERMONIC TONIGHT SOMETHING MORE EXCITING THAN HOME ON THE RANGE ANYWAY GOODNIGHT TEDDY BEAR HANG IN THERE MATE GIVE ME THE THUMBS UP MATE

THATS GREAT THANKS FOR THAT SEE YER PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[Charliesyoungest in reply to NannaB]

NannaB. My dad has PSP. He still communicates somedays better than others and some days chokes, moans and even laughs. We have little funnies like your "teddy bear" saying u mentioned. I value those little ques n indirect communication that still brings out his laughter or smile. PSP is a terrible terrible thing! Thank u for sharing your "teddy bear" story! Made me smile n realize again how important the little things are!

[NannaB in reply to Charliesyoungest]

Hi Charlie's youngest, my husband rarely speaks but tonight he spoke to his night carer. She said to me that she thinks he said he wanted to do a wee wee but when she took the bottle to him he laughed. I managed to understand him. He was telling her that her supervisor came to "see me". We all laughed. I do believe laughter is the best medicine......prescription medicines don't help PSP do they.

Best wishes. Nanna B

[Charliesyoungest in reply to NannaB]

I love this, NannaB! Priceless!

[loppylugs5]

Hi Dorothy,it is the same here too especially at night even when he sleeps he moans and coughs. We have a brilliant array of cough mixtures and lozenges and a throat spray all to hand but I don't think any really help.It is good to come on this forum and find you are not alone,I try to make short trips out but the real pleasure for Des is when I ask if we should go home. Such a shame when the weather is good and we live in a lovely part of Somerset he doesn't enjoy it.Partly I think the eyes are a bit dim now so every day is a bit foggy.Sorry not to have a solution it is PSP driving you mad not your other half.Take Care of yourself Pauline

[jillannf6]

hi dorothy

i am so sorry you rhusband has go tot htis stasge in this psp journey

i canno toffer you much a tall - can he stilll talk at all or answer questions?

do you have a board from whih he can spelll things out fo r you or another carer?

lol JIll

[dorothy-thompson]

Thank you all for your replies, I must say I feel very chastened.

It is true, Peter, my husband cannot help it and it is awful for him and, you are all right, it is the PSP and not him.

Jill, I am able to get out as we have an excellent carer who comes every day but sometimes I just don't want to go back home. Of course I do though and when

we're on our own, I batten down the hatches so to speak and just get on with it. I sometimes feel like it's caring for the children again, very tiring but also a good feeing knowing that you have done your very best for them.

Take care and kind regards

DorothyT

[goldcap in reply to dorothy-thompson]

Dorothy, my husband is just starting to moan all night in bed-and cough. But I do say, I envy you being able to get out all day. He is still mobile so it I leave him alone he usually has a bad fall and then I feel incredibly guilty for leaving him by himself. I only leave him alone to go to the store or visit my son but still he manages to get hurt. This is really an awful life isn't it? I have said this before but I am sorry for you and sorry for me and sorry for our husbands who have this god awful disease.

Take care, Jayne G.

[nomansland]

Hi Dot,..no matter if I tell you we are in the same boat,for3 years now it will still take all your resources PLUS to get through the day....it is the illness but facts are facts,pray for strength...best regards ,Rollie

[easterncedar]

Oh dear Dorothy, of course it drives you mad! You're farther down the road in this than I am, but what you're going through is something I really dread. How can you keep cool when you have all the noise? No matter how sympathetic you may be for the sufferer. If you try to tune it out entirely, you might miss something you're supposed to take care of, right? So you get more agitated and exhausted. I suppose I'd try (I will try) music, either as background for you both or in earphones for yourself when you think it's safe to cut off your awareness of what sounds he is making. And then all the usual advice for trying to maintain your own calm center - breathing and exercise and such - and then, I don't know if it's anything you can find where you are, but in our natural food stores we have something called - believe it! - "Happy Camper", which is an herbal supplement I use when I'm feeling cranky and on edge and nothing is working. It may be a placebo effect, but it is harmless, and it helps me cope when I'm feeling as if my nerves are scraped raw and I want to bite someone! I take a couple of capsules, and in about 20 minutes I realize I'm not obsessing about what was bothering me any more. Other than that, all I have is sympathy, Dorothy - don't feel chastened! You're working so hard, every day. I hope I do half as well. Easterncedar

[goldcap]

Easterncedar

A glass of red wine works the same for me lol. But I am going to look into it for the daytime. BTW, how is your arm? JG.

[easterncedar in reply to goldcap]

Hi, JG! Oh, yes, a glass of wine is fine by me, as well - too bad it's frowned on at work, which is where I first found the Happy Camper so helpful. Thanks for asking; the arm is getting better, but very slowly, and it keeps me up at night - there's no good place to keep it while I'm sleeping - and the range of motion is still limited. I can still raise a glass, though! How are you and your guy doing? EC

[goldcap]

Hi Hi, we are doing ok. Finished moving the master bedroom downstairs after yet another fall on the stairs. It is right off of his home office so he actually likes it and has settled in. Cocky with confidence after installing two toilet seat risers with handles, I hurt my back lifting a platform bed to install a bedrail. It is nice and sturdy and he is quite pleased with it so I guess it was worth it. I swiped one of his back patches for pain and they work quite well. Sadly I have to forego my kick boxing classes for awhile. We had just begun to spar with partners too. I love putting on those boxing gloves and getting my aggravation out. Bring on the cranky pills right?! I am glad you are healing-albeit slowly and painfully. My back feels best when I lie flat. But then I tend to snore and he wakes me up by saying,"snoring" VERY loudly, and I turn on my side which is uncomfortable. Funny he has no problem making himself clear in this situation-HA! I thought of you in the midst of the move downstairs with everything in disarray. I used to be the type that would stay up for days to finish a project if need be. Now I have just accepted the fact that our lives have become an ongoing work in progress and getting enough sleep is paramount in my being able to function efficiently every day. We are going to downsize to a smaller house in the coming months. Maybe you can give me some pointers on moving Take care, feel better, JG