New to Alzheimer's

Michaeleen

I'm 58 years old and have been diagnosed with early onset Alzheimer's. I would like to talk with those who have early onset also.

Iris L.

Welcome Michaeleen. I do not have Alzheimer's Disease but I was diagnosed as having cognitive impairment nos with memory loss in 2008 at age 58. I continue with treatment for memory loss. I have learned quite a lot about living with memory loss and I may be able to answer some questions for you. Please post back.

Iris

agillohio

Hi I'm Ann I was diagnosed in late November as having early onset Alzheimer's. I just turned 59.

I have no idea what to expect.

Iris L.

Welcome Ann. Every person with Alzheimer's Disease is different and has a different journey. There are steps you can take to soften your journey. Please continue to post if you have questions.

Iris

JulietteBee

🙏🙏🙏

maryannbarnsley

I am 59 years old and I received the AD diagnosis 2 months ago. I am struggling emotionally with it so much. Not to be funny, but my brain is all over the place. It just continues to race. I'm having lots of trouble with sleeping.

I meet with a genetics doctor next week to see if I even quality for Leqembi, although I'm not ready to make that decision. More conversations with my new doctors.

I am scheduled for an amyloid PET scan on 1/29.

I wish there was some sort of interactive group for people living with dementia. I have so many questions

Jordana B

https://alzconnected.org/discussion/comment/233965#Comment_233965

Did you get the PET scan results yet?

Bestillmylove

Did you receive your results from the amyloid PET Scan?

texeattle

I'm 59 and just got diagnosis. Really want to talk to us "younger ones" to see if what I'm thinking, feeling, experiencing is normal.

Calibird

Hello, I am 52 and diagnosed with early onset and I'm trying to just keep going but sometimes I get so down and depressed from the diagnosis it makes it hard. I'd like to talk to others who are in the same boat as me. My dr. wants me on leqembic but I have to go to a different clinic to get it and I have to qualify first but I'm hoping I can get on it. Even though I am worried about the possibility of brain bleeds which I'm told could be a side effect. Just trying to make it through I guess.

eaglemom

First let me welcome everyone. Next let me say that whatever you are feeling is fine. Upon receiving any kind of diagnosis it really takes quite awhile to totally wrap your head around it. It's your diagnosis and you can only handle it that best way you know how.

What I would encourage each one of you to do is to research and read. Try to become somewhat familiar with what you are going through. Sometimes people don't like to do that - but knowledge is powerful. It can help you understand what your going through. Possibly help you to not be so afraid.

Ask questions and share here, this is what we are here for.

eagle

harperlori56

I am 56 and diagnosed with MCI due to Alzheimers, All of my CSF biomarkers were positive and I have the e3/e4 gene. I am also trying to get on Leqembi but having trouble getting insurance to cover and just made a little too much to qualify for their assistance. If is very stressfull. I think the worst part is not knowing how long it will take to progress to the next stage. It is a roller coaster of emotions for sure. One think I just started doing is I am writing in a journal about this experience and what symptoms I had as well as making lists of things I want to get done. I want to have some record to pass along to my kids and family. What are all of you doing to cope?

Janutt

Hello Everyone,

This diagnosis has many emotions that only we know what that feels like. As so me have said digest it.

I was diagnosed 4 years ago at the age of 55. I was misdiagnosed with functional neurological disorder. I knew this and my family knew this diagnosis wasn’t true. my husband did believe this since he didn’t want this real diagnosis to be.

I may sound morbid or “why would you want to be diagnosed with Alzheimer’s.” I am grateful to be diagnosed with this disease. It did take a year and a half for me to get the true diagnosis.

I did go through all the testing, lumbar punctures to finally get another opinion. Although I do get some doctor's still diagnosis as the latter (FND).

I am the youngest in my family gene to have been diagnosed with this”monster” of a disease. I find it easier to fight it head on. Don’t give up! There are many people here to listen to you all.

What I do now is keep active. I am learning new things and when i can’t remember I laugh and repeat again.

I definitely have my bad days. I sing a silly song. “If I only had a heart.. do do do. If I only had a brain do do do.” This is something from Wizard of Oz. I have to find my silly humor if not you go down a rabbit hole.

I’m enjoying life. It’s definitely not an eay life I live. Lots of new and steady health issues where I can’t take the new drugs/medications.

Digest. Nothing has to be rushed.

jerastl

Agree completely with the humor and song. Thanks for sharing.

Laura2020

I was diagnosed last year with early onset ALZ. It has made a huge impact being able to communicate with others that understand what I am going through. I'm grateful for my family and they have been wonderful, but it's nice to talk with others like me.

BJL

Hello Laura I am Bobby and it is been a year for me also. My wife family and friends could no be more supportive. However, everything is different now. Lately I find myself feeling obsessive with how I might gauge the progression of the disease. I too would like to communicate with others.

Laura2020

https://alzconnected.org/discussion/comment/240338#Comment_240338

Hi Bobby, I totally Understand that! As of late I find myself being ridiculously indecisive about everything. I hate being like that! But I can't help it. It's such a weird feeling. Reach out anytime.

BJL

Thank you Laura for the response. Yes I know about decisiveness. Once upon a time in my big career I juggled half of dozen critical things and prioritized them so quickly. But now my wife has to proof my posts LOL one last question. Do you or anyone on the forum have impaired speech? It was my very first symptom and caused me to leave my job so quickly.

Laura2020

https://alzconnected.org/discussion/comment/240404#Comment_240404

Yes, that was my first symptom as well. ugh!!! It's so frustrating!

Janutt

BLj,

Speech was an issue with me as well but the biggest sign was my memory. I was failing me very quickly.

Laura2020

https://alzconnected.org/discussion/comment/240686#Comment_240686

The memory issues are scary! I started infusion treatment (leqembi) in January. So far so good. Just hoping it'll slow the progression.

BJL

I am envious! Which is kind of a funny thing to say between two people with ALZ. The Mayo doc wanted me to start the infusions but it was not an option in my home town…at least yet. Fingers crossed for sometime in the future but I hope you have good results 🙏🏼

eaglemom

The dialogue here is great - supporting one another.

Keep physically and mentally active, eat balanced meals, and sleep is vital. Know that some days won't be as good as other days - and that's fine. Enjoy life, have fun - don't wait for something to happen.

eagle

Laura2020

https://alzconnected.org/discussion/comment/240759#Comment_240759

The earlier you start treatment the better. Did doc at least prescribe an oral medication? I hope you'll be able to start treatment soon 🙏

lorainesjoy

Get on Aricept as soon as you can, your dr will prescribe. I started with 5 mg then went to 10 mg. I had no issues with taking this med, however I dis some slight side effects for the first week.

However, some people are not able to tolerate this medication. Keep your Dr informed of any sideffects.

Highly suggest genetic testing prior to accepting any infusions or experimental medication. Ask about the genetic interactions with any medication you're taking.

BJL

thanks for the advice. I have been taking Aricept and just last month increased to 10 mg 🤞