Good morning

[jzygirl]

Good morning all

Thought I would just give an update on Brian. Its now just about two weeks since we started the reduction in pd meds and the difference it has made is very striking. We are now able to do without carer's as he is now able to stand and transfer on his own, he has even walked a few times.

He now hates takeing his meds because they knock him for six and cant wait to stop takeing them.

Appitite is returning but still prefers something sweet but we are now able to compromise (small dish of dinner large dish of pudding)

He told the physio on thursday that he is going to sit out the garden next week to watch the airshow. And physio said I recon you will.

Hope you are all as well as can be. Jane xx

[jillannf6]

hi jane

that is great news and long may it last for Brian!

i hav the slow sort of PSP anyway so have (hopefully ) a couple more years b4 my speech goes / my falls stop as i will not be mobile and i shall not be able to do anything for myself1\

but i am GOOD about it as i have been lucky so far and have not had any more hospital admissions 1

lol Jill

and the local rugby league team won last night as well !

[easterncedar in reply to jillannf6]

Congrats on your rugby victory, Jillann! I used to follow my college club, eons ago. It was the only sport I ever was very interested in watching - but then the guys who played it were all gorgeous, and the parties after were lots of fun!

Love to you, Eastercedar

[jzygirl in reply to jillannf6]

Yes fingers crossed for you both. As we said yesterday this improvement may only be short lived but just getting my Brian back for how ever long is a blessing. So nice to get a smile when I walk into the same room rather then checking on a comatose person. I am still horrified at what the medication did to him. Jane xx

[flicka in reply to jillannf6]

Jill you are so positive about everything at the same time being a realist. I salute you.

With every good wish Flicka

[jillannf6 in reply to flicka]

thanks flick

i try to be realistic but it is not easy when i fall over so many times a day

but i am GOOD about it today again

lol Jill

[NannaB]

That's brilliant. I'm so pleased for you both. I hope the sun continues to shine. Here in Kent there is a definite feel of Autumn morning and evening but it's still comfortably warm during the day. Enjoy.

Nanna B

[jillannf6]

hi nanna b

how r u and colin today?

i hope the sun continues to shine for you both today - it looks like a nice day here too1

lol Jill

[NannaB in reply to jillannf6]

Hi Jill, We are doing as well as can be expected as they say. We had a good weekend and went to a BBQ arranged by an old colleague of mine. There were 8 of us and Colin knows them all. He had hugs and kisses from lots of people so he was pleased. I gave him his food before we went as it has to be liquidised. We got there at 1pm, the same time as everyone else so presumed it was a lunchtime BBQ. We ate at 4.30. I was starving. It was worth waiting for though. It was a sunny day, good company and lots of laughter. A bit of a disaster when we got home at 8 pm though. Colin wears a convene which I emptied discreetly on the pretence of taking Colin round the large garden. We had been home about 30 minutes when Colin started laughing. When I asked him what he was laughing at, he couldn't explain but tapped his leg. I had forgotten to close the tap on the convene bag so when he "went" he ended up with a soggy sock, slippers, trouser leg and the rug under his feet. That is something I don't think I'll do again.

We have been plagued by hornets so someone is coming to destroy the nest in our eaves in a minute. The man next door broke his foot swatting one of, "your hornets" he called them. Hornets revenge I think.

Have a good day. Sunny here at the moment.

Nanna B x

[nomansland]

great news..!

[Sashagirl]

Would you please tell me what meds he was on & what you stopped that made such a dramatic change. My husband, being a doctor, does not wish to take drugs. Last summer we had to start the sinemet, then early 2014, started lexapro & seroquel because of depression and delusions, accusing me of being unfaithful. he wants to decrease dosages. His PSP has given him dementia at 76 yrs old. Within last few days i've decreased lexapro be 10mg and seroquel be 25mg. I'm wondering the depression & delusions will return. Hope not! Today was wonderful with church & family over. He is tired & retired to bed early. As u people have said.....just take one day at time & remember the good times!

[jzygirl]

Mornig Sashagirl

The parkinsons specialist had got him on a very large dose of sinimet. (9 tablets per day of the 25/100). Then 2 riponarol at night. He got to the stage where he was comatose all day. Neuro said 1) he was over medicated 2) the medication was not doing him any good and to stop takeing it. It is a case of weening him of it wich is a different ball game

[jzygirl]

Mornig Sashagirl

The parkinsons specialist had got him on a very large dose of sinimet. (9 tablets per day of the 25/100). Then 2 riponarol at night. He got to the stage where he was comatose all day. Neuro said 1) he was over medicated 2) the medication was not doing him any good and to stop takeing it. It is a case of weening him of it wich is a different ball game

[wifemo]

Well done, both of you - hope the airshow goes well. If it's the one at Clacton, some will be flying over near me on Thursday on their way to you.

Mo

[jillannf6 in reply to wifemo]

HWIFEMOI

HOW R U REALLY

I KNOW YOU LOST YORU HUSBAND RECENTLY TO PSP -SO HOW IS ITI GOING FOR YOU ??

LOLJILL

[wifemo in reply to jillannf6]

Hi Jill -

I'm getting there, thanks. Just back from the bereavement group at the local hospice - last one at the old premises before they move to a brand new-built one not far away - so we all took nibbles and there was a (non-alcoholic) punch as well as the usual tea/coffee.

About a dozen there today. We always come away feeling cheered, and of course we all understand what everyone else has been going through.

There are various other spin-off activities such as a walking group, carpet bowls, and one chap is going to start learning golf, etc.

It's 18 months now, and I've joined the local WI and U3A, and I'm picking up the family history research as well, and trying not to get too involved again in the local Heritage Society. Being in a town helps as it means I can get out every day and usually see someone I know.

I have a very good friend who has been a Samaritan in the past, and is a widow herself (don't like that word, but trying to get used to it!) who is supportive and understanding.

All in all, while I still have reasonable health I'm making the most of the freedom of no direct responsibilities. The novelty will wear off eventually, but life's pretty good just now.

One of the reasons to stay on this site is for the inspiration of those like you, battling on.

Take care,

Mo

[jzygirl]

Wifemo yes it is the clacton air show.