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  1. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Below is a copy of an email I sent on Friday to a University that studies dementias. Thought some people on here might relate to my frustration and take heart from the fact that I am at least trying to get answers....

    Dear Sir/Madam,

    I have contacted your University before when investigating the idea of donating my father's brain to science when he has passed away (that sounds terrible in writing) and I greatly appreciated the information that was provided to me on that occasion.

    Today however I have another question that I am hoping you can help me with. I don't know why it bothers me but I am continually frustrated with the perceptions society has of Alzheimers and by all of the information sheets on Alzheimers and by my own expectations of what Alzheimers disease is, because none of it even seems to come close to describing what has happened to my father. This evening I found a link to your university website, specifically Dr [Name deleted]'s details when investigating the idea that my father does not in fact have Alzheimers at all but instead has been wrongly diagnosed as he is in fact suffering from frontotemporal lobar degeneration.

    I know that it probably really doesn't matter, as there is no treatment that can help him and it is too late for such things now anyway (Dad is in his 10th year this year since diagnosis). But if someone could just explain to me why he isn't like other Alzheimers patients, or tell me that actually he is like other Alzheimers patients but its just that society doesn't properly inform people like me of the real symptoms...it would help immensely as I would I feel be more accepting of my father's condition and not constantly worry that more could be done for him, that his doctors have misdiagnosed him...Also it might actually be easier to tell people that he has FTLD as they won't have the perceptions of his condition then that are so way off the mark.

    So what I want to know is (and no I can't get decent answers from the doctors here in [my home town]...some have even said that as I (and my family) have more time to devote to researching Dad's rarer early onset condition, we will often know more than them on the topic....), based on Dad's symptoms which are/were:

    * Dad was diagnosed at about age 54, although he and my mother began seeing doctors when he was 52 as they recognised something was wrong;
    * Dad's first major recognition of something being wrong was when he went to give an annual speech to his employees and got up in front of them and then just went blank and could not recover his thoughts so that he had to just walk away with no explanation;
    * In retrospect, my father who had always been rather rigid in his ways, became more and more what probably could be called obsessive compulsive about daily rituals in the 10yrs prior to his diagnosis;
    * Dad also told us that he first personally became aware of something being wrong when he just wasn't able to understand the stuff he read for his work as easily as he used to;
    * Dad never really seemed to have memory problems like we expected he would based on typically quoted Alzheimer's symptoms, he didn't get sentimental about old memories and forget new things...he did used to do little things that I put down to memory problems tho, like leaving taps on...but he never left them on full, it was as though he performed the process of turning the tap off, but didn't finish the process of turning it off completely. He also appeared to 'forget' how to eat sandwiches (pulling them apart instead of holding them together), 'forget' how to use a knife and fork, like using a knife the wrong way around, upside down.
    * Dad can no longer talk at all (occasionally words come out, but most often just sounds) He appears to be trying to talk and sometimes there is even expression that suggests he is asking questions, or stating something, but generally except on the odd exciting occasion, no real words are said. He does say 'what' still quite often, perhaps a reflex, reacting to his confusion, more so than a conscious choice of word.
    * My husband who met Dad after his diagnosis states that he has no memory of my father ever having a conversation in his presence, that over the last 6yrs, he only ever heard dad say one or two words.
    * Dad has not really said anything that I could be sure he said intentionally since the end of 2003 (i.e. from this point on, I could no longer verify one off phrases that he came out with, as they were only that from this point on, and asking him to say it again or if he meant it would not be responded to);
    * Dad went through a long period of apathy about his disease that really upset my mother, he didn't care;
    * Dad then went through a really bad period of depression where he would just burst into tears and lie on the floor in tears (something he never ever would have done before the disease no matter how distraught);
    * Dad also had a very brief (thankfully) period where he wanted to walk around naked...this did not last long however;
    * Dad lost control of his bladder I think in about 2002/3 (diagnosis was in 1997);
    * Dad definetly had neither bladder or bowel control from end of 2003;
    * Dad did seem to have some visual or spatial problems as far back as 2003 as he used to step over cracks and shadows...for some strange reason, he went through about 2yrs of not appearing to be able to see what was on tv, but in the last year he appears to have very strangely regained this ability and has held onto it for over a 6months now and doesn't step over cracks anymore. He appears to understand when I tell him we are going to walk up or down a hill and alters his gait accordingly.
    * Dad can't do anything himself except walk once someone stands him up, and sit down and stand up with some assistance...otherwise bathing, eating, dressing, being put to bed etc is all done by caregivers. He lost the ability to feed himself last and even now occasionally with a lot of perserverance he can get a biscuit to his mouth if I place it in his hand...but again this might be reflex, but it does appear to me that he concentrates on trying to get it to his mouth some days. He has required full care since again around late 2003;
    * Dad has had one massive seizure (where he ended up unconscious) otherwise he has regular myoclonic jerking usually small but sometimes severe enough to make him fall over;

    Can someone tell me if this is the normal way of an Alzheimer's sufferer's progression and if so why is there no information out there to tell us to expect this stuff? If it is not normal for Alzheimer's sufferers...does it fit in with something else such as FTLD? Lastly, is my whole question pointless, as the diagnosis can't be made for sure without autopsy...or can doctors make a differential diagnosis, i.e. can they say for example as he has the defining symptoms of FTLD but not all of the AD ones and thus will be diagnosed with FTLD instead until at least his death proves otherwise.

    If a differentiating diagnosis can be made, how can I get someone with the appropriate qualifications to be able to consider his scans and symptoms to make such a diagnosis...or is it too late to do this now. Since Dad went full time into a care home almost 2yrs ago, he no longer seems to be considered worthy of a specialist's attention, I guess they figure a general doctor is able to deal well enough with his dying. Is there anyone who would be interested in studying Dad's condition and therefore could investigate his unique symptoms in light of what is considered expected for his diagnosis?

    People keep telling me that his diagnosis is not important as it is too late to do anything about. But if FTLD is different to AD then I would think it would be important to ensure that it gets recognised when it exists to encourage more funding and more research go towards it, and not just to AD. And if this is just AD then I need an authority to tell me this is normal Alzheimers symptoms so that I can increase awareness of the truth of this disease.

    Appreciate any assistance or advice you can provide,

    Regards,

    Natalie [Surname deleted]
     
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #2 Margarita, Jan 7, 2007
    Last edited: Jan 7, 2007
    Just wondering how come that they where investigating your father and your father name was on a wed site you found ?

    Sorry or have I read it wrong and its you that thinks your father has frontotemporal lobar degeneration.
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    I think, Margarita, the the OP meant not that her father was being investigated, but that the OP's investigation into her father's condition led her to that particular website. Like if you were investigating AD you might end up here. :)

    Jennifer
     
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #4 Margarita, Jan 7, 2007
    Last edited: Jan 7, 2007
    Oic I thought maybe it was her own Idea ,


    I only say this because I to also think my mother has another form of dementia then Alzheimer's the move I read up about it.

    PS who is the OP Jenniferpa?
     
  5. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Clarification

    Thanks jennifer for explaining yes that was what happened.

    I had read about FTLD on the Australian alzheimers org website and it sounded exactly like dad....although I had never heard of FrontoTemporal Lobar Degeneration before. I had heard of Fronto temporal dementia before but depending on what you read on it, sometimes it is just described as Pick's disease, sometimes it is described as being diagnosed by the sufferer doing socially unacceptable things which Dad never initially did, but this new description FTLD did sound very much like Dad indeed.

    Thus I began investigating. Then I found this university website where the doctor in question was studying the differences between dementias in particular studying alzheimers and FTLD. And I recalled that I had gotten a very useful and helpful response before from the same University so thought it was worth asking them for help again.

    They're very keen to get there hands on people like Dad's brains as well for research purposes (again that sounds terrible but it is something that can only do good in the end I believe) so they have motivations to be helpful.
     
  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    Sorry - I've been dealing with the NHS and its acronyms too much: OP - Original Poster

    Jennifer
     
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Thank jenniferpa


    I do find the subject very interesting that
    jc141265
    I do hope you get reply and would be very interesting if you could let us know what they reply to you
     
  8. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi jc141265

    just wanted to say that i found this post really interesting, my mum has never had a proper diagnosis and even though it wont make any difference to the out come i would really like to know what were dealing with.

    my mum had a heart attack in 2004 resulting in brain damage due to lack of oxygen so her dementia is not something that that weve had years to live with.
    she was fine for the first year but suffered short term memory loss, becouse of the brain damage which we were told she would have anyway, christmas 2005 saw a very progressive change in her behaviour and in feb 2006 she was diagnosed with a dementia similar to CJD the consultant told us she had at the most 12 months to live.
    sept/oct 2006 we had another meeting with the consultant who then informed us that mums dementia had levelled off and he no longer thought that she would die so soon.
    during a meeting on thursday i questioned the consultant about what type of dementia my mum has he said he dosent know! he said that would it really make a difference to the outcome and really the only way to tell is to have a autopsy on death!
    I feel i need a answer, i owe it to my mum to try and give her the best treatment there is, and we are as a family thinking of getting a second opinion.
    my feeling is that they treat all patients the same whatever type of dementia they have.
    i think my mum deserves a proper diagnosis but i just dont know how to get one, good luck with your findings i look forward to seeing your outcome
    take care
     
  9. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    155
    stretford
    HI JC
    What an interesting post, ive always wonderd if my mum had what the specialists say she had ALZHEIMERS. Ive always thought is there something similar, My mum was 54 when she was diagonozed 3 years later her body just shut down, never uttered a word never could feed herself double incontinent it was as if she had been in a horrific car accident and from that day she was gone. Yes i say that because thats how it felt. I only wish they did a postmorton on my mum maybe something else would of been discovered. I though the only way to tell if someone had alzheimers is by a post mortom. I ve not come across many people on here how can relate to what my mum went through. She remained that way until she passed away at the age of 62 . Thought what you said was realy interesting and it does make one think.

    kathy x
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Nat

    I'm very interested in your post, and would love to know the outcome.

    My husband John was diagnosed with Alzheimer's seven years ago, but showed litle deterioration apart from his very poor language skills. Last year his consultant said he was 'much better than he ought to be', and suggested that he was suffering from primary progressive aphasia -- but would only be able to tell on autopsy.

    This year, John has deteriorated considerably, as a result of a virus, but he is still physically very well, and his memory is relatively good. In fact, he often reminds me of things I have forgotten. But he cannot read or write, and his speech is almost incomprehensible. He shows no sign of aggression or violence, and is continent during the day, but needs a pad at night.

    It's clearly not exactly the same as your father, but it's interesting to compare the variations of this disease.
     
  11. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    HI NAT,AND SKY.I NEVER HEARD OF ANYONE QUITE LIKE MY HUSBAND EITHER, THOUGH DIFFERENT FROM BOTH YOUR STORYS ,HE NEVER HAD PROBLEMS WITH MEMORY ,AS FAR AS PEOPLE OR INCIDENTS WENT, HIS SKILLS STARTED TO DETERIORATE FIRST ,DRIVING. USING TOOLS AT WORK . STRUGGLING WITH UTENCILS,HE WAS FIRST DIAGNOSED AS HAVING HAD A STROKE SHOWING DAMAGE TO THE BACK OF HIS BRAIN, RESULTING IN SPATIAL AWARENESS.THESE PROBLEMS GRADUALY BECAME WORSE.LATER SCANS IT WAS SAID ,NO STROKE . BUT AD.THIS CONTINUED FOR 5/6 YRS TILL HE COULD HARDLY WALK WITHOUT 2 PEOPLE TO SUPPORT HIM , STILL KNEW EVERONE HE MET , STILL SEEM TO REMEMBER HOLIDAYS RECENT AND PAST ,THEN THE CHANGES STARTED TO HAPPEN FIRST ,PANIC ATTACKS .MONTHS AFTER IT WAS,HULLUCINATIONS,BELIEVING THE TELEVISION WAS REAL, THEN AGGRESSION, HE NEVER LOST HIS SPEECH , THIS WHOLE PERIOD OF CHANGE LASTED 18 MONTHS TILL HE DIED, QUITE SUDDENLY ,AFTER BEING ON AN ASSESMENT WARD FOR A FEW WEEKS WHERE HE SEEMED TO BE HAVING TIAs. NOW I KNOW ALL THE END CHANGES ARE IN KEEPING WITH AD/ DEMENTIA,BUT NEVER CAME ACROSS ANYONE WITH THE MEMORY HE STILL HAD .ONLY ANSWER I COULD GET OF THE MEDICS, WAS EVERYONE IS DIFFERENT. WELL I DONT BELIEVE THEY ARE TO THAT EXTENT . ,I ALLSO WAS TEMPTED TO ASK FOR A POST MORTEM . BUT IT WAS TOO UPSETTING FOR THE FAMILY , GOOD FOR YOU NAT FOR CONTINUING THE RESEARCH.
     
  12. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    I wanted a post mortem, also wanted to give my mother's brain for research, but no-one else in the family wanted that, so it wasn't worth having a family argument about it.

    Lila
     
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