Early onset support

Sco-B · July 4

Hello,

I'm Scott and riding on this journey with you. I received official diagnosis this past February 2026 then jumped on the merry-go-round of initiating treatment. After many pitfalls and several months trying to gain access, I ultimately joined a clinical trial for a new drug. Yes, the trial comes with its own pitfalls, but after months of no progress through the traditional health care system, it prompted me to look other options. I created a list of the Alz "Centers of Excellence" hospitals in the Downstate NY region I live in then reached out to 5. Two responded they had no openings. The others didn't bother to respond after sending a 2nd and 3rd calls/emails.

Overall the clinical drug trial is going well. They are super organized, communicative, smart, and you can just tell they want to do the right thing. My infusions are scheduled once every 4 weeks and take a few hours each time. The downside: 50% chance of placebo. The upside: if I'm in the placebo group and the drug proves efficacious, participants are offered to switch over to the active drug at no cost.

I had my 2nd infusion this past Wednesday and don't "feel" anything. It could be a good or a thing?! I dunno.

Throughout this process I've looked to join a live support group, ideally in person, or virtual as a backup; but it seems these groups are in super high demand since they seem to be always filled up. Also since I work 2 days/week, daytime hours don't always work for me. After reaching out to alz.com directly for help identify available support groups, they confirmed the groups were full. To assist further, they sent me to an outside alz org that holds support groups (withoutwarning.com) but after sending 2 emails to them, I haven't heard anything back yet.

Ideally it would be great to find a group that's LGBT friendly but I'll take any suggestions!

Scott NYC/Long Island

Jcarr · July 4

I have been in a virtual group that is awesome for a couple of years. Look into Dementiaminds.org There may be a waiting list but talk to them and look at some of their videos on their website.

Sco-B · July 6

thanks for the insight! will check it out.

Scott

Lizaru · July 23

Hi Scott, I wanted to tell you about my experience with Easai, the company that makes Leqembi, one of the two FDA approved infusion drugs Kinsula is the other. there is also Wegovy, but I know nothing about that one.

When I was diagnosed, I was still working and was on my employer's health insurance. They would not cover the infusions. I appealed, etc. but no was the answer. So Easai gave me the infusions for no cost. I think the nurse who does my infusions did the paperwork for that. She's really good with saying the right thing. I had it for 4 months, I think, for free. Then I went on disability and Medicare covers it. Don't know the hoops you had to go through, but this could be something…!

eaglemom · July 23

Welcome to the message board. I love that you are actively trying to find a group and to get active in it. Sadly you have to do just as your doing, a lot of research on your own to find support groups.

You might try Dementia Friendly and the city you live in. Personally my DH & I participate daily in a Zoom provided by them. I can't say enough good things.

Keep looking, reading and being active.

eagle

Sco-B · July 24

Thanks for your insight. Fielding these options as well as a couple of others. Hope to get into something soon.

duanest · August 12

I was diagnosed with Alzheimer’s this past January. They started me on Leqembi in February and have been on it since then. I was given cognitive testing again last month and my score dropped two points, but still in the mild range. The most difficult part for me is that I live alone in SW Ohio. So i am doing this mostly on my own. I do have an aunt that lives nearby and helps when she can. I and trying to learn more and to stay active.

Lisa Wright · September 15

This is helpful feedback! Thanks Scott - hope your journey is progressing well.

I am Lisa, live in the Denver area of Colorado.

I was diagnosed in March 2026 with early stage AZ disease - I looked into clinical trials but was concerned about getting the placebo; at my age wanted to do everything I can to slow it down. So took the option (covered by insurance, thankfully) for Kisunla - had infusion #5 (monthly) today. I'm not sure how to guage the progress, MRI's so far show no Aria. Also I am not working, still have some memory issues on a daily basis.

I would like to join a group to learn more about how folks are managing their process.

My husband and I (optimistically) bought our ski passes this year hoping for good snow and some joyful days on the slopes!

I'm a big outdoor girl, hiker and just enjoy anything outside. The treatments have made longer hiking harder, as I'm slower and have less energy.

Wondering where to find folks who have gone through clinical trials or are further along, and how it is affecting their illness?

Thank you,

Lisa

Early onset support

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