Newly dignosed

H!!! I am 68 and was diagnosed about 3-4 years ago. Please, don't be scared. A diagnosis of Alzheimer's today is not the same as it was when my mother was diagnosed 40+ years ago. Totally different. I would first make sure you are seeing a really good Neurologist. I went to one for like two years who really sucked but I did not know any better. I am currently on like three or four meds that help control symptoms in addition to getting Infusions of Leqembi every two weeks which is a drug that actually removes the plaque from the brain that Alzheimers makes. The symptom drugs are Galantimine, Donepezil and Memantine and one more I cannot remember right this moment (not at home so I cannot look at my pill bottles lol) If you are near any type of Neurological Institute/Hospital I would try to get appointment there ASAP rather going to just a neurologist. There is a Barrows Neurological about an hour away from where I live and I see a team of doctors there on a regular basis. It has made a world of difference. My latest Neurological testing showed no changes since the last set done a year ago. That is a very good thing. I live alone, take care of myself and my kitty and still drive myself everywhere I go. There is lots of help, lots of hope and lots of really good drugs out there now days and constant research being done for Alzheimers. Breakthroughs are happening all the time. Hang in there. So glad you found this website. Stay in touch and keep us all updated on how you doing.

Best to you

GE

Hi. I’m 61 and newly diagnosed. I haven’t looked into the treatments and my neurologist didn’t go into it with me. Maybe I need to find a new one. Keep posting it helps when we connect.

I'm 66 and was diagnosed 2 years ago. I read all the articles I could, especially from the NLM archive (National Library of Medecine, and especially from the Trailblazer team, because they've done the most work on infusions and their impact over the short and long term. What I read led me to get the genetic work done right away (you need that before starting Kisunla/Donanemab, because the APOE 4 gene predicts whether you will get brain swelling or brain hemorrage. If you're double APOE4 the neurologists won't want to give you the infusions).

I was APOE negative on both sides of the family and so I lept at the opportunity to get Kisunla. And now, 6 months later, a new PET scan has shown that all Amyloid is cleared from my brain. So I'm a fan. It's true that I did get the brain swelling as a side effect along the way, but the symptoms were just nausea and dizziness - no big deal - and otherwise the infusions were super easy to get and to tolerate.

I also suggest that you do as much else as you can to stave off progression: eat healthy, ensure that you maintain social relationships (the strongest predictor of dementia!), do cardio to circulate the blood through your brain, and engage in intellectual practice - even if it's just puzzles or learning a new language on DuoLingo).

I also use Exelon (Rivastigmine) patches every day, and I inhale peppermint oil every morning, both of which help with symptoms.

As others have said, find a neurologist you trust, and who communicates with you.

Hi, my name is Constance and I was diagnosed with early onset Alzheimer’s at the age of 62 on June 1, 2026. I have had mild cognitive impairment since August 2018. Spinal fluid showed amyloid. PET scan did not show any tau. I have a Fazekas score of 2 which means I have some vascular disease and one copy of the APOE4. I am thinking with the combination it may be too risky for the infusions.