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New, Scared and Confused...

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  • michflo34
    michflo34 Member Posts: 34
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    https://alzconnected.org/discussion/68243/new-scared-and-confused

    N'ayez pas peur de l'avenir ! c'est trés dur je jour où vous apprenez que vous êtes malade ALZHEIMER ! mais par la suite il faut savoir et pouvoir en parler aux autres! mais il vous répondent: tu oublie, mais moi aussi ça arrive à tout le monde ! alors vivez, sortez et voyagez si vous le pouvez § c'est ce que je fais, je pars en vacances en pension complete 2 fois par an ! mais cette année se ra 4 fois, car la maladie avance ! mais je cours plus vite qu'elle ! Courage et pas "désespoir" AMICALEMENT Michel

  • David1946
    David1946 Member Posts: 654
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    https://alzconnected.org/discussion/comment/199409#Comment_199409

    Hi Tim I told you that I would let you know if I had Parkinson well I do not have it.

  • GWH3
    GWH3 Member Posts: 1
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    I’m currently having neuropsychological testing and I know something is wrong but I don’t have any diagnosis yet. My memory used to be like a sponge but now it’s getting bad. I will check back when I know more. I’m glad to see this forum. Bill H
  • Iris L.
    Iris L. Member Posts: 4,306
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    Welcome, Bill. Please keep us updated on how you are doing.

    Iris

  • nitebird
    nitebird Member Posts: 8
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    edited May 13

    Tim - I am new here as well. Father has Alzheimer's and after his older brother's rapid decline with it, he has been terrified of getting it himself. Thank you for sharing! I am trying to understand his thought processes and it helps to hear how others are feeling and coping, because he is good at being "dad" and deflecting - he is always ok and there for us.

    Hello Daivd - you seem to have been on this journey awhile. Thank you for sharing all your insights! Might I ask: do you have any experience with the genetics like APOe and Gene Sight testing for specific medication metabolism issues?

  • David1946
    David1946 Member Posts: 654
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    https://alzconnected.org/discussion/comment/208930#Comment_208930
    https://alzconnected.org/discussion/comment/209008#Comment_209008

    Welcome to the forumno

    No the only test I have had was a brain scan to see if I have Parkinsons and that was negative. I wish I could recall the med l am on (I'm not home to check on it)that has helped me to make my nightmares to slow down, let me tell you it really works.i missed . . It Ione night and boy what a nightmare I had that night let's just that I was attacked by 2 guys, if you have been following my story you what during That nightmare. Then I have had one that I woke up singing Christmas Carols.There are more.

  • nitebird
    nitebird Member Posts: 8
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    Thank you, David. I would be interested in that medication name, if you are willing to share.

  • nitebird
    nitebird Member Posts: 8
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    Tim, if you haven't been on any medications yet, you may want to check out the phase III gamma therapy HOPE trials Cognito Therapeutics. https://www.cognitotx.com/clinical-studies#hope-study

    MIT is behind this. https://news.mit.edu/2023/40-hz-vibrations-reduce-alzheimers-pathology-symptoms-mouse-models-0605

  • David1946
    David1946 Member Posts: 654
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    https://alzconnected.org/discussion/comment/209026#Comment_209026

    I would like to but I do not want it to seem like I am giving medical advice. Check with your doctor about what you are experiencing and an if he gives a medicine that begins with the letter "D" get back to me and i will talk to you about it and what i am experiencing. Is that o.k.

  • David1946
    David1946 Member Posts: 654
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    edited May 14

    Hi every one I had another nightmare last night my wife and I went to some kind of a flea market she went shopping while I was in the mood for salt water taffy after I found it I went looking for my wife I could not find her so I went to call her on my phone and it slipped it out of my hand and fell into to big hole but I could not reach I started to panic. I finally got into to the hole and I thought I had found it but no there were at least 3 other phones there but mine was not one of them at that point my wife woke me up while I was crying help me I can not find my phone.

  • Iris L.
    Iris L. Member Posts: 4,306
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    David, try taking deep breaths when you start to panic. This can help you to focus.

    Iris

  • David1946
    David1946 Member Posts: 654
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    My wife wakes me up when I am panicking and says David take some deep breaths and they do help. I find myself taking some breaths during the day when it feels like the walls are closing in on me and it helps.

  • Iris L.
    Iris L. Member Posts: 4,306
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    I did not have panic attacks but I felt discouraged for a while. Deep breathing helped me get out of the discouragement.

    Iris

  • nitebird
    nitebird Member Posts: 8
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    https://alzconnected.org/discussion/comment/209032#Comment_209032

    I understand completely. Thankyou!

  • nitebird
    nitebird Member Posts: 8
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    edited May 16

    So sorry to hear that David! Not sure if this applies with dementia and Parkinsons. However, there is a lot insomnia, anxiety and nightmare issues that runs in our family. Most of us have found sleep position helpful. Here is an article about it. https://www.psychologytoday.com/us/blog/sleep-newzzz/201903/your-sleep-position-affects-much-more-you-think#:~:text=Right%2Dside%20sleepers%20may%20experience,harder%20time%20recalling%20their%20dreams.

  • Iris L.
    Iris L. Member Posts: 4,306
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    Thanks for posting the article about sleep positions, nitebird. It's food for thought. I sleep in different positions and I have not noticed a difference in dreams. But I will pay more attention.

    Iris

  • David1946
    David1946 Member Posts: 654
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    https://alzconnected.org/discussion/comment/209142#Comment_209142
    https://alzconnected.org/discussion/comment/209322#Comment_209322

    I will try different styles

  • David1946
    David1946 Member Posts: 654
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    https://alzconnected.org/discussion/comment/209008#Comment_209008

    Hi nitebird, I have been seeing a Neurologist for some time. He has put me a few meds to help slow down the disease which are helping. He put me on my CPAP machine and he had me tested for low iron so now I am waiting to see a specialist to see if I need an infusion. I will let you know how it goes.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more

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