A life in the day of.........................

[Helen33]

Dear Sylvia

This is good practice indeed How long are you going to observe this for Sylvia cos I was wondering whether dealing with it straight away might be easier than when stiffness sets in?
I noticed that you and Dhiren did some gentle exercise yesterday
and wondered whether Dhiren enjoyed it?

Love to you

 

[gigi]

Hello Sylvia..

Terry is certainly on the ball...

The stiffness you are witnessing with Dhiren..and he is commenting on...as the drug is recent it's natural to think maybe that's the cause.

But ...on the other hand...Dhiren hasn't been as mobile lately...

And Eric..probably due to his immobility..does complain of stiffness in legs and back...

Sometimes when I'm helping him to dress his legs and feet go rigid..and he is not on anything but Reminyl.

So it could be a natural progression of the disease.

Just putting the other side of things...I'm sure Terry is aware of this as well.

love gigi xx

 

[Margarita]

How Dhiren feeling today ?

 

[sad nell]

Sylvia . So glad things are better, but on a selfish note, i so miss your daily reports, i feel like you are part of my life now and worry when i do not know how things are. i know it is good and a positive result but i really miss your daily posts, it must be so good to have the pressure off and not feel the need to post, but i have become addicted( very selfish i know) just wanted to know how life is at the mo for you and dirhen. cannot belive how much i think about people i have never met, but log in and look for your name and are dissapointed when i do not see your name, should be happy that you do not need to post but still miss daily dairys, hope no news is good news love pam

 

[Grannie G]

Thanks everyone.

Dear Helen
The stiffness has been coming for a while. Dhiren gets into bed diagonally and it then takes him a while to shuffle himself into a straighter position to make room for me.
He also has had problems getting in and out of the car for a good while.
I will be monitoring for a week or so just to see if it gets worse. The first sign of anything will have me on the phone to terry or the consultant.

Dear gigi,
I think it has been a natural progression of the illnes to now.
The only thing that`s different is this time Dhiren commented that he`s feeling stiff, and I`m also aware of the new medication.
However it does not seem to be noted as one of the side effects on the leaflet.

Dear Maggie,
Dhiren continues to be calm during the daytime but remains restless around sundowning time. However the restlessness is so mild in comparison to the way it was, it hardly disturbs me at all, although I do watch carefully just in case.

Dear Pam,
What a lovely post. Thank you.
I sometimes worry I post too much and feel I should take a back seat occasionally.

 

[TinaT]

Never think that Sylvia. Your posts have helped so many people, including me, to come to some sort of terms with this illness. xxTinaT

 

[lesmisralbles]

Dear Silvia

Your posts have helped so many people, including me

AND ME

Barb X

 

[BeckyJan]

feel I should take a back seat occasionally.

PLEASE do not do that Sylvia. I agree with the others.
Also I think your 'diary' of events is so useful to newcomers to see some of the highs and lows of dementia.

Love Jan

 

[Grannie G]

He will not give up hope.

Today`s headlines in the Daily Express......

MIRACLE OF APPLE JUICE: DRINK CAN HELP FIGHT ALZHEIMER’S

http://www.express.co.uk/home

So I`ve got my instructions.

 

[Skye]

I was advised by the CPN when John was first diagnosed in 2000 to give him apple juice. We've both drunk it ever since.

She said it had to be the cloudy kind, with bits in, rather than the clear one.

 

[Grannie G]

Thanks Hazel.

My big problem is all the ones I`ve looked at have a high sugar content, as as Dhiren is diabetic I don`t really know what to do.

I don`t want to deny him something he sees a beneficial.

PS I found one supplier but they are in Kuala Lumpur.

 

[Helen33]

Hello Sylvia

I've been juicing my own apples since the year dot and Alan hasn't benefitted Well he will have benefitted in some ways because fresh fruit juice has to be good but it didn't prevent him from getting a dementia

Love

 

[CYN]

regards getting in the car and getting into bed, Ron had these problems but i do not think he was stiff. he could not tell me anyway but i think it was a progression of his condition. He had suffered mini strokes.

regards Cynthia x x

 

[Grannie G]

Dear Helen

Another hope down the drain for those to whom it gave hope.

I told Dhiren I would search the internet to see if I could get sugar free apple juice. He said I should get some for him too and he`ll diet with me.

He had forgotten all about it.

Funnily enough we had a juicer for years and I juiced apples, carrots and celery every day. It made a delicious drink. And it didn`t stop Dhiren getting dementia either.

I gave it away when I got fed up of throwing away all the good fibre.

 

[Grannie G]

Hello Cynthia

Dhiren is definitely very stiff.

We went out for dinner on Thursday with Paul and Julie. Paul has a large 7 seater. Dhiren somehow managed to end up sitting on a bent leg and it took us ages to `untangle `him. I think he was in a bit of pain afterwards.

Even when we went to the AS Christmas Lunch, well before he started taking Amisulpride, he had big problems getting into the taxis. It was easier for him to get out, but getting in was a big struggle.

He seemed unable to organize his body.

The taxi driver said `Park your bum and swing your legs in.` I could have strangled him, but had to keep quiet so I didn`t upset Dhiren.

 

[TinaT]

I know what you mean about not upsetting the taxi driver by responding to his stupid remarks....

Three years ago at 11a.m.in the morning I was walking along Blackpool promenade with Ken and my mother - a horse drawn carriage was parked alongside as we walked by. My mother heard the driver saying to someone else about the way Ken was walking " Drunk at this time of the morning - they make you laugh"

I did not repond.... but it hurt me like mad!!

xxTinaT

 

[Grannie G]

Dear Tina

I would have willingly upset the taxi driver, it was Dhiren I felt I had to protect.

Actually if it happens again, or anything like it, I will phone the taxi firm and put them straight. If we don`t educate them they`ll never learn.

 

[Skye]

Another hope down the drain for those to whom it gave hope.

.

I think it's another case of eating/drinking healthily in the hope that it will stave off all diseases!

To be fair, John was already diagnosed before we started, and he did have a very slow progression.

On the other habd, I think that had more to do with the form of dementia.

My view is that it can't do any harm, unless of course the sugar is a problem.

Sorry, no idea about the stiffness. But could there also be a loss of co-ordination, as Dhiren has difficulty getting into cars?

 

[fredsnail]

I just want to say thank you to all who have contributed to this thread.

I've only had a chance to read to page 59 (lots more to go yet) and I'm moved to tears and smiling at the same time.

How those of you care 24/7 cope amazes me and I admire you all.

It is a truely dreadful illness, and also one that is completely baffling and frightening for carers and sufferers alike.

I'm so grateful I found this site a few months ago - you have made me feel I'm not alone and I have learnt so much just by reading - so thank you for sharing your stories - the love you have for the people you care for shines through - even on the bad days.

GG - I hope that you have more good days with the medication.

fs

 

[lesmisralbles]

Hi Silvia

May sound DAFT, a northen expression.
Stiffness.
Sounds like Ron.
Any other symptoms ?
Barb XX