1. Do Young People Get Early Onset Alzheimer’s?
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? Have you heard that saying before? If you’re old enough, you have heard it! I learned a little while ago that I have Early Onset Alzheimer’s and I’m learning something new every day about this condition. But the biggest thing is it’s downright frightening!
I am under the age of 65 therefore it is considered 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! 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. And 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’!
At the writing of this post, I am 64 years old, officially diagnosed 3 years ago, searched for 2-3 years prior to that to find out what was bothering me. 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’d 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. New information was hard to maintain.
Short-term memory was and still is a disaster. It definitely had a major impact on my everyday living (as slight as the condition was). 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 even notice it in a relative or friend because, like me, it may start out soooo slow and others won’t or don’t notice it! 🙁
2. Are There Stages Of Alzheimer’s?
Yes! The problem was 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 diagnosis, I just didn’t think of it affecting me 🙁 I thought it could be any number of ‘illnesses,” But when these uneasy feelings of ‘missing’ something came about, I started to wonder. So I went to various doctor’s searching for ‘something.’ And then the fear ran through my body when, in my early 60’s, I found out I had Early Onset Alzheimer’s!
Now, it’s been about 3-4 years since my diagnosis and the more it progresses, the more frightened I become. Although it appears to progress slowly, I know what it looks like and what it feels like. I know the frustration and sometimes embarrassment that comes along with the early stages and my life struggles. I learned that there are Stages of Alzheimer’s. So, I thought I’d share that information with others like me or someone you might know. You just don’t wake up some morning and just have Alzheimer’s. Many people just don’t acknowledge the weird things that go on as an illness. Maybe we’re just getting old. No problem. And we continue to struggle with life stuff.
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. Then there is short-term memory loss which progresses at its own pace and is different for every individual. Click on the link to this article, Stages of Alzheimer’s. to learn more about what happens to you or a loved one. For me, at the writing of this blog, short-term memory is my biggest issue.
3. Diagnosed – What To Do??
Once diagnosed, it is critically important to:
- Know and understand the upcoming symptoms.
- Prepare yourself and your family to be understanding and adjust because the changes can be incredible frustrating for every family member.
- Learn about clinical trials that we can participate in as they work on a cure.
- Know it is critical to know about the medications that currently help slow down the progression of the disease.
- Be aware of the clinical trials that you may be able to participate in that will help you and others.
But 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 ________________________
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?
1) Because I struggled for too many years knowing something was up and trying to find out what was so ‘weird.’
2) Because I didn’t know who to talk to or where to get help.
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 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 analyze 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.
4. Early Onset Alzheimer’s What should we do?
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 and 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.
A.A.S. B.S., M.I.S.M,
Florida Alzheimer’s Organization Advocate