Worried about John
- Thread starter Skye
- Start date
Reminyl..
That's very interesting, Hazel..as Eric has been on the maximum dose of Reminyl for almost a year now..
And he sleeps more than he is awake...
Any idea how we would know when they've stopped slowing the decline?
Love Gigi xx
That's very interesting, Hazel..as Eric has been on the maximum dose of Reminyl for almost a year now..
And he sleeps more than he is awake...
Any idea how we would know when they've stopped slowing the decline?
Love Gigi xx
Hi Hazel,
Glad you and John are both doing better and so pleased to hear about your St Patrick's day - it sounds wonderful.
Can I ask you about Reminyl?
Clutching at straws really but I know John's condition is quite similar to my mum's but we're being told there is nothing at all they can give us that would help.
Glad you and John are both doing better and so pleased to hear about your St Patrick's day - it sounds wonderful.
Can I ask you about Reminyl?
Clutching at straws really but I know John's condition is quite similar to my mum's but we're being told there is nothing at all they can give us that would help.
Kate, John was originally diagnosed as AD, and was put on Reminyl straight away. (Pre NICE)
Four years later, after we'd moved up here, the consultant decided it wasn't AD at all, but PPA (which I'd never heard of).
He was doing so well on Reminyl he was kept on it, and it worked well until his infection last summer. That put him straight into end-stage, and obviously the med was having little or no effect, so he's now off it.
AD meds are not supposed to work for other kinds of dementia, but they do work for some people. It would be worth a try if you can talk the consultant into prescribing it.
Love,
Four years later, after we'd moved up here, the consultant decided it wasn't AD at all, but PPA (which I'd never heard of).
He was doing so well on Reminyl he was kept on it, and it worked well until his infection last summer. That put him straight into end-stage, and obviously the med was having little or no effect, so he's now off it.
AD meds are not supposed to work for other kinds of dementia, but they do work for some people. It would be worth a try if you can talk the consultant into prescribing it.
Love,
Another lovely party today, this time for Easter.
They had an accordionist and singer again, and the carers danced with those who were mobile.
The Easter bunny visited, with eggs for everyone, and there were lovely refreshments.
John managed to stay awake all afternoon, and enjoyed the music.
I asked if we were now going to have a party every Monday; they said we could if I organised them.
They had an accordionist and singer again, and the carers danced with those who were mobile.
The Easter bunny visited, with eggs for everyone, and there were lovely refreshments.
John managed to stay awake all afternoon, and enjoyed the music.
I asked if we were now going to have a party every Monday; they said we could if I organised them.
Attachments
Hazel,
How it gladdened my heart to see your picture! I too, look forward to some happy memories when Ken moves into his care home.
xxTina
How it gladdened my heart to see your picture! I too, look forward to some happy memories when Ken moves into his care home.
xxTina
Hi Hazel
What a lovely photo
, you both look so well. I am so happy that both you and John enjoyed the Easter celebrations.
Love to you both
Burf xxx
What a lovely photo
, you both look so well. I am so happy that both you and John enjoyed the Easter celebrations. Love to you both
Burf xxx
Hello Hazel,
Lovely photo! One to treasure..
So we know what you'll be doing each Monday from now on...
Love Gigi xx
Lovely photo! One to treasure..
So we know what you'll be doing each Monday from now on...
Love Gigi xx
Thanks, everyone, I'll certainly treasure the photo, and a memory of a good afternoon.
Yes, Mameeskye, the Easter Bunny remembered me, and I also got a large chocolate bunny from CN for helping. All those calories!
I don't think I'll be organising any parties, gigi, at the moment I couldn't organise the proverbial in a brewery!
Love,
Yes, Mameeskye, the Easter Bunny remembered me, and I also got a large chocolate bunny from CN for helping. All those calories!
I don't think I'll be organising any parties, gigi, at the moment I couldn't organise the proverbial in a brewery!
Love,
Dear Hazel,
Thank you for sharing the lovely photo of John.
Do hope he enjoyed lots of chocolate.
Love and best wishes
Christine
Thank you for sharing the lovely photo of John.
Do hope he enjoyed lots of chocolate.
Love and best wishes
Christine
Great Day!
Just had to share the good news with you all!
I got in to see John today, and this evening the staff nurse told me they've just had the result of John's latest heel swab.
IT'S CLEAR!!!!!!!
I don't know whether it's down to the antibiotics, the Viscopaste, or the Manuka honey. I don't care! It worked.
It just shows, don't accept everything the medics say, it pays to fight!
Thank you all so much for the support, you got me through a very difficult time.
Love and hugs,
Just had to share the good news with you all!
I got in to see John today, and this evening the staff nurse told me they've just had the result of John's latest heel swab.
IT'S CLEAR!!!!!!!
I don't know whether it's down to the antibiotics, the Viscopaste, or the Manuka honey. I don't care! It worked.
It just shows, don't accept everything the medics say, it pays to fight!
Thank you all so much for the support, you got me through a very difficult time.
Love and hugs,
Hazel,
Fabulous news! I am so happy for you. Congratulations on your refusal to listen to them paying off so splendidly.
Love,
Fabulous news! I am so happy for you. Congratulations on your refusal to listen to them paying off so splendidly.
Love,
