Howard’s Brain or A Day In the Life of a Man Living With Frontotemporal Dementia

I’ve never met Howard. I was “introduced” to Howard via a Facebook support group for kids whose parents have Frontotemporal dementia (Pick’s disease) or other early-onset dementias…. Howard has an interesting story to tell……. he actually knows he’s dying from Frontotemporal dementia. Howard’s mission is to tell his story and now he and others are working on a film to show what it’s like to live with this type of dementia. You can check out a clip below and, if you feel like it, donate some cash so he and his movie-making peeps can finally say CUT:

The skinny on Howard, his brain and the film:

Who’s Howard?

Howard Glick is a 53-year-old man currently living alone in New York City. Howard’s funny, outgoing, talkative and has had an interesting life.

If you saw him on the street, you might not notice him. But there is one thing that makes him different from most of us: Howard has a rare brain disease called Frontotemporal Degeneration, or FTD.

A disease that steals your soul

Never heard of FTD? Join the crowd. FTD is a form of dementia, but instead of attacking memory like Alzheimer’s, it affects the frontal lobes of the brain, the part that controls your behavior and emotions; your personality. Take away your frontal lobes, the “social brain” and the you that is “you” ceases to exist.

FTD typically starts younger and affects people in the “prime of their lives”. No matter what age you are diagnosed, FTD is irreversible, untreatable, and incurable.

It is What it is 

In 2010, I made a short film about four families struggling with this terrible disease. The film It is What It is was told from the perspective of a husband or wife caring for their spouse with FTD. Each of their stories was sad and heartbreaking but also some of the most powerful testaments to love that I have ever witnessed.

Still there was something missing. One of the effects of FTD is that it mutes the self-awareness of those afflicted with it. They lose the ability to make sense of and express what is happening to them. All too often, their voices are silent.

And then I met Howard.

Howard Glick, FTD

Howard is different: he knows he has FTD and he can describe what it’s like to live with the disease – from the inside. Howard is far from silent.

So last September, I gave him a video camera and asked him to record himself. Howard is funny, candid, introspective and articulate. You can get a sense of him and what he’s been through by watching the video above.

Like so many others with FTD, Howard was mis-diagnosed and suffered through six-and-a-half years of what he calls “absolute hell.” Once a successful businessman, Howard describes his current financial situation as “retro-economical.” He lives in a rent-controlled apartment in Washington Heights and gets by with a little help from his friends, a check from Social Security, and 63 cents a day in food stamps.

But Howard is a remarkable fighter. While he struggles to keep his own symptoms in check, he also started a blog and a FaceBook group to help others with FTD. He has online followers from around the world. He writes candidly about his own life and he speaks with a special wisdom of those benighted by FTD.

Howard’s Brain

The challenge facing Howard now — and for telling his story — is that it’s going to take a while to write the ending. There is little that is typical about the progression of FTD so Howard lives in uncharted territory.

So we’ve set our sights on the horizon. We have about 100 hours of footage so far and Howard continues to film his daily life. My plan is to send a small crew to shoot what Howard cannot and to interview those closest to him. All the funds raised through this Kickstarter project will be used to pay for that shooting and to begin editing.

Howard’s Brain is the first-person account of one man’s reach for a life that is slowly extending beyond his grasp. I believe this film is a unique opportunity to raise the voice of FTD. Through Howard’s story we hope to spread awareness about FTD and support the goal of ultimately finding a cure. We hope you’ll want to help us with that mission. Thanks for your support.

One comment

  1. I have FTD. I have been told it is Bi Polar. My GP understands and told me of the MRI report.

    Sadly I have spent 3 years of my life with Neurologists who claim I’m in severe denile of my “Mental Illness.

    I am similar to Howard wishing to only be heard. I don’t want this life or should I say, existence to go to my grave when my story could be an awareness, education or study for future success and or support to families, patients, and Specialists. I don’t want my life to be a waste or burden to anyone.

    There are many things I can do or share for the benefit of the future.

    I’m on my own, isolated yet surrounded by people who find it easier to ignore or exknowledge my differces.

    I would do anything to tell my story, filled with with the effects of this horrible disease, as most of us are isolated, ignored or ordered to live a life controlled by everyone except by us! Loosing all freedom and independence for the benefit of others.

    I’m no different than a person diagnosed with Cancer, MS or other condition. But because of the few numbers of of us, we are aware of no interest or value of research to the small unknown population of those dealing with FTD, every second of our lives. A while ago, Cancer, AIDS, Eboli, was not a common word as it is today. However today there is research, treatments and a chance of hope, where we FTD ers have none.

    I want to be heard, seen and not be shunned for the benefit of others uncomfortable to be around us.

    I have much to say to anyone willing to listen and support this deadly disgusting disease.

    We are misunderstood, misdiagnosed and mistreated for being who we are.

    I think it’s time to include us, be heard, and support us instead of the loneliest of isolation. We or should I say I, am beyond the point of fearing tomorrow. No income yet the phoe calls constantly remind me I’m in dept and owe and owe.

    Who will hirer anyone like me, or support or welcome us in education to obtain a chance for the a future, when there are no jobs in the area except the nasty orders of people getting a job and stop our determination of being recognized.

    I admire Howard Glick and perhaps one day I maybe a part of being public for FTD as well.

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