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Newly diagnosed

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I’m 54 and was diagnosed formally 3 weeks ago. Having a tough time dealing with it, but I’ getting help, have lots of support and understand that all these emotions are pretty normal. I had my first Leqembi infusion last week and am hoping that helps. I am just not sure what to expect in the near term and could use some advice from people who have actually been where I am.
Thanks

Comments

  • Rango
    Rango Member Posts: 1
    Third Anniversary First Comment
    Member

    I was diagnosed with MCI two years ago now I'm diagnosed with early onset dementia. Mostly I'm scared for the future. Your dealing with it pretty well. I haven't shared my diagnosis with anyone. I'm sorry we are both in this situation.

  • eaglemom
    eaglemom Member Posts: 825
    Legacy Membership 250 Likes 500 Comments 100 Care Reactions
    Member

    Welcome to the message board to the both of you. I'm sorry your both here, but glad that you found us.

    The emotions your feeling are all normal. Have you reached out to your local ALZ Chapters to see if they offer any support groups.

    Personally, do not worry about the future. Much easier said than do, I know. If you have dementia / ALZ or not, your worrying only upsets you. And that's not good for you. That sounds cold, and I'm certainly not trying to be, but if you worry about the future, you forget to enjoy the here and now.

    Please do look at the other threads. There you will see more discussion than this one is getting and you'll be able to gain information.

    eagle

  • Laura2020
    Laura2020 Member Posts: 16
    10 Comments 5 Likes
    Member

    I was diagnosed last year at age 54. It hit me hard too. My mom passed away just two years prior from Dementia related issues. So, I knew what was coming. It was the most painful experience watching her disappear knowing there wasn't a thing I could do help her. But that was then and now there's hope with all the new advancements with medications. I myself started Leqembi in January. I just had my third MRI on July 4th. So far so good. I haven't had any major side effects other than a headache that comes & goes and I feel fatigued a lot of the time. But that I can deal with. Also, I stay active (gym, walking, yard etc.) take my neurologist recommended vitamins & supplements. I do think the treatment is helping. My thought process feels clearer, and my husband has told me many times that he can tell a difference. Just take it day by day and LIVE your life. You'll have bad days and that's okay. I don't know if this was helpful or not, but I just wanted you to know you're not alone 💜

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