I`m Clinging To Straws here but............

Discussion in 'ARCHIVE FORUM: Support discussions' started by Grannie G, Mar 4, 2007.

  1. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,594
    Kent
    When my husband`s diagnosis was given in September 2005, his MMSE score was 23.
    The following score was 20, and then 19, which was in November 2006.

    In November 2006, after reading that blood tests in people with Alzheimers showed a deficiency of B vitamins, B6, B9 [folic acid] and B12, he started to take them, with Vit E, which was reccommended to aid the metabolism of the Bs.

    Although we have had many ups and downs, coping with his condition and related behaviours, he has said he felt sharper, and I have noticed some improvements, including sleeping well all night, waking refreshed every morning, and not sleeping during daytime.

    Last Thursday he went for another consultation and assessment. He scored 20, on the MMSE test.

    The consultant was pleased with the score, but regarded it as the same as last time. To us, it was 1 point higher, instead of ? points lower.

    Now we must wait to see if this very slight improvement is giving us false hope, or if there really is some benefit in supplements.

    I will keep you posted.
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Sylvia, thats so good, a positive step. Thanks for sharing with us.

    It is so important that we do feel we are doing all in our power to keep them on the right road. If he says he feels sharper, then whatever the score it's good.

    Love to you both,
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    #3 Skye, Mar 4, 2007
    Last edited: Mar 4, 2007
    Sylvia, that's such good news. You're both feeling positive about the effect of the supplements.

    It's so important not to give way to hopelessness, and any form of pro-activity can only be good.

    Let's hope the improvement continues.

    John & I have both taken Multibionta 50 since he was diagnosed, but I've recently had to stop giving them to John because he has started chewing them instead of swallowing. I'm not sure if this is dangerous. Anyone know?

    Love,
     
  4. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Sylvia .... clinging to straws is good and well done for trying..... trouble is with that tactic we've all got greasy hands ....:(

    I wonder why so much faith is put in the MMSE 'scores' ... I know mum's last one she hit 23, with a lot of help and prompting by the CPN (which is almost another question in itself about the value of this type of assessment ....) ..... a day/an hour earlier or later, it would not surprise me that she would achieve 25, or only a 20 ..... say .... such can be her fluctuations ...

    I take the 'score' as something given at one particular 'snapshot' point in time ... not an overall measurement of her mental well-being and abilities. In your case, and all those caring 24/7 for a partner, your assessment of improvement or otherwise has to be the 'expert' one based on continual assessment ....

    ANYTHING (legal!) which promotes well-being physically or mentally has to be good.... I know we have to be careful on TP re recommendations etc .... but I'd love to explore this further .... I know mum regularly has some 'B' injection ... has done for many years ... quite why I don't honestly know - but better start finding out ..... :eek:

    Love, Karen, x
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I 2nd that :)

    Gosh sounds good new, if it work go for it keep giving it to him, I must admit I’m not 100percent happy with the MMSE test as my mother English is never been good, but was given the test twice in English ones in 2004 scoring 12 then 2006 scoring 10 , now I wonder if she was given the test in Spanish would she had scored more , because she would of understood the question better in Spanish .

    When she was first diagnosed in Gibraltar I did not no anything about this test or what the real imprecation of the meaning of the test was , yes I was ignorant so did not ask the scoring because I did not know that they where scoring her . So I can only go from the 2 test she had done in England in English , my mother scoring is low and she still knows me her family and her surrounding and still go to daycentre and plays bingo and is on medication for last stages of AZ also she go to the toilet on her own .
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Maggie

    Your mum's score is very low considering how much independence she still has. I bet the language problem makes a difference. I wouldn't like to take it in a foreign language.

    They haven't given it to John for three years, because of his language problems, the consultant is happy to go by what I say, and how John presents. That seems to make much more sense.

    I think it's all to do with the present preoccupation with record-keeping.

    Love,
     
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Is that because he can not express what he is saying or thinking?
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Can't express himself, can't understand what is said, can't read or write, watches TV but doesn't understand. The language centre of his brain has virtually gone. That's why TP is such a lifeline for me.

    But he's physically very fit, can do things when he decides, but not when asked, and his memory is sometimes better than mine. He can still paint.

    It's a strange disease. I haven't read any posts that are similar to our experiences.


    Love,
     
  9. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Scores

    Sylvia, There are lots of thinks I have not come accross in the years I've been caring for my wife. What are MMSE scores? as for the different stages I haven't a clue other than the final stage which I last read about six years ago in Alz mag. My daughter pointed out them Mom was in the final stage, I never bothered reading up any more. On joining TP I discover all different kinds of medication being prescribed. When my wife was first diagnosed GP gave her Prozac.
    Once she had to go into hospital (broken arm) then a NH they seemed to think it best to feed her drugs. Once I took her home and returned all the medication she had the shakes for a while, but with a little imagination, food and drink she's fine. I'm looking forward to phoning the NH on the 1st April to inform them we're doing fine thank you. The last time I phoned was two years ago to let them know we were well, the answer was "yes Ive seen you pushing her around in the w/chair. Have I lost out? I don't think so, just went with the flow of the changes (stages) in my wife and not looked for some miracle cure.

    What I have learned from caring for Jean is I would not wish anyone to give up their life by caring for me. I pray to God I'm spared this awful affiction which is so little understood. The only pain I feel is my wife's, in turn I'm humbled by it. For now I'm happy in my roll and wish you all the same happiness. God bless. Padraig
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,594
    Kent
    Dear Padraig,

    The MMSE is a memory test and the top score is 30. I`ve no idea how accurate or reliable it is, it`s what is used, and even though I feel my husband`s condition has deteriorated, I cling to straws if his score goes up by 1 little point.

    He has always believed in herbal remedies and so called natural remedies, so the vitamins I give him make him feel something is helping him. Whether they are or not remains to be seen.

    Dementia is such a depressing condition that I believe anything that helps the sufferer feel she or he is being helped can only be good. The tiniest increase in self esteem and self confidence, even if it is short lived, justifies, in my opinion, trying.

    My husband only takes conventional medicine, on prescription, for diabetes. He does take an anti-depressant as well, which seems to help him.

    You are someone I have admired from the first day I joined TP. You are strong and have the courage of your convictions. I hope, somewhere deep inside, your wife knows how wonderful your care is. You are an example to us all.

    With love
     
  11. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Sylvia, Am I to take it from what you say my wife's score would be 0? How could anyone have assessed her in the past four years without movement or speech? Now when I ask her a question, for a yes, or no I kiss her, when the she returns the kiss it's a Yes. She can't move her head from side to side, nor up and down.
    If there's one thing I've learned about Alzheimer's is that it's consistency is so very inconsistent. Each day I expect the unexpected and am never surprised. After more than a week I'm still trying to capture a urine sample by putting a container in the commode. Three times I have asked her to be a good girl and have a wee, and three times she supplied me with the wrong sample! at least her system is working. Thanks for your help, best wishes. Padraig
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,594
    Kent
    Dear Padraig,
    To add to your talents, you`re a comedian to boot. Thanks for making me smile.
    With love
     
  13. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
     
  14. Splat88

    Splat88 Registered User

    Jul 13, 2005
    176
    Essex
    I don't see how you can set any store by the MMSE if either the CPN prompts, or you don't understand the lingo!!!

    Mary certainly can't do the first part of the test, she hasn't a clue what the date etc is, can't remember the 3 items and she always looks at me to answer for her. The second part of the test, following instrucitns etc she can manage well, and even manages to write a sarcastic sentence usually questioning the stupidity of what she's being asked to do!!!!

    I was told at the last appointment that her score was 23 in 2004, and has deteriorated to 18 at the end of last year. As she's on Aricept, it'd be nice to know if not taking it would have made any difference.

    Is the score any real indication of how advanced things are? Apart from the lack of memory, and the recent reluctance to take her meds, ( some have been changed to liquids now, but apparently I'm trying to poison her, so its no better!!) she doesn't appear as bad many of your relatives.
     
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,594
    Kent
    Hi Splatt

    I too have my reservations about the test, but English is my husband`s 2nd. language and he was given absolutely no help, even though he looked to me, when unsure.

    Like Mary, he can`t do the first part of the test, day, date and location, as well as the 3 objects. [I could only remember 2, what does that say about me?]

    Also, to be taken into consideration, from my perspective, are `good` days and `bad` days but these don`t seem to matter.

    I suppose it boils down to averages, but just like average income and average house prices, we all know the insignificance of the word.
     
  16. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    Sorry to say this, but I personally think the tests cannot be construed as guidelines for those caring for the patient. Jean has had several of the tests over the last 5 years and has never scored above 14.

    This made me feel abysmal when she was first diagnosed because I thought that i had been living with someone with alzheimers for a number of years and never noticed.

    Then it was explained to me that, in some patients, some areas of the brain deteriorate more rapidly than others and over a fairly short period of time, whilst other areas seem to function perfectly normally.

    Taking Skye's case as a point, Jean seems to be in a very similar situation to Lionel, where her language has virtually gone but, until last year, she still wanted to paint and tried to read a book.

    I do not believe that the tests take the patients abilities into consideration. They only seem to test their disabilities.
     
  17. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Grommit, don't be sorry - I think that's a hugely valid point .... I'm more concerned that mum's memory allows her to lock her door at night or knows to fill the kettle before switching it on etc .... if she's forgotten what day it is, sad as that is, she is not actually jeopardising her safety ......:(

    Love, Karen, x
     
  18. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    I agree with that. We on TP know (none better) that the AD blanket cover a whole variety of symptoms. I have never yet read a post about anyone with the exact same symptoms or progression as John, and I'm sure most of you would say the same.

    So what exactly is a 'one size fits all' test testing?
     
  19. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Connie, just what are we being accused of here?
     
  20. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Skye

    I think you are probably being accused of nothing at all. My interpretation of what Grommit said is that he might have added a word and made things clearer:
    instead of
    probably it would be better as
    Any test always needs to be considered in combination with other factors. And as we know each case is different from any other.

    As everyone has agreed, dementia hits different areas with different people, and leaves different areas functioning more or less normally, for different people.


    yet another Brucie story:

    when I was 18 and still at school, I went to two major computer companies to sit aptitude tests, hoping to enter the bright new world of computing, as it was then.

    both companies looked at the results and said "forget computers. You will never have a career here with computers".

    From 1965 until 2004 I had a very successful career in computers, and wrote a number of books on the area.

    Why, when they were so sure I was so hopeless?

    The test they used was a type of intelligence test - I'm useless at those. Had they used a logic test I'd have sailed through.

    It was the wrong test to determine my capabilities, just as the MMSE can be the wrong test - if used in isolation - to test the abilities of a person with dementia.
     

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