Birthdays

Raw Emotions From A Son Who's Mom Has Frontotemporal Dementia

March 26, 2019



Raw emotions coming...

62 years old with many years of dementia behind her. I won't lie I miss my mom. She's still alive, but so much of her has disappeared. She was diagnosed at 56 with Frontotemporal Dementia, but we knew well before that things weren't right.

I'm very happy that we could celebrate another year of her life. I'm so grateful for her and all she's done for me. I'm glad we can still hold her and tell her we love her. I can't get enough of her smile and laughter.

I deeply miss the cheerleader she has been for me in my life. I can't just call and get advice from her. I can't joke about the dumb things I did growing up and tell her "you were right mom I should have listened to you". I saw the fight in her to be the amazing grandma I knew she wanted to be. Now it's hard to not feel like we are just people, with an unknown relationship, that come to say hi to her. She calls another elderly man in the nursing home her son.

I live everyday with gratitude and don't get me wrong I am grateful for every moment with my mom. Yesterday was one tough moment for me. I know my mom. She loves flowers! She loved them more than anyone I know. For her to reject them and tell me she didn't want to take them with her after dinner was super hard for me. It took a lot for me to hold back my tears in front of everyone. Looking back today is a different story.

Everyone do me a favor this week. Hug your mom. Tell her you love her. Call her and have a conversation with her. Laugh with her. Joke with her. I know my mom would have been into funny gif's and meme's. Send one... do it for me. Reminisce with her about the good and the bad. Ask her for her advice or recommendation. I didn't always see eye to eye with my mom but I sure do appreciate all that I learned from her.


Written By Cindy's Son, Jon. 


3/25/19


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! 

BUT

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! :)

About Us

Help Save The Brain - Frontotemporal Dementia - #EndFTD #ThinkFTD

November 20, 2017



We are sporting our new t-shirts to help spread awareness about Frontotemporal Dementia! We are pointing to our shirts with our thumbs.

 Have you heard of Frontotemporal Dementia before?

I had never heard of FTD until the day my mom was diagnosed with FTD. I was only aware of Alzheimer's and Dementia before. I had no idea there were different types of Dementia. My purpose and goal here on this blog has been to help spread awareness to Frontotemporal Dementia, so more people are aware that it exists. FTD is a heart-breaking dementia to have, just like all other dementias are.

Frontotemporal Dementia Definition - (from the Association of Frontotemporal Dementia website)

"Frontotemporal degeneration (FTD) is a disease process that results in progressive damage to the temporal and/or frontal lobes of the brain. It causes a group of brain disorders that share many clinical features. FTD is also commonly referred to as frontotemporal dementia, fronto-temporal lobar degeneration (FTLD), or Picks disease."

FTD Facts - 

• FTD usually occurs between the ages of 50 and 60, but this dementia has also occurred in younger ages, as well. The youngest being in the 20's and the oldest as being in the 80's.

• There are currently no treatments to slow or stop the progression of this disease.

• FTD affects the frontal and temporal parts of the brain.

• FTD affects an estimated 50,000-60,000 Americans, which was noted in 2011.

• The length of FTD can be anywhere from 2-20 years after onset. The median length is 8 years.

• FTD affects decision-making, personality, social behavior, language, memory, and more.

• FTD is often misdiagnosed as depression, psychiatric problems, or movement disorders. (They thought my mom's problem was depression and psychiatric problems at first, and it took us a long time, to finally find out the real problem, my mom was dealing with.)

• FTD is one of the more common dementias that occurs to the younger aged population.

• There are subtypes of Frontotemporal Dementia which include: behavioral variant FTD (bvFTD), primary progressive aphasia (PPA) which affects language, and the movement disorders progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).

• For the complete FTD Facts, please visit: 

Thank you for reading and taking the time to learn about Frontotemporal Dementia! You are helping me in this goal, by reading this post!

 I appreciate it more than you will ever know! My mom can't help raise awareness with her voice, but I can help her, by using my voice for her! I wish she knew how much of an impact she is making. My mom does not realize she has Frontotemporal Dementia, and I have never been able to speak to her about FTD, with her understanding. 

Help Save The Brain! #EndFTD #ThinkFTD
Please watch the video below to see our fun t-shirt reveal to my mom! I helped her put her new shirt on. She had no idea that I was already wearing the same shirt.


Thank you to @WearingDementia for their fundraising and helping spread the word about Frontotemporal Dementia!

Please help us get the word out about Frontotemporal Dementia! Please share anywhere you can by clicking underneath the Share This Story area, also. Thank you! :)

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