Early Onset Alzheimer's at 49

ForgetmenotJen · January 5

Hello,

I was diagnosed with early onset Alzheimer's in October at the age of 49.

I've had the the test and it does show I have one variance of the APOE/4 gene and the only kind of Alzheimer's we have my family is on my mom's side and they were diagnosed in their middle to late '70s.

This is just been a shock I knew something was wrong but I just thought I was getting old.

My career for the past 25 years has been IT services and analyzing and the last job I had this summer or tried to get I got fired because I couldn't complete a certification for the first time in my life.

I have to say this is extremely humbling and I think I'd rather have cancer.

Right now Im going to speech therapy and physical therapy and doctor's appointments and dealing with disability.

I'm allowed to drive locally and on the highways with no interstate but they let me know that I usually isn't long before they I fail the test, I won't be able to drive it all.

This just isn't what I thought my life would be and I'm just trying to catch up with it all. I thought I had a lot of time but I was diagnosed with the 4-8 year prognosis.

Jen

GEH · January 5

Hi Jen,

I am so sorry to hear about your diagnosis and we are all here for you. I have found this group not only supportive emotionally etc. but also for a wealth of information and resources.

geh

Watson1 · January 5

forgetmenotjen hey ya there i have alzy im 71 your 49 bit young to be in the same boat but hear we are.you are in a hard place now but you will learn how to except the new ,different you.learn of all the resourseses available , read of others personal adventures with alzy, find friends who have alzy,i found some through alzheimer chapters, very help full have some that are close to your age. i have trouble with speech, spend time keeping track of my self, why when im doing A i miss B and end up at C. back track again. can't drive so i got an e bike love it. my wonderful wife of45 years is may care partner you will need somone to help with important decisions . i work on a painting ever day it helps with centering and a good safe place to go to when you need space. you will learn the new road and you are not alone always ready to hear your next alzy adventure……….

lmikuls · January 10

Hi Jen, First off, my heart goes out to you and your diagnosis. My best friend is also living with early onset Alzheimer's. Have you found any online groups that she can log into? She is 52 years old and is seeking out others who are experiencing similar symptoms. She wants people she can talk to and her husband is sort of anti therapy. I'm trying to find her an online group because it's difficult for her to sift through forums like this one. Thank you!

ForgetmenotJen · January 11

I'm so sorry your friend has this despicable disease!

I tried to find online groups but most aren't moderated, unfortunately.

Most groups I see are for caregivers and I understand but what about younger folks? Where's our groups to support each other?

Its disappointing to say the least.

Watson1 · January 12

forgetmenot jen have you tried the Alzheimers society dementia support forum the have a section devoted to the younger folks i found zoom dementia friends through local dementia support groups. keep trying there plenty of us out the ready to give a hand no mater what………..

ForgetmenotJen · January 12

I will check on that. The one in my state is 3.5 hours away but I'll check if they have zoom meetings. Thanks for the tip

Matoaka2 · January 13

I've recently been diagnosed with Alzheimers. For the past 6 yrs I've been diagnosed with mild cognitive decline but it just started getting worse. The memory clinic I go to had me go through a spinal tap, mri, amyloid PET/CAT, and genetic testing. All tests revealed frequent Amyloid which is now in the gray matter of my cortex. I also carry double APOE 4 genes. My mom and dad had Alzheimers. My neurologist wants me to start the Kisunla infusions. I'm scared 😱, depressed, and still numb from the diagnosis.

ForgetmenotJen · January 13

I'm so sorry, this disease just sucks!!

I only had 1 APOE/4 variant and I go on January 30th to see if I qualify for Kislu ia treatment too.

I have enrolled in some clinical trial but not heard anything. My fear is just dumping myself on my family.Im visiting memory care facilities, updating wills and throwing everything I don't use out. 🤦

lfaust58 · January 14

Sorry that you're going through this. Have you had a PET scan yet? My neurologist wanted to verify amaloyd plaques before making a DX

ForgetmenotJen · January 14

Yes, I had the Amaloyd PET scan in September.He said it was worse than he was expecting.

Dorse · January 14

https://alzconnected.org/discussion/comment/263471#Comment_263471

Would you mind sharing your age? I agree that hearing this diagnosis is awful, and then there are all the decisions to think about including infusions.

Dorse · January 14

ForgetmenotJen · January 14

I was diagnosed at 49 and am 50 now.

Watson1 · January 14

matoaka2 infusions are a route to take after very careful study to see if you qualify. i have alsy but because of medical conditions can't have infusions. i am on doneprosol for over 2 years now. tasting show im still stable in the gamut of this disease. because of you history your knowledge of what's ahead is more shattering. but every one is different. now that you know you will learn to understand your new you and great your self " so what's up alsy what should we do today and what kind of tricks do you have up your selves today to try to confuse me. i know its hard but you have much time to do what you can. i work on art work ever day to give me sanity in this journey. also have sever figits to calm me when im out and about. its adaption to the mind tricks and finding the ever changing game and different ways to play, next, your move…….

Roxygirl · January 22

The Alzheimer’s Association hotline will supply you with a list of online support groups through Zoom in your area and they are facilitated by Alzheimer’s.

eaglemom · January 23

Keeping active is vital. Zoom meetings aren't as good as in person, but they work. The ALZ Assoc does a good job of referring programs that they support. There are many other programs available, if you can find them.

You might try Dementia Friendly America. Personally my DH & I attend a daily zoom 10:30 - 11:30 that is a breakoff from them. Wonderful program. Look up Memory Cafe's and see what information you can find. We also attend one of those twice monthly. We are in a large city so its different than in other places, but, both of these programs are on zoom also.

Just start Googling and you might be surprised at what you come up with.

eagle

ForgetmenotJen · January 23

https://alzconnected.org/discussion/comment/264255#Comment_264255

Thank you, I'll look into it!

Rosielou2 · January 27

https://alzconnected.org/discussion/comment/262745#Comment_262745

Thank you for this hope.

Rosielou2 · January 27

Rosielou2 · January 27

Me,too.

Rosielou2 · January 27

Mckinney930 · February 19

https://alzconnected.org/discussion/comment/263285#Comment_263285

That's been my experience as well. Very frustrating when you are trying to figure out what it means, what you need to prepare for, and what to expect. I am very disappointed that support for the alz patients is non-existent.

Early Onset Alzheimer's at 49

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