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!

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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.

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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.

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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

Caregiving

What Is This?

January 15, 2019



What do you see in these photos?

I see . .

  a straw wrapper, that is now garbage  

•  keys  

•   a bill / mail  
 
 •   a receipt     


Can you imagine looking at these items and no longer knowing what these items are or what they are used for?


My mom has started to ask us more questions lately, and they are usually asking the question "what is this?".

We explain what these items are to my mom. She listens and maybe says "oh". The saddest part about this is. . . . .  no matter how much we try to explain it to her, she can not retain the information. 

A new day comes, and my mom will still ask the same question that she has asked before. "What is this?".  Still having no idea what these same items above are.

This Dementia Journey has made me be thankful for the most littlest things that most may never think of. I am thankful that I know what these items are.

My mom will never know or remember again.

I'll keep remembering for her.

Holiday Fun

A Special Visitor at Memory Care - Anything is Possible

December 18, 2018



We had a special visitor visit Cindy at memory care last week. It was one of Cindy's best friend that she met during her working days, back in the early 2000's. Cindy would call her "Debbie, Debbie, Debbie". 

Debbie came to visit Cindy, knowing that Cindy, wouldn't remember her. Debbie wanted to visit anyways.

I was nervous of how it would go because my mom has been different lately. It went perfectly and there was no reason to feel nervous. Debbie came in with love in her heart and handled Cindy perfectly. My heart was filled this night, seeing the caring love, that was shown to us.

Debbie showed Cindy pictures of both of them together. Debbie and her husband sang beautiful Christmas songs to us. They drew in a crowd of others that live at memory care, too.


This was a memorable night.

I learned that . . . . 

If you open up your heart with love, anything is possible.

Thank you, Debbie, Debbie, Debbie, & Randy, for making our night by bringing in Christmas cheer and love!


Holiday Fun

It's Beginning To Look A lot Like Christmas!

December 03, 2018



It's beginning to look a lot like Christmas! Everywhere we go!

The Christmas tree is up.

The Christmas decorations are hung. 

Snow is falling. Snow is everywhere we look. On the ground, roads, and rooftops.

Christmas lights are up all around. 

Christmas music is playing on the radio. Christmas movies are playing on the tv.

The gloves & scarf have been brought out for the first time.


Life with Dementia and Christmas time seems so different, almost 5 years into Cindy's diagnosis. It's not quite the same. We try to make this time of year, as well as we can, for Cindy. Just being together, laughing and smiling, is enough for us.

We've been able to watch the snow fall, listen to Christmas music on the radio, look at the decorations, and look at the Christmas lights on the houses with Cindy.

Cindy might not know that it's Christmas time and December. She might not know the meaning of this time of year. That is okay. We hope she can just feel the love that we have for her and we only hope that we can bring a smile to her face.

Hold your loved ones tight this holiday season and smile & laugh together. That is what we will be doing.

We wish you all a 

Happy Holiday Season 

Full of Love, Smiles & Laughter!

Activities

THANK YOU! THANK YOU! - AFTD Food For Thought 2018 -

October 20, 2018



We were able to participate in the AFTD Food For Thought Event this year! There are events for AFTD Food For Thought in ALMOST every state in the USA, that occur, anywhere from the last week of September to the first week of October. Some states have many different events, some just have 1. They all have to do with food and are unique in their own way.

Paul and I debated if we should do a Food For Thought Event or not. We had never done one before. We decided that we could make a difference, in some kind of way, so we decided to go for it.


We were embraced by offers from donors, sponsors, the FTD community, family, friends, supporters, and just so many people to offer their support, help, and donations. There are so many to thank and we thank you! We noticed everyone and just want to thank everyone so much for reaching out & for your support & love! Thank you for making this event a success!

We raised money for The Association for Frontotemporal Degeneration & raised so much awareness to Frontotemporal Dementia.

With your help, we raised $3,420!


The usual response we hear, when we mention FTD, is that people have never heard of it before. It is a common occurrence to hear this. That was us, too. We hope that one day, everyone will have heard & will know about FTD!

Thank you! Thank you, everyone! We can't thank you enough for all that came together to make this event successful!

We were all busy that we didn't get many photos taken. These pictures are some of the photos that we were able to take. My favorite photo is Cindy's 3 grandchildren wearing their AFTD sponsor shirts, in support of their grandma, who has FTD. A priceless photo to me.



This event we did was in honor of our mom, Cindy, and all others that have been on the FTD Journey, too!

Later Stages

Simple Gestures

September 12, 2018



I've been thinking a lot lately.  


I've been thinking that I will never hear my mom say these sentences to me, by herself, again . . . . 

I love you!

I am so thankful for you!

Thank you for all you do!

I missed you!

I'm so glad that you are here!

I need your help!


It's sad, but it's true. It makes me sad that my mom isn't able to express herself anymore. She has stopped texting me her "I love you" texts, for awhile now, too. Texting was the last way she was writing/telling me, "I love you".

She is able to show me these things in SMALL GESTURES though, and I'm thankful that she is still able to do that. 

My mom shows me her huge big smile and laugh when she sees me. That smile and laugh shows me that she is happy to see me.

We always have a routine where we go to my mom's room first, before we leave somewhere. My mom will put her arm around me first, and squeeze my arm a few times, while we are walking to her room. This is one of the only gestures my mom will do right now that expresses to me her love and appreciation. I always hold onto this gesture, and appreciate it. I know I have a smile on my face when she does this to me, because I notice it every time. It is one of the only gestures, that my mom is able to do, to show her love for me.

I have learned that you will never, ever, fully appreciate something, in it's entirety, until it's the last thing you have left or until it's gone. I never knew how valuable a simple gesture is until now.

Simple gestures are bigger than you think. So big.

Next time someone touches you, squeezes you, gives you a giant hug, gives you a high five. . .  notice it and embrace it!

I'm so thankful for the simple gestures in life! 

Simple gestures are all that we have left now, because of Dementia! 

Simple gestures mean so much, when it comes to Dementia!



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