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I would like to speak with someone else who has Alzheimer's

professorsnow
professorsnow Member Posts: 5
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in I Am Living With Alzheimer's or Other Dementia

People without Alzheimer's keep responding to my entries. I would love to join a forum where I can actually interact with people who have Alzheimer's, not mci and not caregivers.

Thanks

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  • dlubritz
    dlubritz Member Posts: 15
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    GREAT.

    I have been diagnosed with dementia related Alzheimer’s Disease!!

  • David1946
    David1946 Member Posts: 765
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    I was diagnosed last fall with ALZ. I'm still struggling with it but my wife says take one day at a timebut it's not that easy

  • Iris L.
    Iris L. Member Posts: 4,412
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    Are you talking about me, professorsnow? If so, I will refrain from responding to your posts.

    Iris

  • p.a.l.
    p.a.l. Member Posts: 1
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    https://alzconnected.org/discussion/69537/i-would-like-to-speak-with-someone-else-who-has-alzheimers

    I was recently diagnosed with AD. Ironically, I received the official diagnosis on my last day of work before retirement. I guess my retirement will not be as long as I had hoped. I am still trying to process it all.

  • David1946
    David1946 Member Posts: 765
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    I was diagnosed last fall I no longer drive and am on several meds which seem to be working

  • Iris L.
    Iris L. Member Posts: 4,412
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    Welcome p.a.l. I'm sorry you received this diagnosis. Although there is no cure for the dementias, there are steps you can take to make your journey less arduous. Please keep posting and updating us. Peer support is very important.

    Iris

  • lakress1955
    lakress1955 Member Posts: 2
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    I have just been diagnosed with ALZ, early onset. I only have short term memory issues as this point. I am in shock as we all are I assume. My neurologist put me on memantine and would like me to start IV Leqembi. It does have some severe side effects, but she says it would be worth it, as it slow the progress of the disease a lot. What are your thoughts on Leqembi treatment, anyone?

  • Iris L.
    Iris L. Member Posts: 4,412
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    Welcome lakress. There are not many members on Leqembi, since it is a new treatment. Please keep us updated on your experience with it. Are you going to include Best Practices?

    Iris

  • farha shaikh
    farha shaikh Member Posts: 2
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    https://alzconnected.org/discussion/69537/i-would-like-to-speak-with-someone-else-who-has-alzheimers

    My mother has Alzheimer's since 3 yrs now...

  • lstanley
    lstanley Member Posts: 1
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    > @professorsnow said:
    > People without Alzheimer's keep responding to my entries. I would love to join a forum where I can actually interact with people who have Alzheimer's, not mci and not caregivers.
    >
    > Thanks

    Hi
  • Iris L.
    Iris L. Member Posts: 4,412
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    Welcome, lstanley. Please tell us more about yourself.

    Iris

  • michflo34
    michflo34 Member Posts: 34
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    https://alzconnected.org/discussion/69537/i-would-like-to-speak-with-someone-else-who-has-alzheimers
    https://alzconnected.org/discussion/comment/213629#Comment_213629

    Bonjour !je suis Français vivant à Montpellier très grandes écoles de médecine et de recherches ! j'ai personnellement refusé de suivre ce traitement pour ralentir la maladie, car il y à un risque de problemes dans le cerveau et tout petit risque de "mourir" ! je n'ai jamais pu avoir aucun résultat de ces tests préparatoires; des analyses de sans des scanner cérébral, parait que c'est "confidentiel" ! l'avantage est que tout es déplacements et frais éventuels de restaurant si loin de chez moi, étaient pris en charge! mais j'ai pas pris le risque TROP de DOUTES étaient en suspens !

  • Iris L.
    Iris L. Member Posts: 4,412
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    Professorsnow posted almost three weeks ago that he wanted to communicate with other PWD. I wish that you other members would communicate with each other. It really can be a great help to you all, to have peer support!

    Iris

  • michflo34
    michflo34 Member Posts: 34
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    Bonjour ! cela est super de communiquer entre nous ! je suis michflo34 (Français) ! je viens prsue tous les jours selon mes possibilité !diagnostiqué il y 5 ans Alzheimer, je vais chez l'orthophoniste 2 fois par semaine, et l'association Alzheimer pendant 2 heures le mercredi matin, pour ce qu'on appelle un atelier mémoire !

    Mardi dernier l'orthophoniste m'a dit : Michel encore 4 à 5 ans ensemble.

    j'ai bien compris qu'elle voyait que les exercices qu'elle me propose, sont plus difficile pour moi. Je fais beaucoup de faute d'orthographe (alors que j'étais très bon élève avant) Mais le choc émotionnel est passé, et je viens un peu ici pour parler avec les malades "Américains" ! Courage ne perdons pas espoir, si malgré cela il est difficile pour mon "aidant" de tout comprendre comment faire pour ne pas être désagréable avec moi ! COURAGE mes amis !

  • CARRIEMDAY
    CARRIEMDAY Member Posts: 4
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    Prof Snow I am willing to talk with you about my Alzheimer's. I was diagnosed in August of 2023. It is by far the most difficult passage of time I have ever gone through. At times I feel separated not only from my loved ones but from God as well because I fear for my soul. I too am a retired professor of disability studies and tried to read a brief book by CS Lewis last week and was robbed of the joy of comprehension. I don't know which way to turn in the labyrinth…I only know I don't want to be there alone. So we could talk and maybe understand each other better because of what we are going through. Take good care

  • CARRIEMDAY
    CARRIEMDAY Member Posts: 4
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  • ricardo
    ricardo Member Posts: 189
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    https://alzconnected.org/discussion/69537/i-would-like-to-speak-with-someone-else-who-has-alzheimers

    I would gladly chat

  • Iris L.
    Iris L. Member Posts: 4,412
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    Welcome, Ricardo. Can you tell us a bit about yourself?

    Iris

  • David1946
    David1946 Member Posts: 765
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    Welcome Ricardo, You are not alone inyou journey.

  • ricardo
    ricardo Member Posts: 189
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    I’m 73 white male. Married living with family. I was diagnosed last week after a brain MRI showed some shrinking. I take memantine since last week. I have no overt symptoms or memory problems right now

  • ricardo
    ricardo Member Posts: 189
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    Also take Prevagen

  • ricardo
    ricardo Member Posts: 189
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    Anyone here?

  • ricardo
    ricardo Member Posts: 189
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    ?

  • Iris L.
    Iris L. Member Posts: 4,412
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    Hello Ricardo. You sound like you are doing well. Have you had blood tests to rule out dementia mimics?

    Iris

  • ricardo
    ricardo Member Posts: 189
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    I’ve had blood work which did not point toward Alzheimer’s but and MRI showed some shrinkage to get my Dx

  • Iris L.
    Iris L. Member Posts: 4,412
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    What made you seek investigation when you have no overt symptoms or memory loss, Ricardo? How are you doing with the memantine?

    Iris

  • ricardo
    ricardo Member Posts: 189
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    The Memantine seems to be working. I still have few symptoms

  • Iris L.
    Iris L. Member Posts: 4,412
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    Good for you, Ricardo! I hope this persists.

    Iris

  • ricardo
    ricardo Member Posts: 189
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    So do I

  • ricardo
    ricardo Member Posts: 189
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    edited August 13

    How are you Iris? My name is Richard

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
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