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New to Alzheimer's

Michaeleen
Michaeleen Member Posts: 1 Member
in I Am Living With Younger Onset Alzheimer's
I'm 58 years old and have been diagnosed with early onset Alzheimer's. I would like to talk with those who have early onset also.

Comments

  • Iris L.
    Iris L. Member Posts: 4,587
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    Member

    Welcome Michaeleen. I do not have Alzheimer's Disease but I was diagnosed as having cognitive impairment nos with memory loss in 2008 at age 58. I continue with treatment for memory loss. I have learned quite a lot about living with memory loss and I may be able to answer some questions for you. Please post back.

    Iris

  • agillohio
    agillohio Member Posts: 3
    First Comment
    Member

    Hi I'm Ann I was diagnosed in late November as having early onset Alzheimer's. I just turned 59.

    I have no idea what to expect.

  • Iris L.
    Iris L. Member Posts: 4,587
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    Welcome Ann. Every person with Alzheimer's Disease is different and has a different journey. There are steps you can take to soften your journey. Please continue to post if you have questions.

    Iris

  • JulietteBee
    JulietteBee Member Posts: 2
    First Comment
    Member

    🙏🙏🙏

  • maryannbarnsley
    maryannbarnsley Member Posts: 6
    First Comment
    Member

    I am 59 years old and I received the AD diagnosis 2 months ago. I am struggling emotionally with it so much. Not to be funny, but my brain is all over the place. It just continues to race. I'm having lots of trouble with sleeping.

    I meet with a genetics doctor next week to see if I even quality for Leqembi, although I'm not ready to make that decision. More conversations with my new doctors.

    I am scheduled for an amyloid PET scan on 1/29.

    I wish there was some sort of interactive group for people living with dementia. I have so many questions

  • Jordana B
    Jordana B Member Posts: 21
    10 Comments
    Member
    https://alzconnected.org/discussion/comment/233965#Comment_233965

    Did you get the PET scan results yet?

  • Bestillmylove
    Bestillmylove Member Posts: 9
    5 Care Reactions First Comment
    Member

    Did you receive your results from the amyloid PET Scan?

  • texeattle
    texeattle Member Posts: 4
    First Comment
    Member

    I'm 59 and just got diagnosis. Really want to talk to us "younger ones" to see if what I'm thinking, feeling, experiencing is normal.

  • Calibird
    Calibird Member Posts: 13
    Second Anniversary 5 Care Reactions First Comment
    Member

    Hello, I am 52 and diagnosed with early onset and I'm trying to just keep going but sometimes I get so down and depressed from the diagnosis it makes it hard. I'd like to talk to others who are in the same boat as me. My dr. wants me on leqembic but I have to go to a different clinic to get it and I have to qualify first but I'm hoping I can get on it. Even though I am worried about the possibility of brain bleeds which I'm told could be a side effect. Just trying to make it through I guess.

  • eaglemom
    eaglemom Member Posts: 715
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    Member

    First let me welcome everyone. Next let me say that whatever you are feeling is fine. Upon receiving any kind of diagnosis it really takes quite awhile to totally wrap your head around it. It's your diagnosis and you can only handle it that best way you know how.

    What I would encourage each one of you to do is to research and read. Try to become somewhat familiar with what you are going through. Sometimes people don't like to do that - but knowledge is powerful. It can help you understand what your going through. Possibly help you to not be so afraid.

    Ask questions and share here, this is what we are here for.

    eagle

  • harperlori56
    harperlori56 Member Posts: 1
    First Comment
    Member
    I am 56 and diagnosed with MCI due to Alzheimers, All of my CSF biomarkers were positive and I have the e3/e4 gene. I am also trying to get on Leqembi but having trouble getting insurance to cover and just made a little too much to qualify for their assistance. If is very stressfull. I think the worst part is not knowing how long it will take to progress to the next stage. It is a roller coaster of emotions for sure. One think I just started doing is I am writing in a journal about this experience and what symptoms I had as well as making lists of things I want to get done. I want to have some record to pass along to my kids and family. What are all of you doing to cope?
  • Janutt
    Janutt Member Posts: 133
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    Member

    Hello Everyone,

    This diagnosis has many emotions that only we know what that feels like. As so me have said digest it.

    I was diagnosed 4 years ago at the age of 55. I was misdiagnosed with functional neurological disorder. I knew this and my family knew this diagnosis wasn’t true. my husband did believe this since he didn’t want this real diagnosis to be.

    I may sound morbid or “why would you want to be diagnosed with Alzheimer’s.” I am grateful to be diagnosed with this disease. It did take a year and a half for me to get the true diagnosis.

    I did go through all the testing, lumbar punctures to finally get another opinion. Although I do get some doctor's still diagnosis as the latter (FND).

    I am the youngest in my family gene to have been diagnosed with this”monster” of a disease. I find it easier to fight it head on. Don’t give up! There are many people here to listen to you all.

    What I do now is keep active. I am learning new things and when i can’t remember I laugh and repeat again.

    I definitely have my bad days. I sing a silly song. “If I only had a heart.. do do do. If I only had a brain do do do.” This is something from Wizard of Oz. I have to find my silly humor if not you go down a rabbit hole.

    I’m enjoying life. It’s definitely not an eay life I live. Lots of new and steady health issues where I can’t take the new drugs/medications.

    Digest. Nothing has to be rushed.

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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