PSP Association
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Side affects or infection

Scopoderm patch applied on friday evening. Saturday saw no differance. 2am Saturday night Brian was up and it was a case of one up all up.

So onto Sunday I was tired and he was nasty so consequently he was in bed at 7. Sure was a case of chatter box. I dont think he shut up once during the night. Sleep talking all nonsense but still yacking on and this morning its everything is funny.

He seems to be in his own little world chatting and laughing. Driving me mad. Janexx

12 Replies

Hi Jane, Des is on Gobopentin for the never ending neck pain,that too makes him "silly" and has no balance at all even sitting down.We have cut the dose down a bit,moderate pain, moderate sense now.I had an appointment myself at hospital last week and a friend sat with Des I felt better for the break and am looking forward to a trip to the opticians next month when daughter is coming to sit with him.never thought I would look forward to an eye test!Still I can escape for short times Des is stuck with it 24/7,

Take care of yourself,Px


Where do you live Loppylugs . We live in UK and have recently started to have a sitter one day a week for three hours from Crossroads . it is free . I had Been getting out but for only a very short time . I am never out long now but hOping he will get more comfortable with it and be able to stay out longer with my daughter .

I have found it very hard to leave him , we did everything together .


Hello Cabbagecottage,We live in a village 10miles south of Bath between Trowbridge and Frome.Crossroads does sound like a good solution and two or three hours a fortnight would be lovely.O/T came today offering some gadgets to help,and then a friend of a friend phoned offering to deliver cakes I will make for a MacMilan coffee morning,AND the plumber came and did the shower so this is a great day so far!I will try to research Crossroads on line THANKYOU P


hello again Loppylugs . Glad to be of help . Anytime . Makes my day if I think I have been , Inam grateful for any advice or help .

Crossroads is free and funded by the government . I Signed with them quite a while ago a friend had used them . Someone will sit for a few hours for you have some time to go shopping Orr just a break . if you became I'll had to into hospital at short notice they will send someone to stay for 48 hrs until something else can be sorted . it was why I joined . It's only five weeks ago we started to use them . In fact my daughter took me out to a lovley garden centre . We normally don't go very far away I worry that he might need me , now I know she will ring me if needed . I go out abouT 20 mins before she comes , I know she will let me know if she can't make it , and leave notes of anything I need her to know . Awhile I was out she rang me to check something I leave any telephones she might need .

I believe Age Concern also do a similar thing .

We have been having carers morning and night and I know that, I could probably arrange for the same company to do a sit but they send different people each time . Crossroads stick to the one .

How old is you husband . John is 80 I am 77 . and still able to do a great deal for him myself , in fact the cares have little to do but at least my daughter knows someone is coming in first thing and at bedtime . They help hoist him into bed .

Accept any aids the OT offers . Don't be proud . We were for far too long it nearly killed both of us . It is much easier now we have the aids . The district nurse , she comes to takes bloods to check his warfarin levels . she arranged for a hospital beds , a great help . eventually the OT had portable ceiling hoists .

Obviously I don't know how your husband is , no two are the same or at the same stage of the illness .

I think we are more fortunate living in Wales as far as payments for care . nAt the moment however much income or savings you have you never pay more th £55 weekly , whatever your needs . It should be the same for all of us . .


Thank you thank you thank you for posting this subject . So I am not going mad .

My husband has a big problem with drooling and will try anything to see if it will help . In the first place was given Kwells to help dry his mouth . Very soon after taking it I could see he was beginning to act differently so stopped it . I was worried because he had an episode after first taking strong painkiller after a knee op where he was confused . He woke one morning very agitated and kept on insisting I ring his boss and tell him he couldn't get into work he had retired ten years previously . The next time if happened was when given DIGOXIN for his heart had a dreadful few days until I realised what it was and stopped them .

we tried the eye drops under the tongue and immediately the same thing happened . Gave up on that .

Last week the GP suggested we try Scopodetm patch . We did do apprehensively after a few hours the same thing started , I removed the patch . It does say it can take a while to pass through the system . He was dreadful for three whole days and nights . I had to sleep downstairs with him . He would not shut up with garbled voice I couldn't turn my back , he was wide eyed and coming out with the most ridiculous stories which when I could grasp a word . seeing people some friends who he related to items he had been looking at on the news . I could go on and on .

The fourth day he calmed down and slept and slept . He must have been shattered . I know I was .

He walked into the consulting rooms eight years ago was given Sinemet and eventually neupro patch . I kept telling them nothing seemed to help but at the same time thought it was prob progression . Eventually I decided to tell them I wanted them to stop the Patch and ahave since even reduced the Sinemet . I do wonder if he had never started taking anything how much worse he would be . . It is a minefield . We are not the professionals after all .

He is now housebound and hoisted to his chair , commode , and bed .

Even as a young man if he was a bit off colour I would suggest he took a pain killer but he insisted no t,hey make me feel funny . a maybe he is very sensitive to any meds .


Having said all that it did dry his mouth up but he his tongue was twisted and he couldn't make any sound all all . very frightening


That's our experience . No two people the same of course .


Hi cabbage cottage

Have you tried amitryptiline? 10 or maybe 20mg in the evening works for my hubby for drooling.

Good luck, maddy


My husband tried the Scopoderm patch but was very upset when he woke up as his tongue appeared to fill his mouth and he could hardly speak.It had an adverse affect on him so we didn't try again.Good luck.


New patch went on monday evening best nights sleep we've had in months. He is fully awake and with it on Tuesday so I think it was worth giving him time to settle down. Good luck to all. Janexx


Glad you managed to get a good night sleep. I don't have a problem with Jim at night goes to bed at 7pm and stays there until 9 am. It makes up for the rest of the problems during the day. Hope it keeps working for you. Denise xxx


so happy for all the people these meds worm for . so wish they did for us . Yes we have tried the Amitriptyline in fact he did go up to 30 mg , we stopped them thinking they might be making slower but thinking about it I don't think they were very much . He has now been taking them but only 10 mg . I think I might leave it a while then try a higher dose again . I cannot quite remember if they dried his mouth that much but they might have done . Thank you for that .


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