FTD: What about the Children?

* I run a private FTD Patient Support Group on Facebook.  The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard

Off we go into the New Year. The end of the year I tried changing my routine to somehow force myself into "book writing" mode. Seems like every year I change around my routines that work and wind up grinding to a halt. I just redecorated Starbucks and brought it back to pre-holiday Howard FTD comfort level.  Back in the captains chair and off in the right direction. No more running around going crazy trying to find a comfortable place and alter what works. Next time you read that I need to alter my routine to be more productive, please give me a swift kick n the buttocks or a baseball bat hit to the head. Knock some sense into me. Everything I'm doing is getting done in it's time. Yes, "All in good time, my pretty."

Seeing my kids was wonderful. I want to thank those of you that sent gift cards and cash. It helped tremendously and I'm deeply appreciative of the help. My kids are 15 and 20. They were 5 and 10 years old when I started showing symptoms. We often hear from spouses about the devastating changes that happen when FTD strikes, but our most important commodity is our children. How does FTD effect them and there lives? Nothing short of devastating. FTD is bad enough, but being misdiagnosed and drugged up out of my mind by a vacant medical community made things much, much worse. I've few memories from back then, probably better that way I'm told. I was hoping to film my kids for the documentary, "Howard's Brain" and have them discuss what it was like back then. At first they agreed, but then right before we were to film, they said no. To many painful memories that they didn't want to relive. Guess I was being insensitive in not asking that from the beginning. My daughter brought up how I ruined her Bat Mitzvah and how she didn't speak to me for a year. My son didn't even have one. My behavior was so bizarre and disturbing in my actions towards them and how off I was. Can't tell you how vacant I feel now missing them growing up and now sort of being an outsider. I know I'm not, but I'm distant and one week a year isn't enough to pull things together. Not even sure if frequency of visits would help this. I fight like hell to keep keep FTD symptoms at bay and overcome them with alternate actions, but there's only so much I can do. 

Asked them at the end of this trip if they noticed anything different about me since a year ago. They both agreed that I'm more emotionally detached. That's the main thing they noticed over last year.  I know it. I know it and it hurts like hell. Would love to write here a solution, an action or problem solver. Sometimes in life there are no answers or solutions. I can only hope to see my kids more in the future and become closer and have a further understanding. FTD sucks. My children also noticed I've more energy than last year. I explained to them because I no longer take Namenda/Memantine for FTD. The last 2 pills (Aricept/Namenda) the medical community recommended I take for FTD are now on medications to avoid with FTD list. Maybe someday the medical community will get it's shit together with FTD. Right now the medical community is on my "avoid" list. No question I'm doing better without there ,"No answer, pretend answers." Come out with a cure and I'll be first on line, otherwise don't call me, I'll call you.

AFTD is addressing the issue of kids with an FTD parent. AFTD will be launching a new website………..

AFTD Sharon Denny:

AFTD is developing and exciting new website for kids and teens who have a parent with FTD. We will begin to populate the site prior to its launch in Spring 2014. Children (ages 12 and under) are invited to submit a personal story, poem or work of are about their experience to be featured on the site. For more information email: kidsandteens@theaftd.org. (Submissions from teens with be requested soon.

AFTD also has the booklet available, "What about the Kids?" The full booklet is below and your can order it or quantities from AFTD.

"What About the Kids"

Will be blogging again soon. It's been a while and this is a new start. At this very moment I'm feeling tremendous pain of loss of family, loss of a life that has been decimated by FTD. 

I plan to articulate my life with FTD. Both here and in my book. I constantly read from caregivers and the medical community how FTD patients are acting, behaving and feeling. I intend to keep explaining what's in FTD patients heads.

We've a lot of work to do………………

Howard

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251