New diagnosis

pz1949

Hello. I'm a 77 yo female newly diagnosed with very early Alzheimers. I told my doctor about a couple of experiences that I thought could be more than old age cognition and she offered me the p tau 217 blood test. The result was 0.28. She then ordered an MRI which was determined to be 'normal for age'. She started me on Aricept right away. I got an appointment with the nuerologist who founded the Biggs Institute for brain health at University of Texas Health Science Center in San Antonio. I got the appointment for September 29, so I'm feeling antsy knowing that it will be 5 months before I see her. I suppose that is okay since it has been caught very early, but of course I wonder if waiting this long for a PET scan and any added treatment is wise. I need info on what specifically I can do to help myself while I'm waiting. This question is one I intend to ask on my next PC appointment next week. Any suggestions on what else I can do would be appreciated.

flowerchild0610

I am 76 (77 in June) and was diagnosed last week. It wasn't a total surprise because I have been experiencing some symptoms for a while and my husband is the one who originally brought it up. Unfortunately he was right. Still kind of numb and not sure where to go from here. Also we moved to another state last weekend so that has been less than ideal. All new doctors among other things. Any suggestions about what to do or not to do would be appreciated. Thanks for your help. Most of the reading I have done has been either for professionals or caregivers. I would really like to hear from folks who are in the middle of it.

LBC83

I noticed my memory wasn't as sharp as it used to be, so I brought this up with my Nurse Practitioner at my annual physical. She referred me to the Lou Ruvo Center for Brain Health at the Cleveland Clinic, where another Nurse Practitioner administered a quick memory test. My score showed memory issues, so they immediately prescribed Aricept and a more detailed memory test. I also scored poorly on the more detailed memory test, leading to an Alzheimer's Disease (AD) diagnosis in April 2024.

My Nurse Practitioner recommended starting on Leqembi, an anti-amyloid drug that had recently been approved by the FDA. My first infusion was in June 2024.

Fast-forward to today, this June I will have been receiving Leqembi infusions for 2 years. Since my diagnosis, the FDA has approved a second anti-amyloid drug (Kisunla). So now patients have a choice in treatment.

Kisunla and Leqembi are not cures for AD. While they excel at removing amyloid plaque (a hallmark of AD), they are not so good at removing tau tangles which damage neurons in your brain from the inside of the neuron (amyloid plaque exists outside of neurons). It seems that much of the cognitive decline associated with AD is due to tau tangles within neurons. Thus, Kisunla/Leqembi generally slow, but do not stop, the progression of AD. But these drugs do provide hope to patients like you and I who have been diagnoised with AD. The word "hope" previously hasn't existed for those of us with an AD diagnosis. There are currently 158 drugs being tested in 192 clinical trials to fight AD. A couple of these drugs specifically target tau, and they are being tested in combination with anti-amyloid treatments (sort of a double-barrel shotgun approach to attacking AD). So my hope is that my cognition will hold out for a couple of more years, until more advanced drugs become available which will halt the progression of AD in my brain.

I should note that Leqembi/Kisunla do have risks. Some patients experience reactions to the infusions themselves, while others have reactions to the active drug. These reactions are usually mild and can be mitigated with simple treatments. However, some patients experience brain bleeding or swelling, referred to as ARIA. Most who develop ARIA have no symptoms (the problem is discovered in MRI checkups after early treatments), but some develop severe ARIA symptoms and a few have been hospitalized. So there is a danger with these new drugs.

There are several things that you can do right now to help. The Alzheimer's Association website has a "Brain Health Habit Builder" that guides you through steps to improve your brain health. These are simple things such as challenging your mind, getting enough quality sleep, exercizing, stop smoking, eat healthy foods for your brain (I follow the MIND diet), and controlling your blood pressure.

https://www.alz.org/help-support/brain_health/brain-health-habit-builder/start