click link to see trailer and donate!
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 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.
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.
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.