ZOOM or On line chats or support

teeebone · October 24

I have been diagnosed with early stage Alzheimer's Disease five days ago. I have been looking through this forum and don't see a lot of interaction from many people or things that are discussed and answered the same day. Does anyone know of a ZOOM or some kind of live forum that we can all get together and speak in real time?

EB280 · October 25

Hello teeebone. I was diagnosed with early stage AD last week, too. Thanks for posting the question that was in my mind also. I will post back if I find anything.

Hang in there.

teeebone · October 26

https://alzconnected.org/discussion/comment/284858#Comment_284858

it's good to hear from you unfortunately no one else responded. I wonder if there's a chance you and I can keep in touch somehow.??

DTS · October 31

https://alzconnected.org/discussion/comment/284939#Comment_284939

Look for forums on Facebook. I found this group to be very active and informative:

Leqembi and Kisunla Support Group

LBC83 · November 2

I happen to be one of the administrators for the "Leqembi and Kisunla Support Group" in Facebook. Individuals have to request membership in the group, by answering one multiple-choice question regarding why they wish to join (considering taking / currently taking / took in the past Leqembi or Kisunla, or some other valid reason), and agreeing to the five group rules (be kind & courteous, no hate speech or bullying, no promotions or spam, respect everyone's privacy, evidence-based information). You would be surprised how many membership requests are denied as people don't check either box on the multiple-choice question and/or don't agree to the group rules.

For a short time I was a member of open Facebook groups regarding Leqembi & Kisunla (meaning anybody can join for any reason). I was underwhelmed with many wacko posts about false cures for AD ("Take this over-the-counter supplement and it will restore your cognition and prevent further decline!").

EB280 · November 2

https://alzconnected.org/discussion/comment/284939#Comment_284939

Sure. I am happy to chat hear or have a call later this week. We can decide a different place later. The last 2.5 weeks seems to have been the longest of my life. I am in total wait mode on my doctor as he is working in Kisunla approval.

My DH and I have told family and now starting to tell close friends… while trying to be “normal” — our normal since I knew something was very wrong starting in 2021. The reactions are supportive, which is nice. Some dismissiveness from a few in terms of “well, we all forget things as we get older.” I am informing these and chalking them up to most just don’t know what to say, and they may be nervous about their own changes they may have.

Have you started any of the treatments?

Unforgettable9463 · November 2

I was recently diagnosed with early onset Alzheimers as well and have been looking for a way to talk to others who can relate to what I am going through.

teeebone · November 3

https://alzconnected.org/discussion/comment/285405#Comment_285405

I'd love to talk on the phone, but I don't know how to get that 5000 people having my phone number so here's my email [email protected]. Please contact me so we can keep in touch. I have not told anyone but my brother hoping to start treatment in a month or two probably Kisunla, need to tell my daughter before I start the infusions in case I have any ARIA I don't want her to be blindsided

teeebone · November 3

https://alzconnected.org/discussion/comment/285409#Comment_285409

Email me [email protected]

teeebone · November 3

https://alzconnected.org/discussion/comment/285377#Comment_285377

I went on facebook to look for this group. I found one, but it looked like it was just for families and caregivers….. are there any groups just for us who actually have the disease without the family and caregivers ??

ZOOM or On line chats or support

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