Not a F___ing Word

Last week I flew for the first time in years and I decided I needed a strategy for dealing with airport security.

TSA and FTD are a natural clash. Of course it has nothing to do with the fact that they use the logic of a horseshoe trader and were tested and verified for their lack of common sense. It’s the FTD’ers responding to anything said with our brutal honesty with cavalier attitude which gets us quickly into trouble.

FTD’ers at a certain stage cannot keep their mouths shut.  It’s called incessant talking or nonstop chattering. I call it blabbering. My girlfriend turned to me a few weeks ago after a minor supermarket altercation and said, “I die a thousand deaths every time you open your mouth”. I’m excellent at getting myself quickly into trouble and equally adept at quickly stabilizing situations.

I decided to devise a strategy to keep me out of trouble with the TSA, since I’ve already had past issues. 

I came up with a mantra that I would keep repeating to myself.

(NAFW) - "Not a F___ing  Word”

No matter what happened I would continue to repeat this mantra to myself and hopefully stay out of trouble.

I arrived at LaGuardia at 6:45am Easter Day.  It was dead quiet with no line. I went directly to the ID checker and handed him the boarding pass and drivers license (NAFW). Made it.

Next stop conveyer belt and TSA gropers. I stripped down and placed everything on the belt. Then I entered the revolving door Xray machine (NAFW).  Made it. My stuff came though the other side. I had full toothpaste and deodorant etc. with me and fully expected them to be confiscated (NAFW). My toiletries made it without incident. My laptop wasn’t so lucky. TSA guy told me that my laptop needed to be run through separately. I nodded and smile (NAFW). TSA guy then took out my apple laptop, turned it upside down and dropped upside down 4-5 inches into a plastic bin (NAFW). I could barely contain myself, but made it.

The return flight didn’t go so smooth.

I was on the conveyer belt line when a flight crew politely asked to cut in front of me. (Of course) I told them. I had a half finished bottle of water in my bin, which I intended to fill up at the water fountain if it made it through security. I expected I had a 50-50 chance it wouldn’t be confiscated. I was secure with my mantra (NAFW). The flight attendant ahead of me had a partially finished bottle as well.  Her bottle went through unscathed; my bottles fate was to the derelict bin (NA__). I immediately said to TSA guy, “Why wasn’t her bottle confiscated?” His retort, “She’s a flight attendant”.

My FTD mind went right into action. Didn’t a pilot recently have a total breakdown and had to be removed from the aircraft restrained on a stretcher, as well as a flight attendant going into a lunatic rage before exiting through the emergency ramp.

(Not a F___ing Word)

I left quietly. No one except a fellow FTD’er would have any idea of the restraint it took to keep my mouth shut.

Howard

Kickstarter Final Numbers

Hi Everyone,

Final Kickstarter fundraiser numbers for "Howard's Brain". The goal was $20,000 and $23,117 was raised.

This was a total success. Thank you everyone for your global effort. Your hard work and donations made this a reality. This film will increase public awareness of FTD and help increase funds for an eventual cure.

Excuse me now while I leave Starbucks. I'm going home and passing out.

Love to all,

Howard

The Fat Lady's Singing

LAST DAY TO DONATE

Click link to see Trailer 

http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

The Fat Lady's Singing

I want to thank everyone for there efforts. At 11:55pm we crossed the over $20,000. 

This was done with a global community effort. There were separate groups online all working furiously trying to get donations. The people working together have 

There was of flurry cyberspace activity.

Hawaii, Israel, California, Mexico, Florida, Australia, Canada, England, New York and many other places were communicating over the internet.

Two people I know, one I haven't seen or spoken since the 70's, the other I was close with in the 80's were miles away from each other in distant state communicating and combining efforts. It was never discussed that either of them even personally knew me. The only thing discussed was different efforts to raise funds attain our goal and fight FTD.

I need to introduce those two.

One group had about 20 people from multiple countries planning, bantering, posting, tweeting, emailing and sending smoke signals.


When we crossed the 20k plateau, I started getting messages from people like the following,"Great, I can finally go to sleep".

Jennifer from "Dementia Today" tweeted over 700 
people and published an incredible article.
Please read
Howard's Brain
http://www.dementiatoday.com/?p=23590
Today is the final day to donate.
Thank you for allowing me to continue the fight against FTD through film.

Howard 

2 days left

LESS THAN 2 DAYS LEFT

Click link to see Trailer and donate!

http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

We reached $20,000 in pledged donations last night. 
I want to thank everyone for there donations. 
I appreciate the hard work that many of you put into networking,which got us over the edge. 


This film might be starring me, but it's really about the patients, caregivers, relatives, friends and all those devastated by FTD.


The mission of "Howard's Brain" film project is clear. Further public awareness and move us forward towards a cure. The Kickstarter fundraiser will be collecting donations for another 2 days. Pledge gifts such as "Special Thanks" in the films credits or other pledge gifts we be available till then. 


  
Thank you again,

Howard

FTD Blog Reaches 15,000 Visitors

click link to see trailer and donate!

http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

Please donate to "Howard's Brain" and help us further public awareness of FTD. The project will help with raising funds toward an eventual cure.

Special Thanks to AFTD for there generous donation.

*$50 donation receives "special thanks" in the films credits.

----------------------------------------------

My FTD Support Blog crossed over 15,000 visitors. 

Thank you so much for your support.

The blog is my base of operations. I started this venture 8 months ago. I remember celebrating after reaching 100 people. 

I started the blog to help those with FTD, as well as a way of saying thank you to the many people that've helped get me back on my feet. 

Since starting the blog I've also been involved in a number of other projects in the world of FTD. Some have been successful and others not.

The "Howard's Brain" film project has filmed over 100 hours and is in the production stage.  This documentary will not only further public awareness of FTD, but will give the medical community footage of someone with FTD going from one stage to the next. This will hopefully help in the treatment of others. I have dedicated my life to fighting FTD and am committed to filming as long as possible.

The other project I am proud of is the FTD Patient Support group. This private group is now up to 36 members. I started this group so there would be a comfortable place for people with FTD to go, as well as a good resource for accurate information. Little did I know when I started it, how much that group would be helping me. I am honored to be a member of the group, for the members are the bravest and most spirited people I've ever met. 


Though I like to try ignore the fact that my sidekick FTD is hanging out, FTD unfortunately hasn't been ignoring me. I've been finding it more difficult to function.


As many of you know, I don't have nor want a caregiver. The closest thing I have to a caregiver is AFTD, particularly Sharon Denny. AFTD and Sharon are there for me 7 days a week. 


AFTD is not only the worlds leading resource for accurate information on FTD, but there staff goes way out of there way for each person that contacts them. There more than just a nonprofit, there a source of comfort and backbone to many.


People write to me concerned of my future plans for long term care. There's not a lot of planning that can be done when your on public assistance and 63 cents a day in food stamps. I am comforted to know I have AFTD and NYC Riverstone (Memory Club) to help me in that transition. 

Howard

FTD - Cognitive Skill Decline and "Howard's Brain" update

click link to see trailer and donate! http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain" I want to thank all of of those who've donated  to "Howard's Brain". As I've said, This film might be starring me, but it's really about all the patients, families, caregivers and lives that have been devastated by FTD. We've 15 days left for taking donations.  We've reached over 50% of our goal on the way to $20,000. Special Thanks to AFTD for there generous donation. Please donate to "Howard's Brain" and get us closer to the eradication of FTD. *$50 donation receives "special thanks" in the films credits. -------------------------------------------------------- Project Update #3: Half Full Joe Becker

Posted by thinkfilm

I have scotch glass with the words "Optimista or Pessimista" inscribed above and below a line that marks the shot level.  Depending how I pour that day may say something about my mood. It's a perspective thing, isn't it: Do I see the glass as half empty or half full?  Well, this past week, our Kickstarter campaign was all about that perspective.  Actually, let me re-phrase that: Last Thursday, you -- all of you very generous people-- pushed us past the half-way mark to our goal funding Howard's Brain.  Thursday night, I raised my glass to all you optimists out there. It's quite an achievement for only 12 days and I just wanted to take a moment to say thank you to everyone who's contributed to and believed in Howard's Brain so far. I've never told him this but I think Howard is an optimist by nature -- but a fragile one.  Of course, Howard's dealing with a lot these day so he's entitled to a bit of nerves.  Personally, I'm comfortable living on the margin and I think I do some of my best work when the odds are running against me. All that said, I'm really looking forward to this next phase of our Kickstarter campaign.  As I said, we're half-way to our goal and there is no turning back.  I'm looking forward to the next week and what insight my scotch glass will reveal. Thank you all so very much.  Our glass is overflowing.

----------------------------------------------------

Hey Joe,

Nice Update. Guess your watching the footage and reading my emails. I have to admit you nailed it on the head with the "fragile optimist" remark. Most of my life I've been an optimist by nature and like you I thrive when my backs up against a wall. 

I've taken a few hits the last 8 years. On one hand I'm extremely satisfied at my accomplishments since I was diagnosed with FTD. On the other, things are getting tougher and the hits just keep on coming. My cognitive skills are declining. Basic computer skills and life skills seem to be getting tougher. I constantly need to relearn how to do things and need to reread the most basic documents. I've had incredible difficulties just posting and mailing. Basics. I wanted also to send out a short targeting letter today and couldn't write. This after redoing my mailing list database which also took days instead of hours.

My girlfriend was shocked last week that I no longer knew the basic cut and paste command. This after a technology career and having taught photoshop and pagemaker.

My doctor called to make an appointment earlier this week and I forgot where on my iPhone I put appts. Took me about 20 minutes to find it by pushing every app and then when I found it I had to figure out how to set the alert. When I went to my appointment,  my doctor Laurie Mullen came out to greet me. She told me I was exactly on time, except 2 days early.

I received a post from this guy who is taking care of his mother who has FTD. He wanted to play "devils advocate" with me as to why I function with FTD and no one else can. He also doesn't like my attitude :) He apologized after a few correspondences. I explained how I'm functioning and what I do. I also think I'm still at an early stage or early middle stage. I consider myself extremely lucky to where and how fast FTD is progressing. Hard to gage because there are plenty in my FTD Patient Support group that are functioning like me with the same "Never give up" attitude as me.

I'm so proud of the members of the FTD patient support group. 30+ people who don't whine and complain, but rather discuss nutrition, attitude and help support  each other to continue a productive life for as long as they can. I'm truly honored not only to be the founder of the group, but to be a member of it. A large portion of the film is dedicated to making those choices to live, not taking the easy road of giving up and letting life slip away. 

I really don't have any complaints. I am working harder now than I can ever remember and I'm fine with that.  It just takes so much to get through each day and I find I resent wasting any time these days. Morning is my Prime Time hours and I hate wasting a minute. I find myself resentful of wasting and time and appreciate what I have and how much I'm accomplishing.

I've a lot to be happy about. I've a lot on my plate, but so what. That's the main reason I'm functioning so well.

Howard

FTD and Kickstarter

click link to see trailer and donate!

http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

3/8/2012 12:46pm EST Just reached $10,000

Halfway There!!!

We're almost halfway to our goal of $20,000. We need your donation now to continue filming and finish the film "Howard's Brain".

A little about "Kickstarter", it's a site that allows people to discover, watch and contribute to fund a project. If the project meets its goals in a set period of time, the project is funded, if it doesn't meet the established threshold, the monies collected are returned to the donors. 

We hardly ever beseech each other to contribute to worthy causes yet, this one is so personal and close to home for most of you that I'm asking you to do that now.

This film might be starring me, but it's really about all the patients, families, caregivers and lives that have been devastated by FTD.

If your reading this there is good chance you are family member, caregiver, friend or someone in the health industry directly related to FTD. You know how devastating FTD is. The film is not only about devastation, it's about me finding purpose in life again and grasping at a life that is going away. There's no question my health is declining, but I'm choosing life and to make the most of it till the very end. 

Please watch the trailer and if you're moved, donate something towards the project.  

Maybe circulate the link to your communities, via e mail or post on FaceBook?  Get your community / family to support this project in this way. Joe Becker of Thinkfilm is the filmmaker, he's won Emmys for TV's "West Wing" and produced hundred's of other projects  including the short FTD caregiver film, "it is What it is". This is a real opportunity to get this film made.

"Howard's Brain" being made will shine a light on this awful disease and raise more funds for research and an eventual cure.

Donors who pledge $1+ will receive something special depending on the amount. $50 pledge will have there name listed in a "Special Thanks"  in the film credits. Please go to the site to see the all pledge gifts.

Don't let this opportunity slip away from us. 

We need your help now.
Thank you,

Howard Glick
http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

FTD - Me Wrong? "Howard's Brain" update

click link to see trailer and donate!

http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

We're on target being 40% funded toward's our goal of $20,000. We need your help to expose FTD. Please donate to make this film a reality.

Please help fund "Howard's Brain"

------------------------------------------------------------------------------------------------------------------

"Was there ever a time when you thought you were OK but there was something wrong with other people"?

Hi P,


All the time. I constantly think I'm right and others are wrong. Even when I'm proved wrong and know I'm wrong, I still don't understand why I'm wrong, even though I'm aware I'm wrong.


There have been many incidents where I know I'm 100% right. All of a sudden the person I'm with is so hurt and so in shock that I said what I said or could be thinking they way I'm thinking. I know I'm wrong, but have absolutely no idea why I'm wrong. I go to other friends or people and tell them what happened. I then get that sad look and grimace and I know I'm off.


I've accepted the fact that I have FTD, my brain is damaged and my thought process is corrupt. I can only try to minimize the effect I have on others. These days I've been forcing myself to slow down and be quieter when I'm in a serious conversation . I've been somewhat successful (I think). I'm still the incessant talking, no-stop chattering FTD'er most of the time, but I'm working on identifying those moments when I hurt people and screw up.  I'm trying to minimize the damage I do to other people.


Anyone that knows me, knows that I'm incredibly logical. It's just my judgement, reasoning and common sense that's all screwed up.


Living life this way is a nightmare. The movie, "Howard's Brain" shows how operating with a damaged brain can turn a normal situation to absolute chaos for me and those around me. 
I can only hope people keep donating so we can show the insidious face of FTD and work toward's getting a cure.


Every day FTD poses new challenges. I can only hope to minimize the pain to others and somehow keep my sanity, while I slowly losing my mind.


Howard

FTD Film - "Howard's Brain"

click link to see trailer and donate!
http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

Please help fund "Howard's Brain"

We've filmed over 100 hours of me living life with FTD. FTD is a life of horror, strangeness and adventures. It's a seesaw ride in which both FTD and me taking turns kicking each others asses.


I've lost and just about everything one values in life, yet I've battled back to give myself a life of purpose and happiness. 


It's a life of extremes with me either crying or laughing. People around me are either hysterical laughing or chasing me down the street. 


Please visit the link above or below to get the latest update of "Howard's Brain". You will see actual footage as well as a short commentary from seasoned filmmaker Joe Becker. Joe Becker's credits include the FTD short film, "It is What it is" and the TV show "West Wing".


This film is intended to educate and drive further public awareness of FTD. The greater public awareness, the more funding there will be towards research and an eventual cure. 

The "Howard's Brain" film project has been a labor of love. Many people have donated countless hours and financial resources. 


The HD Video camera equipment cost over $2,000 and was donated by Joe Becker. Joe also has spent plenty of resources on UPS, as well as the torture of watching my ugly mug on film for hours at a time. Marc Turkel, a lifelong friend flew to NYC from Seattle and spent 3 weeks filming me in November. Yesterday Marc donated $150.00 to help the get the film complete. Then there was Tamara, David, Lena, Stephanie and countless others that donated time and energy in helping me film. They all had the pleasure of me FTDing them and driving them crazy. 

I've dedicated my life to fighting FTD. I'm putting my heart and soul into this film, the FTD Support blog and the FTD Patient Support group.


The film discloses the most intimate moments of life with FTD. I openly talk about the nightmare that Tamara went through for 6+ years of misdiagnosis, first in a loving relationship and then as a caregiver running me to doctors offices, shock therapy and dealing with me in a medically induced fog. Her helpless feeling of dealing with doctors that kept changing diagnosis's and her knowing I wasn't bipolar. Her having to rush home because I was wandering the streets naked. The absolute hell her life turned into because of FTD. My story is similar to most FTD caregivers go through. 


Then my own feelings of hopelessness of a life turned upside down. A twenty year career gone, my children thinking I'm crazy, most friends and family disappearing, bankruptcy, medical hell including 17 pills a day,  50+ electric shock treatments, a VNS device implanted in my chest., countless shrinks, doctors and hospitals. Then the low point, a suicide attempt and 7 weeks of hospitalization where it was discovered I had FTD. Coming home to an empty apartment, broke and on food stamps, days of eating cheerios and water, horrible home health aides, cancer and horrible side effects to Aricept where I thought I was about to die from FTD. All the pain and hardship of how FTD rips lives apart is discussed in excruciating detail on film. Much of it in real time because the nightmare never really goes away.


Now I've fought and clawed my way back without medications to a life of purpose and happiness.


I've found the best and the brightest medical staff. I have real friends and a real close network of community support that helps me with everything from writing checks to making sure I have food at home. I belong to a support group, Riverstone Memory Club which helped get me of my feet and am in contact with AFTD 7 days a week who constantly reassures me not to worry because I am insane :-)


I'm in a constant battle each moment of the day trying to manage the symptoms. Where I'm somewhat successful, FTD rears it's ugly head every day with me always having to talk myself out of complicated situations.  FTD is progressing and my mind is slowly liquifying. It's apparent to all that know me well that my life is slipping away, but I'll continue to film and live.


I still date, party and continually grasp to have a life which is quickly disappearing.


Life goes on and I have a life. Not one of my choosing, but I'm making the most of it and I'm extremely proud of my accomplishments.


I've never asked for help from anyone. I'm now asking you to please go to the link below, watch the 8 minute film explaining what we're trying to accomplish and contribute anything you can. This way we can complete this project and fight FTD. 


Anyone who has been involved with this documentary is very excited. They've seen me talk and act without any inhibitions. I discuss and say absolutely anything on or off film and couldn't care less. There is absolutely no bullshit in me and I speak the truth and say what I will, regardless of the consequences. For me, I'm just living life. For the world looking in it's a real live look of what life is like with FTD.


"Howard's Brain" has an excellent shot at going mainstream and really making the public aware of this horrible disease. We are now in early production mode and need funding.

We need to raise minimum $20,000.00 before March 29th for the project to move forward. 


Please donate whatever you can. Even $5 will help spread the word about FTD. 


Please share this site, retweet or spread the word of this project by any means necessary.

I've been to FTD Hell, lets keep others from going there.

click here 

http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

Please help fund "Howard's Brain"

Thank you,
Howard

AFTD Education Conference 2012

The AFTD Education Conference is in Atlanta on April 27, 2012.

This is the first time patients as well as caregivers have been invited to the conference. This would be a good place for us to get educated on FTD as well as have our voice heard as to the needs of patients. 

Respite grants for travel are available. 

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

Here are the links to the Conference and the agenda

http://www.theaftd.org/about/atlanta-2012-education-conference-and-annual-meeting

http://www.theaftd.org/wp-content/uploads/2012/01/conf-flyer-2012.pdf

Howard

Lunch with a fellow FTD'er

It took 20 months, but I finally met someone else with FTD.
-------------------------------------------------------


One of my struggles with FTD is never having any contact with anyone else that suffers from FTD. Anyone who has FTD knows the isolation and day to day struggles we go through while slowly losing our minds.

Being alone with FTD is difficult. 

I struggle all the time to make my life easier. 

I will refine that last statement. 

I'm doing fine and work extremely hard on my mindset and attitude to keep it that way. 

Diana flew up to NYC from Tampa for the day. She had a doctors appointment and we were to meet for lunch. We hit it off from the moment we met. It became very clear that we were mirror images of ourselves.


Diana took me to an Italian restaurant for lunch. Okay, put two FTD'ers together for lunch and of course the police will be involved, we'll be eating food off other people plates and making a total scene.


Sorry, no such luck. These two FTD Patient Support Group members who have no caregivers, bust there butts to maintain a normal as possible life against all odds.


Diana is a wonderful person who was well accomplished as a Senior VP at Wells Fargo Investments. She is funny, direct and very FTD'ish. She has a no shit, take charge attitude like me. We both have traveled extensively and Diane has absolutely no plans on giving up on life and will live it to the end like me. She is heading early this summer to the Amazon for an adventurous vacation.Diana has a wonderful family history which extends back to the Mayflower.


We we're both self absorbed, listening but cutting each other off to get a word in. 


Amazing how we've similar day to day disabling struggles do. We talked about handling the basics in life and what a chore it's become. Basic checking account. I never had a chance to tell Diana my struggles, so here we go. I can't even balance a checkbook or write checks. This has gone on for years. Of course I don't have money to create many bills but of course there some. I'm lucky to have a Chase branch right next to me whose employees he me write checks when I need to pay bills. The employees of Chase are wonderful and are always willing to help me. There familiar with my FTD difficulties.


Diana was lucky enough to get a more recent diagnosis of FTD. A few years and clearer diagnostic tools make a world of difference in learning and making one's fate. She has serious health issues, but refuses to let that impede her life. Diana is a go getter and I can't tell you how refreshing it was to spend time with her.


We both even have Unum Long Term Disability plans. Fortunately for her, Diana didn't get misdiagnosed for years and Unum recognizes she has FTD and gives her benefits she's entitled to. My diagnosis is now crystal clear with plenty of medical facts backing it. We even have brain scans showing FTD progression over the years. UNUM is of course a "for profit" company that is screwing me because it's easy to turn a blind eye on someone whose sick with terminal illness that didn't have a clear diagnosis from the outset.


I will be doing addressing UNUM's disgusting track record denying legitimately disabled people there benefits as well as US government class action suits as soon as I get the go ahead from my lawyer.


Diana was so helpful trying to help me with future plans getting organized when I somehow start receiving funds from one of the many ventures I'm into. For me, it's difficult to see. Yesterday I was happy to see NY State was kind enough to give me $19 for the next month or 63 cents a day for food stamps. 


Diana was kind enough to offer me assistance numerous times. I told her what I tell everyone. I appreciate the offer. Thank you, but I want for nothing. My ex-partner Tamara has been helping me and others assist me in different ways. 


I live a very limited lifestyle, but so what. I have a life. It's a good life that I'm proud of. Is it one I would choose, no but it is what it is and I'll make the most of it.


People constantly ask me what are my future plans with regard to long term care. How can I even think about that when I'm barely making it financially. My answer is sooner of later they'll scrape me off my apartment floor. 


It was so nice to have lunch with Diana and know  we can count on each other for friendship. I'm looking forward to seeing her in June when she comes back to NYC. 

Diana & I know and get each other.

The FTD Patient Support Group is filled with people like Diana that will take the hand life has given them and will keep going. Many of us in the group are alone and are making it on sheer guts and determination. This isn't something new to us. This is how we've always lived our lives and will continue to carry on.


I look forward to meeting other members of the group. 


Howard