More About FTD

Rare Disease Day - Frontotemporal Dementia

February 28, 2019

Today is Rare Disease Day! Would you have thought that Frontotemporal Dementia is a rare disease? I wouldn't have. A form of dementia on the rare disease list? Dementia is so common! No Way! 


YES, Frontotemporal Dementia is a RARE DISEASE!


What is a Rare Disease?

A disease or disorder is defined as rare in Europe when it affects
fewer than 1 in 2000.

A disease or disorder is defined as rare in the USA when it affects 
fewer than 200,000 Americans at any given time.


Why is Frontotemporal Dementia a Rare Disease, you might ask?

Here is why and learn more about FTD.

· FTD affects an estimated 60,000 Americans.
*Compare this to 5.7 million people living with Alzheimer's in the US.* 

· Many in the medical community are still unfamiliar with FTD.

· It takes an average of 3.6 years before getting a diagnosis.

· The onset age ranges from 21-80 years old

· FTD is the most common form of dementia for people under 60.

· FTD is frequently misdiagnosed as Alzheimer's, depression, psychiatric disorders, Parkinson's Disease, or others.

· FTD represents an estimated 10%-20% of all dementia cases.


This day and every day (to me) is to help raise awareness to this rare disease! My whole goal & purpose of this blog has been to raise awareness to Frontotemporal Dementia. I will always be a broken record, when it comes to this disease.

Please help us get the word out about Frontotemporal Dementia, by clicking, below, under . . .Share This Story! Thank you! :)

Later Stages

I'm No Longer A Daughter In My Mom's Mind

February 13, 2019

My mom was sitting up to a table eating her dinner  last month, one evening. We had just barely dropped her back off at memory care. I chatted a little bit with her friend that sits next to her during meal times.

I decided that I needed to let them eat, instead of talk to them. I started to walk away to my mom's room. As I started walking away, my mom's friend asked my mom "is that your daughter"? He asked her about two times. I was curious on what her answer would be, so I turned my head to see. My mom shook her head as to say "no".  

A caregiver was helping another resident eat at the same table. She knew that I was my mom's daughter. She asked my mom "is that your daughter"? My mom shook her head again and said "no".

This may sound like a sad story, which in reality it is. I have been preparing myself for this recently, so it wasn't a complete shock.

I am just thankful that my mom thinks I'm a cool person to be with and I make her feel good when I'm with her. 

A Daughter. 

Now a Cool Person.

I may not be a daughter in the mind of my mom anymore, but I am someone that makes her feel good. I am thankful for that. My mom greets me with happiness every time that I see her. I am just thankful that she is still happy to see me & knows that I am someone that makes her feel special.

"Why do we close our eyes when we pray,

when we cry, when we kiss, when we dream;

because the most beautiful things in our life

are not seen but felt only by the heart.

- Unknown

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