Hopeful : Today John has taken his first... - PSP Association

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Hopeful

cabbagecottage profile image
12 Replies

Today John has taken his first dose of Rivastigmine . he was described it to see if it will help his thoughts process ..

so my fingers and toes are crossed for a good result , although I am not holding my breath .

My main concern is that he might get nasty side effects . Something that can happen to him a great deal with lots of mess

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cabbagecottage profile image
cabbagecottage
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12 Replies
abirke profile image
abirke

Best of luck my prayers go out to you and John.

AVB

cabbagecottage profile image
cabbagecottage in reply toabirke

Thank you much appreciated x

jillysaffron profile image
jillysaffron in reply tocabbagecottage

Jillysaffron

jillysaffron profile image
jillysaffron in reply tojillysaffron

Hope positive outcome!;my sister has Parkinsons,isn't too good now,but has had a long period of being well 😊God Blessxx

NanBabs profile image
NanBabs

P has had the patch for several months now and I honestly don`t know if it has helped or not. As for side effects - well who knows ? Life is so chaotic anyway that I can`t say if it is exacerbated by the drugs or not !

Good luck though, it may just work brilliantly for you.

NannaB profile image
NannaB

I do hope it makes a difference and that there aren't any negative side effects. Do let us know how John gets on won't you.

In my thoughts and prayers for a very positive outcome.

X

Katiebow profile image
Katiebow

Hope it has the desired effect.

cabbagecottage profile image
cabbagecottage

didn't give the Rivastigmine this morning ,. John spent most of yesterday sat on the commode .Its a wonder you didn't all here th noise his tummy was making , along with the explosions . This can happen first thing in morning but not this extent ,

rang the nurse who is going to speak to the consultant . WaitiNg now to see whether to carry on or stop and maybe try another .

You can have it in a patch but his skin is very sensitive .

I don't want to give up too soon , maybe. His tummy will become accustomed to it ..

Has anyone. Else had this experience . .

busylizzy2 profile image
busylizzy2

Mum had that drug and didnt get on with it at all, made her aggressive and less mobile. Mum was then given Amantadine which has worked very well for her.

cabbagecottage profile image
cabbagecottage

Since then we have tried Menpmantine but that caused sleeping knocked out . So stopped again. trouble is he can have days like that anyway and the upset tummy . Don't know what is the best thing to do . if his tummy settles maybe I will try again . The nurse will call agin in Tuesday to chat about it ..

his tummy is more settled today . .

Heady profile image
Heady

S has been prescribed this, but in patch form. We haven't started it yet, as his skin is not very good at the moment. Let me know how you get on.

Lots of love

Heady

My husband has been on the EXCELON PATCH since this past December.   He has been lucky that he has not had any bad side effects.   We put a new one on him before he goes to bed each night.   I have seen a slight improvement in his hallucinations   We no longer have 3 or 4 people in the bedroom or children in the bathroom all the time.   We do have an imaginary dog who visits every day or occasionally gardeners outside (not really).  He still is forgetful.   I would say the most important thing is the dementia has not gotten worse and we are thankful for that.

It did take at least a month for the patch to fully work and an increase in mg's.

Good luck to both of you.

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