Howard's Blog

I wanted to post a link to Howard Glick's latest blog post about apathy and dimentia.

http://earlydementiasupport.blogspot.com/2012/06/ftd-and-apathy.html?spref=fb

Mother's Day Weekend

So playing Scrabble with my mom isn't the same as it used to be. Now I'm playing with my mom and FTD. I have to keep score now...she used to do that. I have to help her find words sometimes or remind her to play on a double or triple to get more points but that is okay...at least we can still play.

I decided to get her a new art set for Mother's Day. I figured if she sparks the creative juices in her brain at least a few times a week that would be a great start.

It takes a lot to get her motivated and keep her motivated, but she is so afraid of "losing" herself that I think she is willing to try anything and so am I.

I love my mom so much and am so grateful to still have her in my life

FTD Revelations

So another FTD support group meeting has come and gone.  I learned two very important things.

1.  If your loved one seems to take a sudden turn for the worse, it is most likely due to another illness.  Once that illness is treated, your loved one should return to their normal FTD state.

2.  Even though someone with FTD doesn't show empathy and love in the same way they used to, it doesn't mean they don't benefit from signs of affection...a hug or kiss or "I love you."  Just because they may not be able to outwardly initiate those signs doesn't mean they don't experience the feelings and love the affection.

I also wanted to share a number of links to articles and videos that I've come across recently.  It is really great that these journalists are writing about FTD.  It is getting the word out about this terminal disease.

Forbes article: Inside The Mind Of Frontotemporal Degeneration: A Patient's Story - By: Alice G. Walton
(Featuring Howard Glick)
http://www.forbes.com/sites/alicegwalton/2012/05/09/inside-the-mind-of-frontotemporal-degeneration-a-patients-story/

NY Times article: When illness makes a spouse a stranger - By: Denise Grady
http://www.msnbc.msn.com/id/47314169/ns/health-alzheimers_disease/t/nyt-when-illness-makes-spouse-stranger/?fb_ref=.T6dLFYvIAx8.like&fb_source=timeline

Forbes article: The Other Side of Frontotemporal Degeneration: Inside A Deteriorating Brain - By: Alice G. Walton
(This is kind of a follow up to the NY Times article
http://www.forbes.com/sites/alicegwalton/2012/05/09/the-other-side-of-frontotemporal-degeneration-inside-a-deteriorating-brain/

Gumbo Practice

In two weeks is the State Championship Fiddler's Frolics and BBQ Cookoff.  My family has been cooking in this competition since the beginning between my uncles and my dad, mom, sisters and now my husband and brothers-in-law and our various friends.  So a few years ago, my mom had a first place win in the Jackpot Gumbo Cookoff.  We've been trying to match her win ever since.  So I did take a stab at it last year with my mom's supervision.  She kept telling me that my roux wasn't dark enough, but I totally chickened out and made a blonde roux which made my gumbo beige and boring and bland.

This year I'm taking another stab at it.  I've been reading as much as I can about roux and okra and file and all things gumbo.  Here is my first attempt at roux.  It could probably be a little darker, but I didn't want to take a chance at it burning and then having to start all over.  I think it looks like milk chocolate which is one of the descriptions I read about.

I used a combination of bacon fat and vegetable oil.  Next time I think I am just going to go with straight vegetable oil.  I think I will get a cleaner and more consistent roux.

Next was the trinity...celery, onion and green bell pepper...I added it to the roux.

I cooked this together for about 10 minutes which softened the vegetables.

Then I added the stock.

I simmered this mixture together for about 30 minutes before adding my bay leaf, sausage and shrimp.  Cooked this together for about 15 minutes, removed the bay leaf and added salt, black pepper and cayenne pepper.  I decided that I didn't want to add the okra since the roux did a great job at thickening it.  I may buy a little file to sprinkle on top to make it more authentic.

And voila.  With a little rice, and some scallion for garnish, the taste was awesome.  I got two thumbs up from both James and Kiley.  I'm going to take a sample to my neighbor who is from Louisianna for one more little taste test.

My brain feels like mush...

So I know that my mom knows that she has FTD, but I don't know if she knows what that means. She does know that it is dimentia and that it is affecting her behavior. She just can't control it all the time. At one point this weekend, she said her brain felt like mush. At another point she asked Donna what her name was and then later said that her biggest fear was forgetting her kid's names. It is getting harder and harder for her to control her behavior and sometimes she just lets it all go.

I love my mother so much and wish I could have her back the way she was five years ago.

Howard's Brain

This is a really entertaining video recorded by an FTD patient to raise money and awareness about FTD. I hope you take a moment to watch it.

Howard's Brain
http://www.kickstarter.com/projects/thinkfilm/howards-brain?ref=live

To learn more about FTD and Howard see these sites:
National Institutes of Health: http://www.ninds.nih.gov/disorders/picks/picks.htm
The Association for Frontotemporal Degeneration: http://www.theaftd.org
Howard’s Blog: http://earlydementiasupport.blogspot.com/

Bill's Story...as told by his son.

An interesting video about a father and husband who has FTD. Bill Fehon was an avid bow hunter. His son is creating a documentary about his father's life. This video was taken at the annual bowhunter's meeting. There are some videos within this video of Bill Fehon and of his wife that show the disease in the early stages. The early stages can last many years. The final two stages go pretty quickly.

http://youtu.be/DItwiqApj-o

http://www.youtube.com/watch?v=DItwiqApj-o&feature=player_embedded

The two links above are just two different ways to get to the same video.