Newly dignosed

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.

Hi! You are a person I want as a friend! You give me hope! I was diagnosed a month ago. I am trying to learn as much as I can. I'm going to a support group next week and therapy the week after. I will see a neuropsychologist in September. My mother had Alzheimers. She died 20 years ago and I know so much research has been done since then. I'm trying to have a positive attitude!

Thank you for the response. I'm thinking about people treating me differently as I progress through this journey. Has that happened to you? I'm hoping it won't, but I still think about it.

I was diagnosed six weeks ago, which explained why I have few memories of many of the things I did with my husband years ago. The neurologist told me that I should only use short recipes when I cook but I have ignored his advice. It takes me a lot longer to cook something that has lots of ingredients but I think that is a good way to keep my brain working and Randy is always there to help me if needed. I feel like so much has changed in the way I approach life. Yet, my friends don't see any changes in me, which is good. I will soon start Ibquembi infusions. I am hopeful that will slow things down as long as possible. I'm 82 and praying for the best. This is my first time on here and I think it is going to really help. Take care.