Knowing doesn't change the losses

momikins

I am recently DX'd w/ early onset Alzheimer's (who I call Al, who is friends with my other guy ARThritis). I am a Former Alzheimer's specialist serving as the director of a local Alzheimer's association, Developer and creator of residential services and, in my youth, a personal care worker for those with Alzheimer's. None of those experiences ease the personal journey for me or my loved ones. What it does is give me (I hope) an intention to be a gracious receiver. So far it isn't easy. When my main people, my daughter and my husband, ask pointed questions, as diplomatically as they can, I know where they are heading, and I know they are right but if feels like part of a million tiny cuts. Then I remind myself the cuts go both ways because every loss I have is added to all their losses now and in the future. I look forward to sharing with and learning from this group

LBC83

Welcome to the group that nobody really ever wanted to join :)
After my AD diagnosis, I volunteered to serve a 1-yr stint on the Alzheimer's Association Early-Stage Advisory Group. It is an interesting experience, working with a team of others diagnosed with AD to help guide the overall efforts of the Alzheimer's Association.

After my diagnosis, I elected to start on Leqembi, one of the two anti-amyloid medications approved by the FDA (Kisunla is the other drug, it wasn't available when I was diagnosed). I recently had my 39th infusion. I soon hope to switch to the new IQLIK version for maintenance dosing which is self-administered via a subcutaneous injection. I recently had one of the newer blood tests, which showed that my brain is cleared of amyloid plaque (i.e. the Leqembi worked as advertised and removed the amyloid plaque). I have not had any side effects from my Leqembi infusions, but I should note that in the clinical trials (and reportedly in real-world conditions, some taking anti-amyloid medications do experience brain swelling / bleeding, referred to as ARIA. Most cases of ARIA have no symptoms, they are only discovered via MRI scans performed regularly to check for ARIA. Once ARIA is discovered, treatment with anti-amyloid medication is paused until the ARIA naturally clears, at which point treatment may resume.

Dorse

https://alzconnected.org/discussion/comment/260389#Comment_260389

Thank you for sharing your experiences.

Dorse

https://alzconnected.org/discussion/74796/knowing-doesnt-change-the-losses

Momikins, I am curious as to your age?? I am 80, diagnosed 5 months ago with early alzheimer's. This diagnosis is life changing for sure. Do you plan on getting the infusions? I have been waiting 5 months after approval to start the infusions, no infusions yet.

momikins

I am 74, and am fortunate to live in Madison WI that has access to a variety of treatments. I will describe my first experience which will occur on 2/26/26 (seems like a magic #). The process includes receiving the infusions and remaining 2 hours post infusion for observation. Please deligently pester whoever has been identified as your infusion center, make sure they are processing your prior auths etc. with social security. The first infusion center that I was referred to lied, said they had submitted to Social Security but SS had no record of them submitting. They finally admitted to my doc that they didin't know how to process the request. It is hard to be our own advocates, and I do have family that will help, but as long as possible I can,I want to manage my own process. Viv

Dneige89

Hello. I am also a 74F. What anti-amyloid infusion did you choose? Wishing you all the best!

GEH

Hi. I'm almost 69yo F. Just had my 9th infusion of Leqembi. I "feel" that the is actually might be helping. The almost constant feeling of being "in a fog or a deep well" all the time has seemed to have cleared recently. I have occasion fogginess but it is sporadic and normally stress related. My memory, or lack there of, lol, persists but does not appear to be getting worse... The actual process of getting the infusions is annoying but not horrid. Normally just 10 mins or so of prep time plus 1 hour infusion time. I think only the first time did they ask me to sit there and wait for an hour or so in case I might have negatively reacted to something. Now, when the infusion is done... they kick me out 😊. My mother passed due to Alzheimer's probably about forty years ago. I do not believe there was any treatments at all at the time. I feel blessed to live in a time that there are drugs available that seem to help.

Dneige89

Wishing you the best of luck!🤗

David1946

Sorry ihave been away for so long. I've been adjusting to living at the Chelsea Veterans Home. With my inconstance along with my dementia and I've realized I must get to my life the way it is. I thank God that I have a lovely wife to help me. ( if jt wasn't for i would probably died a long time ago she's the one that got me into the Veterans home.)I only have regret my wife has sold the house and now lives inN.H. withe her daughter in an in law apartment and it is over an hour away so we don't get to see as often as,we would like but we talk on the phone several times a day.

Nova1

I was diagnosed with MCI about 4 months ago with the complicating factor of excessive iron deposits on my brain. This diagnosis keeps me from the two common infusions.

I have two questions/requests.

Are there fellow Alz patients out there with similar diagnoses? If so, have you been prescribed any treatment options to treat this disease other than to treat memory loss?

Is anyone out there aware of any studies in regards to this situation?

Please let me know. This is a very frustrating and scary place.