Well, what did I expect?

Institches

My dad was diagnosed with Alz when he was 73...It came as a shock. Little did I know at the time that 5 or 6 (of 11) siblings of his had/would also go through this. Should have guessed it would be passed down. At the time, I went to classes offered by UC Berkeley and found out everything I could about it (this was about 1998 or 1999 I think). I took over driving for the folks, taking them to Dr appts, marketing and stuff. My boss was very accomodating, his mom was going through the same thing. I was at a loss as to what to do to fight this. Dad was taking Aricept, and when he got a little worse, I cajoled his dr into getting him Namenda...and was told it wouldn't cure his problem, just prolong it. I pushed anyway. But by that time dad refused (the thought mom was poisoning him). After they had moved to assisted care, and I had to move all of their belongings into storage, I came across a stash of the namenda pills that he had cached away.

2 years ago, my younger sister called and told me she had just been diagnosed with early onset Alz...She had APoE4/APoe4 genes. The deal had been that if either of us found out, we would tell the other and our brother. So of course, I made an appt with a Neurologist and tried to find out what if I was affected. Well, what did I expect? I have APoe4/Apoe3, so I was in the "probably" category. No "Cure" of course, but Neurologist set me on the path to get Kisunla infusions, which might shrink the tangles and prolong things a bit. I have 2 more (of 18) infusions coming and they will check again to see how much shrinkage there has been. (I had an earlier CT scan and there was some shrinkage, but not enough yet. We had called my brother...who at first refused to be tested but later relented...Yep, another early onset. But in his case, he won't try to get help until after Dec of this year as that's when he's eligible for Medicare. Otherwise the cost would be too much.

I feel like I'm mostly okay. I do forget things but not everything. I think maybe my sister and brother maybe started a little earlier (and are worse off now than me because they both smoked and they still do). So maybe they're further along this journey than I am...

Anyway I live in hope that the infusions help...I hope the best for everyone else too. Now where did I leave my phone again? Sheesh!

FarmerGF

Wishing you the best going forward. Thanks for sharing this and I hope you keep sharing. 🫂❤️

GEH

https://alzconnected.org/discussion/76924/well-what-did-i-expect

Your sign off to your post was hilarious!! I can totally relate!! I lose my phone at least 5000 times a day. Of course I always panic which makes me panic more, and then I find it and a few minutes to a few hours later and then shortly after set it down, and I lose it again. Lol. I would to devise something that connects to my wrist, that has a long retactactable steel cable l on it so that when I it down somewhere I I start to walk away it retracts quickly, and my phone smacks me on my wrist!!! Kinda like, positive and negative reinforcement at the same time. LOL. Have not yet worked out the details so if there are any engineer our there that might any ideas, I would be appreciative. LoL