1. taylorcat

    taylorcat Registered User

    Jun 18, 2006
    171
    W.Scotland
    Firstly I apologise if I am out of order saying what I have to say.

    The item on GMTV this morning about Aricept being withdrawn, did anyone see this ?

    Of course it is completely wrong to withdraw this drug but what I am concerned about is the lady they showed suffering from Alzheimers. You may remember this woman from a documentary some time ago. This lady, to me, does not represent a true picture of Alzheimers and what it does. She was diagnosed 6 years ago and seems not too bad to me. Wouldn't it be better if a truer picture was represented when speaking of this awful disease.

    As I say, I do apologise if I offend anyone with this but felt I had to say it.
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Not having seen the piece I'm just speculating, but perhaps that was the point - to show the positive effects of aricept, which now won't be available to early stage patients.

    Jennifer
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi taylorcat

    I didn't see the GMTV feature, so I may have misunderstood your comment, but I have to disagree.

    My husband John was diagnosed six years ago, and compared with many of the posts on TP is 'not too bad'. But I put this down to his having been prescribed galantamine from the word go.

    John and I also do publicity, and I would hate to think we were offending or upsetting people. Surely the point is that, with immediate treatment, the progess of the disease can be slowed, and quality of life preserved for as long as possible. The more evidence we can produce that early treatment works, the better for people who still have to go through this dreadful process.

    Skye
     
  4. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    i can agree with both points made here , aricept made a difference to my husband within 2 week , not vast ,but for 5 years there was a slow decline in the AD ,more physical than mental, when other aspects of AD began ,like hallucinationsl and aggression, the consultant in her wisdom decided it was the aricept and took him off it , the decline was rapid , and i put him back on it , as i had some in stock , he did not pick up all he had lost ,but got him back on his feet , 12 month later she again insisted he came off it , due to some further decline , once again a rapid decline ,within 2 week i had to bring a bed downstairs and obtain a commode and such , while i arranged all this they took him into assessment, cant tell you how fast he went down .that was the beginning of the end ,i wish there was a program tracking a patient deprived of this drug , that would give a truer pictureof the need for the drugs.
     
  5. taylorcat

    taylorcat Registered User

    Jun 18, 2006
    171
    W.Scotland
    Sorry, I probably shouldn't have said what I did.

    Skye, you and your husband are probably doing a great job.

    Maybe I'm just angered that my Mum has deteriorated so much in such a short space of time. But then I suppose everybody's different. Sorry.
     
  6. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi taylorcat,

    my mum has been given 12 months (last february) so i know how it feels to see the deterioration of someone so close, my mum never got the chance to use aricept so i dont really know about the effects of it.

    i just wanted to say TP is a public forum and we all have our own opinions on what is good and bad, i really dont think you should say sorry for something you feel that strong about, im sure nobody took offence in your comments, were all on the same journey, just taking different routes.
    take care x
     
  7. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    I'm with Donna - you don't need to apologise. I would agree that we normally only see the most sanitized version of dementia displayed on the screen (usless we're counting psychotic axe-murderers). I suppose there is an issue of exploitation if it's a real person without the capacity to consent, but I do think they could make dramatic portrayals a little more realistic. As a sidebar (and I don't know if this US programme has come to the UK), I was watching an episode of "without a trace" last night, and the protagonist's father had AD. The issue was whether he had a right to refuse treatment for kidney failure. They did show him "slipping" in time, and thinking he was a child, but the upshot was that he agreed to treatment, and then died before he could get it. Bit of a cop out, I thought, and none of the unpleasant side of AD (incontinence comes to mind).

    Jennifer
     
  8. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    paying

    Hi All,
    Scottish Parliment was on the tv. They were discussing this now they said it is too expesive and that they are going to make you pay for it. I don't know if this is for new starters on it or for everyone on it. What if one of them was on it would that make a difference? Can you pay for this on benifts?
     
  9. frederickgt

    frederickgt Registered User

    Jun 4, 2005
    124
    Hornchurch,Essex
    Gmtv and Aricept

    I dont know if I am fortunate or not reading these posts,Anna my wife is on Aricept,to hear that dome NICE>? people were
    threastening to take the druh away from her made my blood boil.I could wish that the chaiman of that particular quango ,or his wife,had AD.That was how I felt.thogh I would
    wish this awful disease upon nobody,Anna suffers from hallucinations,she is always seeing small chilfren around home,she has lost track of time,goes to bed a 6pm and gets up again a few hours later,she also on occasion gets violent,had attacked me with her handbag( that will teach me to buy her a new one)and also with my own walking stick.
    I am myself a 79 year old disabled gent and I am her carer.If there is one advantage it is that any upets or disagreements are forgotten almost immediately,at least she is not incontinent,how could she be,she visits the toilet every five minutes,I am hard put to it to keep a sufficient supply of toilet paper,
    B ut I love her,that is all that matters,and in her best moments she gives me a little kiss and says thank you for taking care of me!
    How can I get my hands around that chairpersons neck/
    and why hasnt tony blair left the country yet?
    I quote."I do not want to live ib a country where old people have to sell their homes to pay for care" GRRR!
    God bless all carers!
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    taylorcat, of course you've no need to apologise. We're all entitled to express our opinion.

    I'm sorry your mum is deteriorating so quickly. I know John and I have been lucky. I would just like others to have the oportunity to see if they will respond as John has.

    Chip, I don't think there is any problem for people already on the drugs. My GP told me yesterday that there was no problem about John continuing with them. I didn't hear the discussion, but I assume they were suggesting that people not already on them could try them if they were prepared to pay for them. Iniquitous, because that's socially divisive.


    Jennifer, I thought the same about Mike Baldwin in Coronation Street. It was quite sensitively handled, but to kill him off with a stroke meant they didn't have to show the 'messy' bits.

    Skye
     

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