Did You Miss It? - A Son's View On Frontotemporal Dementia

October 16, 2017

My brother wrote a post on Facebook about our journey with Frontotemporal Dementia. I wanted to make sure you all saw his post, too. I'm posting it here to keep record of it. Thank you, Jon, for writing this! Please like our Facebook page to see all of our posts. Thank you to everyone who is following our story. Our goal is to raise awareness about Frontotemporal Dementia and because you are reading this right now.... you are helping us in our goal to raise awareness about FTD!

I never imagined being on the journey that we have been on with my mom over the years. She was diagnosed with Frontotemporal Dementia or FTD coming up on 4 years in November. We have learned a lot. This is different than the more common type of dementia that we all know as Alzheimer's. I'll never forget the doctor telling us kids there at his office with our mom at age 56 that this disease in his opinion is much more difficult to care for. He mentioned that her brain had shrunk to the size of an 80 year olds.

My wonderful sister Natalie and her husband Paul are amazing people. I can't thank them enough for what they do to care for our mother. They have put together a facebook page and blog to share and hopefully help anyone else out that comes across this disease. We have attended a support groups and with our own experiences we have learned a lot.

Here is a video showing some of the degeneration that she is going through as she didn't know how to sign her name. She was also confused at the date and didn't know her social security number for the first time. We have gone through some difficult times watching her mind literally fade away. We make the best attempt to be positive and enjoy every minute we can with her. We love it most when we can just laugh with her.

Written By Jon (Cindy's Son)

3 comments

KathleenOctober 22, 2017 at 4:25 AM
Thank you Jon for writing this post and for giving us all a little more understanding of FTD. I saw on 60Minutes tonight of a place in Colombia where 50% in this area have a genetic form of dementia that hits around 40 year olds. This type of dementia lose memory and die young. An Australian doctor thinks he will have a cure in about 5 years by preventing the protein from forming in the brain. I am sure that many are working on the various forms of dementia.

Thanks again for sharing and we will feature this post on Friday.
Kathleen
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UnknownOctober 23, 2017 at 11:37 PM
Thanks so much for sharing this with us, and I can’t imagine what you’re going through. Its lovely to hear that you’ve set up a support for other, when you’re going through such a difficult time. Stay strong and thanks for linking up at #fortheloveofBLOG. Claire x
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Dr. Elise HoOctober 27, 2017 at 4:33 PM
I had not seen the original post and am happy that you shared it again. I will visit it soonest.
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