What Do You Mean I’ve Got Alzheimer’s?

1. Do Young People Get Early Onset Alzheimer’s?

The answer is Yes! What do you mean I’ve got Alzheimer’s? That’s what I said when I was diagnosed! Shock! Distress! It can’t be! I was in my late 50’s when diagnosed with Early Onset Alzheimer’s! Well, we learn something new every day, right? In this case, it was absolutely frightening. I have Early Onset Alzheimer’s and I’m learning something new every day about this condition.

At the writing of this post, I am 65, but my diagnosis was approximately at 61-62 years of age, making my diagnosis of Alzheimer’s Early Onset by definition. Therefore, it was explained that I had Early Onset Alzheimer’s. After the psychological and emotional devastation, I experienced, I felt that I needed to do something to help others like me. Why? Because it took years for me to get diagnosed. Yes, years, going to various doctors to find out what was wrong. In the early stages of Alzheimer’s, this condition is very subtle, vague, and frustrating. We struggle through day-to-day living not understanding why we have strange daily occurrences of confusion, forgetfulness, and missing information. Why is it so hard to diagnose? Because some people get it even earlier than 55 and a doctor may not investigate or think of Alzheimer’s due to our ‘younger age’!

I had no clue that it was Early Onset Alzheimer’s. It wasn’t forgetfulness like most people think. I started out with a slight confusion about things I already knew. Took me longer to learn things when I had always been able to catch on quickly. For instance, feeling frustrated and uncomfortable trying to remember the name of someone I just met or trying to recall a place or thing. Old memories were intact. During this time, new information was hard to maintain. It was identified as Short-Term Memory loss.

My short-term memory was and still is a disaster. It definitely had a major impact on my everyday living (as slight as it may appear to others who know me). Although this disease runs in families, we don’t really think about it until it affects you or someone close to you. You might not notice it in a relative or friend because, like me, it may start out so slow that people just don’t notice it.

2. Are There Stages Of Alzheimer’s?

Yes! I didn’t know there were stages of Alzheimer’s. I didn’t know Early Onset Alzheimer’s symptoms. I didn’t know there were different types of dementia. Even when my mother had it, we thought she was always a little ‘weird so we didn’t even bat an eyelash at her behaviors. Even after I was diagnosed, (you can read my story to diagnosis here), it was all new to me. Besides some various confusion once in a while, I was and still am pretty much living my life the same as before. Even though I was aware of my mom and other family member’s when they had it, I just didn’t think of it affecting me 🙁 I thought my issues could be any number of ‘illnesses or just natural agining” but when these uneasy feelings of ‘missing’ something came about, I started to wonder. So, I went to various doctors searching for ‘something.’ Then the fear ran through my body when, in my early 60’s, I found out I had Early Onset Alzheimer’s!

Diagnosed

Now, it’s been about 3-4+ years since my diagnosis and the more it progresses, the more I become more frightened every day as I forget little things during daily living. Although it appears to progress slowly, I know what my future looks like. I know the frustration and embarrassment that come along with the early stages of ALZ. I’m full of embarrassment daily as I repeat myself quite a bit, so all I can do is share what I’m learning and ask my family& friends for patience. I learned that there are Stages of Alzheimer’s. Make sure you click on the Stages of Alzheimer’sfor a clearer understanding of what might be happening to you or your afflicted family member.

3.1 Resources Once Diagnosed

I’ve decided I wanted to help others who felt like me…maybe knowing something is or was wrong inside, but not knowing what it was. That’s how I felt for years. I asked myself continually inside my mind, “What was wrong with me?” Something ‘felt’ wrong. My short-term memory was really short! I seemed to forget little things. When I was finally diagnosed, I started a Page on Facebook to provide information on Early Onset Alzheimer’s. Click here _________ to join the Facebook page of many who are afflicted with Early Onset or are caregivers where you can share stories, feeling, and information, etc., knowing you’re not alone. Additionally, anyone with Early Onset Alzheimer’s (and caregivers) can look for new updates, converse, and share with others your successes, your struggles, etc. by clicking here. I thought I’d share that information with others like me or someone you might know like me. You just don’t wake up one morning and just have Alzheimer’s. Many people just don’t acknowledge the weird, slight memory issues that come with EAO. We think “Maybe we’re just aging” as we continue to struggle with forgetting things.

4.0 How To Prepare: What Do You Do?

Once diagnosed, here’s some of the things what you can do?

Know and understand the early and upcoming symptoms so that you can go to a physician for clarification. It could be another condition or disease that may need to be treated differently.
Prepare yourself and your family to be understanding and adjust because the changes can be incredibly frustrating for every family member.
Research/learn about clinical trials that you can participate in as the medical field works on a cure.
Know the medications that currently help slow down the progression of the disease.
See a Neurologist and ask for them, if diagnosed with Alzheimer’s (or Early Onset)
Be aware of the clinical trials where they are investigating and testing cures for Alzheimer’s…a cure that you may be able to participate in what will help yourself and others.
More importantly, it is critical to know you are not alone. Resources are all around, particularly the Alzheimer’s Association in each state to provide educational assistance, point to specific organizations to help, and provide support for family members. Click this link for NIH. Click this link to find your /states/local Alzheimer’s Organization to provide you and your family additional resources. Additionally, they can keep you up to date on the current status of working toward a cure for Alzheimer’s. ________________. Click this link for ________________________

Many people don’t know there is a problem or at least don’t acknowledge it in the beginning. We know that we’re all getting a little older and that is expected. But how do you know the difference and when to get a diagnosis? It took too long to diagnose which prompted me to search for others like me.

I’ve decided I wanted to help others who felt like me… maybe knowing something was wrong inside, but not knowing what it was. I asked myself continually “What was wrong with me?” Something ‘felt’ wrong. My short-term memory was really short! When I was finally diagnosed, I started a Page on Facebook to provide information on Early Onset Alzheimer’s. It can be for yourself or a relative or a friend. Why?

Summary

Alzheimer’s is always related to dementia. Dementia is not always the first thing you notice in a person with Early Onset. It can be stretched over a period of time. It can be sporadic, daily confusion about things in your life and things you already know. But it’s so minor, you may ignore it. There is likely short-term memory loss which progresses at its own pace and is different for every individual. Everyone’s timeline on how Early Alzheimer’s progresses at individual paces. For me, at the writing of this blog, short-term memory is my biggest issue. Many things I know in the past are still intact. New learning takes a while. It’s very frightening and frustrating.

So, what do you do now? I struggled for too many years knowing something was wrong and trying to find out what was so ‘weird.’ I didn’t know who to talk to or where to get help. Because I worked in the pharmaceutical industry, searching for solutions was natural. I went on a ‘What Is Wrong With Me Hunt?‘ going from doctor to doctor for 3+ years, looking for answers. Now, some part of me is glad I know what this condition is?

The other half of me is sad, scared, stressed, and depressed knowing life has changed and soon this condition will progress into full-blown Alzheimer’s. One of the most frightening things there is in the world for me! I can watch and analyse the symptoms in me because I saw what happened to the family members of my mother’s 13 brothers and sisters, as I grew up.

Alzheimer’s is always related to dementia. Dementia is not always the first thing you notice in a person with Early Onset. Usually, it is daily confusion about things in your life and things you already know. There is likely short-term memory loss which progresses at its own pace and is different for every individual. Everyone has a different timeline so understand that everyone’s ‘timeline’ will be different. For me, at the writing of this blog, short-term memory is my biggest issue. Many things I know in the past, are still intact. New learning takes a while. It’s very frightening and frustrating. Once diagnosed, it is critically important to:

I worked in the pharmaceutical industry so searching for solutions was natural. I went on a ‘What Is Wrong With Me Hunt?‘ going from doctor to doctor for 3+ years, looking for answers. Now, some part of me is glad I at least know what this condition is?

The other half of me is sad, scared, stressed, and depressed knowing life has changed and soon this condition will progress into full-blown Alzheimer’s. One of the most frightening things there is in the world for me! I can watch and analyse the symptoms in me because I saw what happened to other family members of my mother’s 13 brothers and sisters, as I grew up.

Early Onset Alzheimer’s What should we do?

Once diagnosed, it is critically important to do the following:

Educate. When middle-aged people start showing signs of forgetfulness, it could be something else, but after a certain age, we or that relative should get checked by a neurologist.
Living life to the fullest is what we must do! I want to spend my cognitive time helping and directing others to necessary local organizations, advising on what physicians you need to see, keep current in medicine regarding Alzheimer’s, and participate in clinical trials to help find a cure that can maybe help you along the way.
I want to keep interacting with the world as long as I can and maybe, just maybe, they’ll find a cure as soon as they did for Covid. What do you think?

Leave a message below if you have any questions. Or just tell me what you think. My goal is that We can support each other in our togetherness, not our forgetfulness.

God bless,

Leave a message below if you have any questions. Or just tell me what you think. My goal is that We can support each other in our togetherness, not our forgetfulness.

God bless,