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Recently diagnosed

I was diagnosed by a neurologist a few months ago The only testing I s were 2 EEG‘s one in office and a 2 day one at home and the psycologist with neurology which included variety of memory/skills testing. After that she said I had mild cognitive and she thought it was probably Lewy Body. Suggested driving test and sent me home. I was scared, I felt alone and started researching everything I could find. I am 71, single and work a full time job 4 days (12 + hours a day) and I supplement my income selling online and as a vendor in a local vendor store. And draw social security to live. I was panicking! So I started looking for a new doctor that dealt with Alzheimer’s patients regularly and had for a while. It took a little while and I did. The first thing he ordered genetic testing and other bloodwork and a brain MRI ( it had been a few years since I had a brain mri). The mri is still 2 weeks away but my genetic tests showed 2 genes. I’m grateful for this Neurologist. But I have been overwhelmed and I don’t have a great support system while I figure out how I can afford to live without a job. But one of my other doctors suggested therapy and with her help I have found one that specializes in seniors and Alzheimer’s/ Dementia!
That appointment is in a month.
Is it normal to feel like you need to hurry to make your end of life decisions/affairs in order quickly? I can’t seem to stay focused on those issues.
Any and all suggestions are welcome and thank you

Comments

  • Dorse
    Dorse Member Posts: 81
    25 Care Reactions 10 Comments 5 Likes
    Member

    Sue 783,

    I'm sorry you are going through so much. I understand how you feel about such diagnosis. I was diagnosed with Alzheimer's 4 mo. ago, and to hear this was devastating for me. I know your job / financial situation just adds to the fear of all this unknown. We must try to stay in the present, and not think so much about the future as it's so unknown. That's true without the fear of alzheimer's, but alzheimer's is different from any other diagnosis I've ever had to hear. My heart and prayers go out to you. Try to fill your mind with the positive, etc. My faith in God does help.🙏

  • Watson1
    Watson1 Member Posts: 49
    Second Anniversary 10 Comments 5 Insightfuls Reactions 5 Care Reactions
    Member

    sue783 im 2& something years into the alzy road. yes it is challenging but it can be a slow road so time will let you learn and adjust. its a new you so you need to get to know yourself ,watch, take notes, read of others journey there are some great fist hand books of the journey. its a new adventure it doesn't change all the things you like to do it just requires greater self awareness. you will be fine did i mention im 71 as well

  • Dorse
    Dorse Member Posts: 81
    25 Care Reactions 10 Comments 5 Likes
    Member

    Thanks for sharing your experience with Alzheimer's, good advice.🙏

  • fjlaw2844
    fjlaw2844 Member Posts: 8
    5 Likes First Comment
    Member
    frank2844 i was recently diagnosed with alzheimers this month. i saw a neurologist and had a battery of blood tests and an mri and a pet scan. the blood tests and mri did not indicate anything but the pet scan showed amyloid neuritic plaques which indicated alzheimers disease. i also feel the need to get my affairs in order and to reach out to others in a similar situation. i just found this app today. God bless you on your journey and trust in the Lord. frank
  • Tom Huff
    Tom Huff Member Posts: 7
    First Comment
    Member

    Hi Sue783,

    Today is my first day on this site, but I’ve seen some great advice. Based on this site, I’ve created an Advanced Directive. I need together it witnessed and motorized. I’ll also call my lawyer on Monday to make a will.
    Just as a layman, I would say not to panic, get as much info as you can and reach out to others. Sometimes it’s easier to confide in strangers.

  • LBC83
    LBC83 Member Posts: 197
    100 Likes 100 Comments 25 Insightfuls Reactions First Anniversary
    Member

    My standard reply is that preparing an advanced directive and talking with a lawyer are nice things to do, but now that there are FDA-approved treatments which showed they slowed the progression of AD in clinical trials, perhaps these steps are no longer the first things people should consider when diagnosed with AD.

    Take my case as an example. Upon learning of my AD diagnosis, I researched the treatment options. This included visiting the Alzheimer's Association website (see the link below). This page has info about Leqembi and Kisunla, the two FDA-approved drugs which remove amyloid and slowed cognitive decline in their respective clinical trials. At the time I was diagnosed, Leqembi was the only option available. I started on Leqembi, I recently had my 39th infusion. I have had no reactions to the medication nor to the infusions, but some do have reactions, including brain bleeding / swelling (but in most cases where this occured, the problems went away after people stopped treatment).

    I did eventually update my will & advanced directive, but again, these were not my first steps. The two FDA-approved anti-amyloid medications work best when they are started early in the progression of the disease. So delaying starting treatment and instead focusing on updating legal / medical paperwork may not be the best strategy for starting you strategy of dealing with AD in this new era with anti-amyloid medications available as a treatment option.

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