well I don't believe there is no hope; or ever will.

[mickyinlondon]

Hi Lonestray.

I know a bit about you now; and I feel we are brothers under the skin.

I thought about you last night; and even talked about you with Rita; yes believe it or not; she can speak, walk, think, and laugh; not that the doctors could see or understand that; after she failed to answer their questions on their test.

I would like to ask them 30 questions; and see how many of my questions they could answer; I sent the last doctor an e-mail; and he could not open it on his National Health Computer; I guess its a chinese one...

The point here is; why are questions so important to them; and if they know all the answers; why are they doctors; and not contestants on; Who Wants To Be A Millionaire?? Those Nice people are just a smoke screen; because they dare not tell the truth; and failing a test is an excuse; in my opinion.

Lonestray; have we kin across the Irish Sea; somehow I think we have.

You are a fighter; in my opinion; and it helps to have rebel blood.

I thank you for your story; and like you; my girl will always be in my care; and in my hands.

I hope I can emulate all you have done; and I think you already know; I can..Micky.

 

[mickyinlondon]

No wonder you’re so angry, my mother score is a 12 and she on medication for last stages , I was told if mum went into care home they would take them away when she scored under 10 , so I am keeping mum at home with me as long as I can . because since late year she has had a drop , but where she is at home with me she still getting the medication on the NHS , so really you could give Rita medication for late stage AZ now , but would have to go privet.

In the video is Rita a 10 in the memory test? because she look amazing as my mother can not walk alone she needs a Zimmer frame


sounds fun lol

Please don't do it on TP because of cope right xx

PS I saw that done on photo forum, man was looking in the mirror and his reflection in the mirrow was looking in a different way . It was really good

Hi Margarita.

Yes Rita was already a 10; but that is not my opinion; and doctors are not always right; they just think they are.

I think if Rita was a Zero; she would be the same; so I ignore numbers; they can mean anything; like statistics always do.

As to copyright; what can they do; sue me; on my state pension...

One also needs to remember; if I take the picture myself; then its my copyright..

And Tony Blair's new house is but a few blocks from my place; plus of course; Parliment itself; is only a couple of stops on the tube from my place.

I did a piece once on Brian Haw; the protestor in Parliment Square; and I could do much the same thing; and who knows; I just might; remembering that Tony Blair and the Metroplitan Police tried to gag him with new laws; but Brian precceeds his banning laws around Parliment; so much for free speech and democracy.

But London is a big place; and you would be surprised at the places that get full publicity.

For this forum; I would not bring conflict with any laws; or any kind of trouble; that is why I have given Noel or any other moderator; my blessing in pulling the plug on me; and I fully understand that.

I can do all I need on my own site, if I have a mind; so be rest assured; I will not shame or offend this site; this site is far to important to everyone; to ever have problems; from anyone.........Micky.

 

[mickyinlondon]

Hi Micky and Rita

I enjoyed your video, but had to ask my partner to tell me how old did I think 'The lady' was. I have little central vision ( I am registered partially sighted ) details elude me, so I do not judge people by what they look like.
He said she looked to be around my age (55), Your Rita carries herself very well.
I hope that one day, in the very near future, you will be able to get the medication she deserves, which hopefully will keep the Rita you know, with you for as long as possible.

Stay possitive Micky.
Take care Bye for now
janetruth x

Thank you Jane.

Rita just read your reply; funny how a NICE 10 rated failure; can still read better than I..

And I think she can still out-walk me any day of the week; its just a pity she can't answer questions; like on mastermind or something..

But come the General Elections; 24 members of my family; all life long Socialists; will decline to ever vote again for them.

And; just imagine their faces when they knock on my door at Election time; and they always do; My boots will be clean and sharp....

Take care Jane; and don't get ill; Hospitals kill you...........Micky.

 

[mel]

Hi Micky
I was really moved to see the video of your lovely wife.....thaks for letting us see it
Love Wendy x

 

[mickyinlondon]

Good Evening; Wendy.

Thank you for watching; and your reply.

It was just a moments thought to let you all know Rita and I.

It has occured to me that I should not do things like this again; unless its for the case of Dementia alone.

If I did do things like this; to often; then the forum would become one of amusement only; instead of what its real aim is; to help others like us.

I can see that the forum should remain for AZ and all kinds of Dementia; nothing else.

So now I think this thread should close; and you all get back to normal; if any of us are normal, that is; according to statistics and numbers; and those that care about our welfare..

Take care girl; and lots of love to you........Micky.

 

[DickG]

Hi Mickey

Seven years ago I too believed that there was hope and in some way there is. At the outset I hoped that there were a few more years together and so it proved. Now at this late stage there is hope that we still have some time left together, I will not give up that hope. Perhaps what we hope for differs but there is always hope - don't give up hope it keeps me going.

Dick

 

[Margarita]

I don’t perceive this thread as just an amusement, but an inspiration of hope to other, hope for a cue not just yet but they still hope for one , so an inspiration of hope for more time together like Dick said like your campaigning for Micky , Well said Dick .

 

[mickyinlondon]

Hi Mickey

Seven years ago I too believed that there was hope and in some way there is. At the outset I hoped that there were a few more years together and so it proved. Now at this late stage there is hope that we still have some time left together, I will not give up that hope. Perhaps what we hope for differs but there is always hope - don't give up hope it keeps me going.

Dick

Good Morning; Dick.

That is just my main point; I do believe there is hope; as my title stated; ''I said'' I don't believe there is no hope; nor ever will; its the NHS and the Government that believes there is no hope for dementia's of any kind; there-for no help offered by them. They have the feet of Clay; not us.

The only way I would submit to no hope; is the day after I die; not before.

Best wishes to you Dick..........Micky.

 

[mickyinlondon]

I don’t perceive this thread as just an amusement, but an inspiration of hope to other, hope for a cue not just yet but they still hope for one , so an inspiration of hope for more time together like Dick said like your campaigning for Micky , Well said Dick .

Good Morning; Margarita.

I did feel the video was a good way to show that Rita and I, are real; people; and carry on living as we do; even though the State? thinks we are some kind of zombies; and in that respect, the video was valid; in my opinion.

But the more I read of others members plights and troubles; I then thought music and pictures could give the wrong impression to this serious subject of dementia's that we all suffer or experience.

I equate this with people laughing; while others are sad, not a correct thing to do, in my opinion.

You have no idea how much I have learned in a couple of days by reading others lives; and today I feel that anything I do; should be the best I can do.

A few days ago; I could easily have taken up the sword; but I now know the pen; or the computer in our case's; are the right weapons to fight back with.

I know so little of dementia; and I have nothing to offer other threads or other people; as to advice; that will only come to me; in time, and from what I learn.

I know this though; its not us that should bow our heads in shame; that belongs to the State; and the National Health Service; and all those clowns that think they know better; and are always right, especially when it comes to passing the buck.

You have a nice day; Margarita; because me and Rita will anyway; and a NICE classification of 10 out of 30; will not change a single thing.....Micky.

 

[mel]

You have a nice day; Margarita; because me and Rita will anyway; and a NICE classification of 10 out of 30; will not change a single thing.....Micky.

Good on yer Micky!!!
Mums last mmse test was recorded as "0/unrecordable"....?????
This was my mum who took pleasure in trips out, feeding the birds, smelling the flowers,.................ok....so she didn't know who the prime minister was , where she lived etc etc........but she enjoyed the things in life that mattered.....
Have a great day Micky and Rita
Love Wendy xxx

 

[Skye]

Mums last mmse test was recorded as "0/unrecordable"....?????
This was my mum who took pleasure in trips out, feeding the birds, smelling the flowers,.................ok....so she didn't know who the prime minister was , where she lived etc etc........but she enjoyed the things in life that mattered.....

Exactly the same with John and me, Wendy. Who cares about numbers?

Love,

 

[Margarita]

I know so little of dementia; and I have nothing to offer other threads or other people; as to advice; that will only come to me; in time, and from what I learn

Just wondering then has Rita only just been diagnosed ? as I wondering (as I always do) how long have you been living with Rita dementia if that the right way to word it.

As I thought I was the only one that was living with mum not knowing she had dementia till in what, they told me consultant that mum was in late stages of AZ.


I don’t like the scoring ether , as I always read that late stages is when they are bedridden and they no keeping my mother in bed , she always potting around

hope you both had a lovely day out

 

[mickyinlondon]

Good on yer Micky!!!
Mums last mmse test was recorded as "0/unrecordable"....?????
This was my mum who took pleasure in trips out, feeding the birds, smelling the flowers,.................ok....so she didn't know who the prime minister was , where she lived etc etc........but she enjoyed the things in life that mattered.....
Have a great day Micky and Rita
Love Wendy xxx

Hi Wendy.

Rita had a good day; which is remarkable considering she is beyond NHS help..

I hear Tony Blair recorded a Zero, over weapons of mass destructions; and he knows what WMA's are...

Like your Mother; Rita also knows what she likes; and whom she prefers; the Squirels, birds, and all animals; they walk up to her as though she was St Francis.

And the grandchildren love her to death; and that is what really matters.

By the way; who is the Prime Minister... Micky.

 

[mickyinlondon]

Exactly the same with John and me, Wendy. Who cares about numbers?

Love,

Who cares about Numbers? Skye, well every Politician does; every four years.

I think we should with-hold their medication; and not vote.. Then we can watch their wirhdrawal symptoms as they try to find real work; and live on what the rest of us have to live on.

But they will all appear again on TV; telling us all just what they have done for us; and if we vote for them; they will do even more; and make Great Britain the envy of the world.

Yes numbers are their game........Micky.

 

[mickyinlondon]

Just wondering then has Rita only just been diagnosed ? as I wondering (as I always do) how long have you been living with Rita dementia if that the right way to word it.

As I thought I was the only one that was living with mum not knowing she had dementia till in what, they told me consultant that mum was in late stages of AZ.


I don’t like the scoring ether , as I always read that late stages is when they are bedridden and they no keeping my mother in bed , she always potting around

hope you both had a lovely day out

Hi Margarita.

Well Rita and I are an odd couple... we only married in February; as she was not able to get her fathers permission..

We have been together for 10 years; but lived apart for family reasons, and we were to old to get married according to some people; so her son was in-charge of her welfare; till enough was enough; and we ran away to London...

Its a long story; but we are going from strength to strength; having a ball on our married couples pension....LOL.

Some nights Rita wants to stay out till the early hours; dancing the night away; but we can't find anywhere to park our wheelchairs in Central London; or they will tow them away.

All I know is this; if our kids can do it; so can we.. Micky.

 

[mickyinlondon]

Just recieved by myself; from my great friend Sylvie; my adopted sister.

I thought it was worth posting; as she knows about what NICE forces on doctors; at our expense.

Read below....Micky

NICE first proposed banning NHS prescription of the medicines to newly diagnosed Alzheimer's patients in March 2005. This was a reversal of existing policy as NICE had approved the drugs for use by the NHS in January 2001.

NICE subject to potential Judicial Review

Eisai Limited, the licence holder of ARICEPT (donepezil hydrochloride) and Pfizer Limited, its co-promotion partner, announced today that Eisai has informed the National Institute for Health and Clinical Excellence (NICE) of their intention to apply for a judicial review of the process by which NICE reached its decision proposing to ban medicines for NHS patients with newly diagnosed mild Alzheimer's disease.

NICE defines the severity of Alzheimer's disease according the scores of the Mini Mental State Exam (MMSE) which runs from 30 to zero. From 30 to 27 is normal. Mild Alzheimer's disease is defined as 26 to 21 points. Moderate is 20 to 10, and severe is under 10.

On 23 January 2006 NICE proposed that moderate AD be treated on the NHS, but not mild. Moderate is being defined as starting at 20 on the MMSE scale. A consultation period followed this announcement.

On 26 June NICE announced that despite the views of patients and doctors, it planned to stick to its ban on using the treatments for mild AD.

Eisai and Pfizer appealed this decision, along with other manufacturers, the Alzheimer's Society and the Royal College of Psychiatrists. The appeal hearing was heard on 13 and 14 July.

On 11 October NICE announced that all grounds of appeal from all parties had been dismissed.

____________________________________________________________________________

So, as you can see Micky, from the above, Rita's test results (10) put her illness as being right on the line between moderate to severe, which means that she could possibly still benefit from one of the three drugs still available on the NHS for a moderate condition (ie test levels 20 to 10) or failing that, from EBIXA, the drug available for the severe stage of her illness (test level being under 10) .....but not on the NHS, following the intervention of NICE yet again (see the paragraph below marked *) This is why Dr Kelly and most other NHS doctors would probably be unable to prescribe it under the current guide lines.

It is nothing less than an abomination....a complete betrayal and abject failure to each and every single person out there like Rita....they have earned the right for this treatment in this country from the NHS and they should be receiving it without question, reservation or doubt.

This next paragraph is from the Alzheimer’s Research Trust (dated 30th dated March 2007)

___________________________________________________________________

About anti-Alzheimer’s drugs


• There are three drugs licensed for the treatment of mild to moderate Alzheimer’s disease, known as cholinesterase inhibitors: donepezil (Aricept), galantamine (Reminyl), rivastigmine (Exelon). In November 2006, despite evidence of benefits to patients, the National Instititute for Health and Clinical Excellence (NICE) recommended the restriction of these drugs to only those in the moderate stages of the disease


• A fourth drug, Memantine (Ebixa), is the first licensed for the moderately-severe to severe stages of Alzheimer’s. Again, despite evidence of benefits to some patients, it is not recommended by NICE for prescription on the NHS except for as part of clinical research trials.

 

[Margarita]

it is not recommended by NICE for prescription on the NHS except for as part of clinical research trials.

Now that a Cop out , My mother been on Ebixa, For the last 5 years , its slowly slowing down in working , but I would say it given her 5 good year, that she would not of had if I never got it from the gibraltar NHS

that the English government (NHS ) for ya

 

[mickyinlondon]

Hi Margarita.

Quote; it is not recommended by NICE for prescription on the NHS except for as part of clinical research trials.

Yes I thought that as well.

Sounds like the Nazi's experiments; are ok with; with our wonderfully named; National Institute for Clinical Excellence; as long as they are only Guinea Pigs; and don't actually want or need medication.

By the way; does anyone know what they mean by ''Clinical Excellence?'' sounds like they could not even get a zero in any real intelligence test if you test the lot of them.

But you have to admire the spin they use; The National Institute of Clinical Excellence; Monty Python could not have found a funnier title for themselves.

But I bow to their superiority of humanity.

But what goes around comes around; and they just may live long enough to have to sit their own tests......Micky.