Results in from my neuropsychologist evaluation.....

Discussion in 'The Watercooler' started by timer lady, Oct 1, 2010.

  1. timer lady

    timer lady Queen of Hearts

    Not sure how to take it....I've been more than a little stunned. The diagnosis from my new psychiatrist is early onset dementia from meningitis/encephalitis. Luckily the course of dementia has stopped because the disease was treated.

    I'm not sure I want the diagnosis in my chart ~ cannot explain why. It was suggested that I get a service dog - I believe that may be too costly right now.

    I'll be meeting with neuropsychologist doctor in a couple of weeks to go further into my results & possible rehab options.

    Fifteen minutes at a time, ladies....fifteen minutes at a time. My new motto! :D
  2. KTMom91

    KTMom91 Well-Known Member

    I don't know what to say, Linda. Many hugs.
  3. crazymama30

    crazymama30 Active Member

    Uggg. That would bother me a lot too, I would not want in my medical record either. Hugs.
  4. flutterby

    flutterby Fly away!

    15 minutes at a time is doable. I don't blame you for not wanting that in your file. The hits just keep coming, don't they?
  5. Fran

    Fran Former desparate mom

    Linda, I'm sorry to hear that your illness continues to cause damage to your life. I'm not sure why that diagnosis on your chart is more bothersome than some others. It's not a reflection on your character but a description of the symptoms you display.
    It may prevent you from getting a job that requires complex work or dangerous work so don't apply to work a construction crane. I understand that you don't want professionals to read that label and to think you are incompetent or to treat you in a way that your abilities don't warrant.
    As one professionals said of my difficult child "the danger comes in underestimating his abilities and over estimating his abilities". I think that is a big fear when we hear that we, ourselves, are impaired in some way.
    I would ask what that label implies and how does that affects your ability for self care and responsibility for the twins.
    Hugs. Remember it's not who you are but just a label. Most professionals would not make the leap that you are incompetent but maybe some unknowledgable people would
  6. TerryJ2

    TerryJ2 Well-Known Member

    Wow. I am so sorry. But it sounds like the progression has stopped, and you can use medications for some of it, right?
    I agree with-Fran, discuss the label with-your dr. Ask if it will help with-your care, and especially what it might mean to the ins. company.
    Many hugs.
  7. klmno

    klmno Active Member

    Hugs- I am sure that was a hard blow to take. I also agree with Fran but can definitely understand why you wouldn't want everyone in the real world to know. In your medication charts, it could be a benefit since they are keeping the progression slowed or stopped thru treatment- and that's the silver lining in it.
  8. DDD

    DDD Well-Known Member

    I'm not sure that a patient can decide what goes in their medical reports but I can understand your discomfort with the diagnosis.
    Foremost I know that you have always put Herculean effort into responsibilities and have much to be proud of from many years of experience. Try not to worry too much prior to your meeting. I'm hoping the explanation of impact will be more
    bearable than anticipated. Hugs. DDD
  9. timer lady

    timer lady Queen of Hearts

    Thank you all. Really. I knew automatically, you of all people, would read this & not automatically assume that I'm "off my nut". I haven't lost the majority of my information ~ just cannot reach it. I struggle with new memories & some complex tasks. Other tasks I seem to breeze through.

    I'm signing up for a comprehensive driver assessment & training class. My brother (who specializes in brain trauma/injury & the like), seems to think some of my cognitive losses can be regained or learned in a different manner. Others may be lost for good.

    Fran, I know the label isn't who I am - it's just the name; it's harsh & unforgiving. DDD, I've always appreciated your quiet & ongoing support; I hope you know that. The sames goes to each & everyone of you.

    Life is a journey ~ I guess this is a detour. I'll get bitter later or perhaps I'll just forget.
  10. Hound dog

    Hound dog Nana's are Beautiful

    Wow! That totally blew me out of the chair.

    Mostly likely because that is exactly what easy child is worried.........insert here very worried.........might be going on with me. Of course mine wouldm't have the same cause. Mine would be the Traumatic Brain Injury (TBI). And I have to say it worries me as well because she doesn't know half of what I deal with daily concerning memory ect. :tongue:

    Now what is supposed to cheer you up about that is............I'm also the one who just graduated nursing school. LOL

    My point? Stay as active as possible. Read a lot. Stimulate your brain to keep it working as much as possible. The good news about this is that there is a cause to it and that cause has been treated. You could spend forever in the "beginning" stages of dementia without ever progressing any further. Know what that means? You're forgetful. You might get confused at times and under certain circumstances. (usually high stress) Honestly, at this point after what you've been through, I don't think it's that big of deal.

    You're a highly intelligent woman. You've kept a schedule for years that would've left me dazed and confused even before the Traumatic Brain Injury (TBI). I've been in awe of you for years.

    Want me to be honest with you? I really would like to be neuropsychologist tested due to the Traumatic Brain Injury (TBI). I know there are issues, some more severe than others. And I do plan to try to get it done at some point. Yet another part of me is scared to death they're going to tell me my brain is really mush and my short term memory is toast and it's functioning is going to go straight down the tubes just because they said so. lol So that part of me would much rather keep on coping as best I can and pretend there is no problem. ;)

    Just remember Linda.......a label doesn't change anything. But I would sit and talk with your doctor to see if there may be possible services it could get you just to make everyday stuff easier. And a service dog??? OMG! I want a service dog!!!!

  11. gcvmom

    gcvmom Here we go again!

    Linda, I hope this new "label" doesn't discourage you from continuing to move forward. There are some medications out there that can probably help with some of the memory issues. difficult child 2 is taking Namenda this past year, which was developed for Alzheimers, but it seems to really help with his memory and processing. You might want to investigate what else is out there that you can try as an adjunct to your rehab/pt program.

  12. graceupongrace

    graceupongrace New Member


    Since I joined the board, I've followed your posts and considered you an intelligent, thoughtful and capable person. This diagnosis doesn't change that. I know it's startling to see those words from the neuropsychologist, but I hope that the evaluation leads to whatever additional support you need. Hugs.
  13. ctmom05

    ctmom05 Member


    As always, I'm sending supportive and empathetic thougts your way, sister
  14. SRL

    SRL Active Member

  15. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Linda this has been a fear of mine for years! Especially since both my mom and grandma died with alzheimers. Getting the meningitis made me even more scared because I felt like I knew what it felt like to have it. I have often said I would never live to go through was awful to watch. One thing I have been told is that many of the medications I take for bipolar seem to stave off alzheimers so I guess that is a good thing. I can understand not wanting to hear it though, that would probably send me right over the edge.
  16. Nomad

    Nomad Guest

    I too am sorry to hear of all the repercussions due to your illness.
    Are you sure of this opinion? Can you get a second opinion?
    Can you take a medication like Aricept and the like?
    There is a natural product called "PS" (this is an abbreviation for a much longer word). I swear it is very helpful for me re: memory, etc. It is used in Europe for ADD and demenia all the time. Said to have no side effects.
    I day at a time....15 minutes at a time if necessary on some days (hugs)