• We're currently experiencing technical issues with our newsletter software, so our Dementia Talking Point monthly updates have been put on hold for now. We hope to restart the newsletter soon.

    Find out more >here<.

Nice

KenC

Registered User
Mar 24, 2006
913
Co Durham
Hi everyone
It was really good to see on Friday that there is to be an investigation into NICE by the Government Health Committee, who are getting worried about the lack of Public confidence in what NICE is trying to achieve.
I am off the London on Monday to speak to MPs at a dinner, about the medication and how it has affected me.
So it will be extremely interesting to see what sort of response I get from these people, who I am sure don't really care about those with Dementia, or their carers and families.
I hope to point out that even though it does not work for everyone (nor does Apirin) I feel that everyone deserves the chance of a seccond bite of the apple.
I have been extremely lucky that I got the medication and found it helped, but I can not see any reason at all why others should not be allowed the same chance.
Still we can only hope that if enough of us talk about it something might change.

Heres hoping

kenc
 
Last edited:

Grannie G

Volunteer Moderator
Apr 3, 2006
71,825
Kent
Dear Ken, Good luck for Monday.

I thoroughly agree with you about having the opportunity to try the drugs. They did not work for my husband, unfortunately, but I remember when they were prescribed, I felt so grateful he was given the chance.

I can now accept they were not for him, but I have no axe to grind because he was able to try them.

All the best Sylvia
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Ken

It's good to hear from you again, I was wondering if you were OK. Obviously you are very OK!

It's great that you are going to London to talk to MPs. I'm sure listening to you will have more effect than most campaigns.

John was aso prescribed medication from Day 1, and it made a huge difference. I think it's terrible that others are not being given the chance.

Glad you're enjoying your grandchildren, they sound lovely.

Love,
 

KenC

Registered User
Mar 24, 2006
913
Co Durham
Hi Nada,

Nice to hear from you again.

I will try to do that when I get back. I must admit that I am more terrified this time than I was at the day of action in London. I could never have done this before I was given the medication, so its a bit of a miracle that I am doing it now.

Best Wishes


Ken
 

KenC

Registered User
Mar 24, 2006
913
Co Durham
Hi all,
We met the Members of Parliament and members of the Alzheimer's society on Monday night, after travelling down from County Durham on an extremly slow train, I was very tired.
We had a very good night and discussed topics such as NICE and I thought it was very constructive and interesting.
If I had not have had an hours sleep in the afternoon when we arrived, I think I would have been completely out of it by 7PM.
But as it worked out all went well. The only thing that spooked me was when I stood up to speak, I could see myself in a mirror at the other side of the room and I did not like that one little bit. I felt as if I was watching myself for about quarter of an hour, and that does not help the brain one bit. Still I gather it went off quite well, so that is all that counts.
I think they have an idea what its like to have this illness, and we just have to hope that it was all worth it, for all the people out there with this horrible disease.

Best Wishes

Ken
 

Amy

Registered User
Jan 4, 2006
3,454
Ken, I am sure that iy was all worth it - if you have just made one person think about what it is like to have dementia - you have done a good job, and I am sure that you made MORE than one person think.
Thank you for what you do for all those who can't speak for themselves.
Love Helen
 

KenC

Registered User
Mar 24, 2006
913
Co Durham
HHi Nada,

Nice to hear from you again.

Believe me I don't do this for myself, but for all those who can not help themselves or speak for themselves.
Its not easy standing up in front of people as you will know, putting your life on display to all and sundery, but I am motivated by the fact that I can still do things and I want to help others while I can. I know in my own mind that things will get worse sooner or later so as the old saying goes (Reap while you can because the weather will soon change).

That makes me feel positive.

All the very best.

Ken
 

Nutty Nan

Registered User
Nov 2, 2003
790
Buckinghamshire
Ken, you are a star, and such an inspiration!
Your fight to stay on top of things, to keep going and to give others (the public as well as professionals) a better insight into this ghastly disease is truly admirable.
I am convinced that your speeches have an enormous impact - there's nothing more impressive than hearing it from the horses mouth!

On behalf of everyone: many, many thanks!!!!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,825
Kent
Dear Ken, You must have a tremendous inner strength, to be able to keep fighting and remain so positive. You are a beacon for all sufferers. Thank you. Love Sylvia x
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Gosh what courage you show , to go that quarter of an hour when you said

as if I was watching myself for about quarter of an hour, and that does
not help the brain one bit.

This world is surly a better place with someone like you in it
yes you sure are an inspiration!I love reading your posts
 

KenC

Registered User
Mar 24, 2006
913
Co Durham
Hi Margarita,
Sorry I did not answer but I had bronchittis so I have not been very good over the last few weeks.
But I only do this in the hope that others may benifit after I have finished. I have met many people who can not speak out for themselves and this gives me the inspiration to help them while I can.
I know that eventually things will change and a cure will be found but in the mean time I can and will do my bit, (while I can).

Best Wishes

Ken