Newly diagnosed Early Onset Alzheimer's

mpowrie

I'm new here. Just diagnosed at age 54. Looking for answers on my outlook of life (longevity). I keep reading that if I am diagnosed EO, my life expectancy is short, how short?

Jcarr

I was diagnosed at 59 with MCI and then EO. I feel for you because my Neurologist told me to go home and get my affairs in order and not to expect more than 5 years. I am now 71 and living a wonderful life! The best advice I can give you is to try and stay as active as possible. Yes, do the things you want to do and live every day to the fullest. I got involved in clinical trials with the University of KY Sanders Brown on Aging institute. I did not do any trials that required me to stop taking the medicines my neurologist prescribed, but was willing to do most of the trials. That was long before Leqembi was approved by he FDA. I have gone through the 18 months of infusions every 2 weeks and am now on indefinite injections I take at home every week. I have to believe that it is worth it. It will not take the disease away, but I have seen it slow down the progression in myself and many people in my dementia groups. Involve yourself in support groups that meet in person or online. Make sure they are younger onset.

Also, apply immediately for social security disability. Alz is considered a disease to be fast tracked through. Their website will give you all the info you need to get started. I filed for mine and was approved within a few months rather than a year or more. It was a Godsend for us. The only thing is, you can’t get on Medicare until you’ve been on disabiltity for 2 years so try to maintain any health insurance you can. Oh, clinical trials pay for MRIs and PET scans so you don’t have to; so find a trial that does those. I am also in a program for life called ADNI. I go once a year for neuro-cognitive testing but I also get PET scans and MRIs. Also, Dementiaminds.org is a great place to go. They have videos posted online of what kind of support groups they have. They were started and operate by persons with Dementia. It’s amazing.

mpowrie

https://alzconnected.org/discussion/comment/278554#Comment_278554

First of all THANK YOU SO MUCH for your message. Sorry it took me so long to reply…..I'm just so new at navaigating around in this new life with EO alzheimer's. I'm glad to know you were able to extend your life. Thanks great news. I hope I qualify for the infusions. I was APOE4 positive and with both sets of genes and I've heard that will not treat you if so. I have some more digging.

Thank you again,

Michelle