Inappropriateness

You Are Not Alone!

* 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
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Really upset last night. Drank a bottle of $2.99 Trader Joe's wine. Hurt someone yesterday and kept having a vision of her face. Was at Starbucks in the afternoon for round 2. Sbux was empty with no line. One of the workers who I to friendly with had her back to me. A little while passed and I made an unnaturally loud Uh, huh. She turned around smiled. When she arrived at the register I told her I told her I shouldn't have called her because I was really enjoying looking at her ass. Can't put into words the hurt and shock on her face. Can't describe the visceral reaction this had on me. This is a young, early 20's elementary school teacher that worked Starbucks as a second job. Rare I use FTD Awareness cards, but pulled one out of my wallet. Explained FTD to her and she understood. Explained I'm sick and not aware what I'm saying is wrong and hurtful when I say it.

The revolving door of FTD symptoms stops when you die. Can't tell you the amount of nights in NYC I awoke, awoke crying. Affected by what I said during the day. Not knowing or recognizing the person saying disturbing things and acting inappropriately. No longer knowing the person that's me. Being awake can be a nightmare. I haven't gotten better since NYC. I'm losing my awareness and getting apathetic. Sitting here numb and in shock. Doing the best I can to live a happy, productive life while I'm losing me to FTD.

Was told by someone that I've just about stopped cursing both in public and in my writings. Yippee. Wasn't aware and couldn't care less. 

To die quickly from FTD or slowly from FTD? People tell me I'm lucky. Not feeling so lucky right now. 

Heading home now from Starbucks. 9:10am. My day is over. Living this life, writing this blog. Not sure what to think anymore. Just hoping this blog helps further awareness of FTD. That's what it's all about……...

Howard

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone modestly with no caregiver. 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

AFTD Education Conference 2014

The Annual AFTD Conference 
White Plains, NY 
(just outside NYC) on March 14, 2014.
(10am-6pm. AFTD social event following meeting)

Caregivers, medical personel as well as patients are invited to the conference. Last year we had about 12 patients attending. Many are signed up so far this year. 

Learn about the disease that has affected our lives and families. Learn new ways of coping, strategizing towards the future and find out the latest efforts towards a cure from the best FTD specializing medical minds in the country.

Since FTD is such a rare disease, this is an opportunity to see your not alone and learn different tecqniques of dealing with FTD. 

I will be co-hosting a session for those diagnosed with FTD: "Making a New Life After Being Diagnosed."

Besides being educated this will be an excellent conference to network and help set up new support groups for patients and caregivers.

I will be organizing a separate informal dinner for just patients and there companions Thursday March 13th at 7pm close to the hotel. We have 13 signed up for that dinner so far. Please email me at howardglickftd@gmail.com to add yourselves to the reservation.

Here are the links to the Conference and the agenda:

2014 AFTD North American Education Conference Information Link

Respite Grants for Travel

Conference Agenda

Shuttle from LaGuardia or JFK airports. 
Red Dot Shuttle 800-673-3368

Where:
Crowne Plaza - White Plains
66 Hale Avenue
White Plains, NY 10601
914-682-0050

You Are Not Alone!

* 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

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. 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

FTD Apathy

* 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

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Going into 2014 I need to realistically assess what I can accomplish. No time to mourn what skills I've lost and am losing. I've the desire to forge ahead, be productive and keep living an awesome life.

Doing my New Years 3 step FTD red sneaker dance. 3 restaurants, in/out of each within seconds. Then home to wine and 11pm bedtime.

Heart wrenching pain. My kids left a couple of weeks ago and I think about them constantly. I think how they said how emotionally distant I was. They also noticed and told me it was the biggest change they noticed in me from the previous year. I think about how I no longer love or have feeling like I used to. I have to dig deep and fight for love and feeling. It's still there and needs to be awakened. The quality and type is different, but I'm in touch when told. FTD and apathy. 

They visited for a week. I noticed a picture on Facebook of my friend Marc, hugging his son Juno and realized I kissed and hugged them once. That was days before at the airport when I picked them up. I immediately went and hugged and kissed both of them. Made it a priority to hug and kiss them frequently from that point on. Stuck it in my diminished brain routine, like going to Starbucks each morning. Yes, I felt the emotion and the love, but it doesn't come naturally. I need to somehow be made aware and work on it. 

Can't describe the crushing feeling of fighting and losing the FTD battle to keep feelings that make humans human. 

The picture of my friend Marc brought me back to reality. This insidious disease called FTD is stealing my life away. Even when with them I felt distant, but a kiss and hug brought back those feelings. They were younger when I started showing symptoms and was so out of control being on up to 17 pills a day and placed in a medically induced fog. Never got to teach him father/son things when he was younger. I sit here feeling like shit because I wanted to teach my son about basketball, baseball and football while he was during his visit. Even recorded it to teach him the rules. He's 15 now. I never did. Fell headfirst into the apathetic, lethargic way of FTD and it never got done. Spent to much time alone in my isolated FTD state while they were here. Have been thinking and dreaming of having him come for a father/son weekend of just sports. 
Can't afford to do it, can't afford not to. 

I've no food at home. We laughed how hunger got them out the door. I did explain to them in the month prior I was sick for almost a week. Stomach cramps and much bathroom time. Thought I had a stomach virus till I bought new milk for my Cheerios. It tasted different. The milk I was using was spoiled. Have to love FTD.

They've struggled through the train wreck of FTD and are making it. Been a rough ride. There mom deserves much of the credit. 

Yesterday was NFL Football playoff games. Have been bouncing around since I moved to Scottsdale, AZ trying to find a comfort zone. Most of the time I'm alone. People are okay in short doses. Can't keep track of conversations when I'm in a group. Get lost and hear all background noise and conversations around me. Sunday mornings I hang with the Starbucks weekend warriors. Always a couple of hours of fun and enlightening conversation from an assortment of characters. The leader of the band is a retired political/government crustacean who is opinionated, forthright and funny. Jeffrey and his wife are polar opposites and the perfect couple. Had an interesting head injury/dementia conversation with former NHL player Perry Anderson. Not being a hockey fan, I had to Google Perry who an "enforcer" in a long career. You couldn't meet a nicer, well spoken man. Have met many sports pro's since I moved here and have really been enlightened as to true cost our entertainment is to there health. I always leave the weekend encounters  like I just starred in a "Seinfeld" episode. I try to keep low key on the FTD thing. You know me, once I get started I don't stop. Trust me, not a day goes by where there aren't new victims to my FTD awareness crusade. 

I left Starbucks and went to 4 different places trying to figure out a Sunday football lunch. In the end went back to one of the places I already had been to and got a cheap Mexican Burrito. Need to get back on my salad and wings 7 day a week routine. Healthier, cheaper and keeps confusion out of my life. Sort of like Albert Einstein wearing the same black suit all the time, so he had more time to focus on the world at large. Went out late afternoon to watch the Seattle Seahawks football game at my "Wing" place called Stax. Was excited about the game. Placed my order as soon as I entered. Stax is quiet and not a sports bar. The noise level to me is deafening. Didn't even make it 10 minutes. The owner knows me/FTD. Asked him to make the order to go and waited outside in my Seahawks jersey.

Have been having many issues with blogging and other work because I've been having brain to keyboard difficulty. My girlfriend figured it out. FTD - The land of diminishing skills. We're figuring out options for moving forward.

Yes, Howard has a new girlfriend. Intelligent, beautiful, sassy, incredibly supportive and funny. She is in the medical field and quite familiar with FTD. Soon out of the gate we had a huge misunderstanding. It was an "FTD" thing. The next morning I received a text from Terri stating she's realizes she's an  
"FTD Girlfriend-In-Training". l almost peed myself.
More to follow…………..after all, you are an 
"FTD Audience-In-Training".

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

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