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.
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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

Valentines Day and FTD

One of the roughest things that someone with FTD or Dementia can find themselves with is alone. Many people are used to it, but not me. I've been in many good relationships, but try dating with FTD. 

Of course I get very lonely and about 6 months ago a friend of mine I suggested I join a dating site, OkCupid. 

How is dating with FTD?

When you mention FTD/Dementia, you might as well go on a date with a vampire and instead of bringing a pint of blood, you bring garlic and crosses.

 I went on approximately 10 dates and never made it to a 2nd date. The dates went from bad to worse. I met most at cafes or Starbucks in Manhattan. Most of the women were really nice. I was excited at the beginning of each date and usually wound up less than excited on the way home. 

Of course I don't lie and FTD/ Dementia does come up on the first date sooner or later. 

Some highlights:

A math professor who told me after 2 minutes that she was seeing someone on a regular basis, but just used OkCupid to meet new people. She decided to have brunch and ran up the bill.

An Emmy award winning comedian who I met at Starbucks. We talked for about 40 minutes and all of a sudden just got up and walked out. Guess the joke was on me. 

A lawyer from Brooklyn who somehow did a background check on me knowing only my first name. Right before our first date she all of sudden knew about FTD, Forbes article, Blog, Israeli army, etc. We never made it to the 1st date. 

A graphic artist who I met at the International Photograph Museum. She was 5 minutes late and called me on my cell phone. Turned out I was looking right at her 10 feet away. She barely looked like the person her photograph represented. Easily 10 years older than her picture. We spent 35 minutes in uncomfortable silence walking through the museum. Yes, me silent. You know it was bad.

This was in November and my friend Marc was in from Seattle helping me with the film. I've known Marc since I was 5 years old and he's always been straight with me. I asked him if he thought I might ever have another woman in my life. A couple of my challenges are:

53 years old

FTD 

Cancer

home heath aide

$1.45 a day in food stamps

Marc told me I didn't have much of a chance. 

I brought the situation up at "Riverstone Memory Club." Many of members were also single and lonely.

I announced to the group my intention of starting my own dating service. You've heard of E-Harmony, 

J-Date and Match.com

My dating service will be called D-Date or Dementia Date. 

It will be a dating service for people suffering from one of the Dementias or Memory Loss. You can date the same person again even if it doesn't work out after 3 months because chances are you won't remember them anyway.  All your dates will be like exciting first dates. 

If the date doesn't work out. Forget about it.

Well, it's been three months since that insightful conversation with Marc. Indeed my situation has changed. Now my challenges are:


54 years old
FTD 
Cancer
Heart Disease
$.63 cents a day in food stamps

ON THIS VALENTINE'S DAY, I NOW HAVE AN INTELLIGENT, BEAUTIFUL NEW WOMAN IN MY LIFE AND WE'VE STARTED AN EXCITING NEW RELATIONSHIP. LIFE IS ABSOLUTELY WONDERFUL. EACH NIGHT WHEN I GO TO SLEEP, I CAN'T WAIT TO WAKE AND FACE THE NEW DAY AS WELL AS SEE THE NEW WOMAN IN MY LIFE.

HAPPY VALENTINES DAY TO ALL!!! 

FTD - Drugged Up

First of all, for those out there with FTD, there is a private Facebook FTD Patient Support Group you can join. It has 36 members and is a positive, informative group. Please contact me for details of scroll down to the article which gives instructions.
Howard

This is directly off my medical charts. I'm probably forgetting a few.

wellbutin

seroquel

zelapar

selegiline patch

ambien

lunesta

hydroxicine

depakote

neurontine

lithium

ativan

lamictal

EMSAM patch

risperidone

xanax

doxepin

zoloft

lexapro

prozac

klonopin

lamotrigine

Halcion


The above medications are anti-psychotics, anti-anxiety, antidepressant and sleep medications.


These are the meds I was on while on pharmaceutical cocktails for 6+ years of being incorrectly diagnosed as bipolar. I say incorrectly and not misdiagnosed because I have a lot of respect for most of the Doctors and I know they tried there best with the information they had.


FTD mimics bipolar. Over 50% of FTD cases are misdiagnosed as a mental illness.


There are no FDA approved medications for FTD. FTD is untreatable, unstoppable and incurable.


I have been off all the above listed medications since June 2010 when I was told the PET scan and neuropsych testing showed I had FTD. 


Friends and support groups are the best therapy to try and manage the symptoms of FTD. Even though I'm doing much better with my mood improved and me functioning much better. FTD continually takes me by surprise by showing it's ugly face and tries to destroy anything I have left in life.


The medical community and most caregivers agree that the best way to handle those with FTD is to drug them up and make them almost incoherent. That makes life easier for everyone. What does a caregiver do for a loved one that is now different from the person they've known for years. They don't want to abandon them, but can barely deal will them. Everyones life gets ruined by FTD and it's just easier in many cases to drug the person, than try to help them be themselves to somehow be the person they were. The more you drug people up with FTD, the less they use there brain and the faster and further they slip. 


There are many medical theories to FTD'ers and the use of their brain. One theory is how the brains with FTD function at a higher level earlier on, even before symptoms show because the brain knows it's in trouble. I'm told frequently how high functioning I am, even though I drive everyone crazy.


Then there's a theory that since part of the brain is being systematically destroyed, other parts or the brain aggressively make up for it.


I'll let the scholars argue to which if either of these theories are correct. Me, I'll just say there are many with FTD that are wasting away on drugs because they don't have the correct support to help them and there are absolutely no programs or support groups targeting those with FTD. 


I started my own on-line FTD Patient Support Group. It now has 36 members and is a large success. Yet besides AFTD, I cannot find anyone to help. I'm told there to many legal ramifications or unknowns. In other words, plenty of excuses, no actions. Therefore there many with FTD out there that are getting no support. Caregivers and loved ones get support, but not patients. The disease is to complicated. 


I can only hope someone has the balls out there to do the right thing because FTD patients are out there and need help.


I fight to manage the symptoms every moment of every day. I have no caregiver and can't ever see there being one. It's virtually impossible for just about anyone to put with me because of the behaviors that constantly manifest from FTD.


I'm in a losing battle, but am happy to fight it. 


I can only judge what I'm doing with my life and shouldn't judge others. Yet, I know now of others that are suffering and that can coexist without being drugged up.


Me, my life is sheer hell a good deal of the time but so what. I've incredible moments of happiness and sense of accomplishment from things I'm doing.


I do have to live constantly on the edge because the long term disability company UNUM, a 6 billion dollar company who has been under government investigation and fined for not paying claims has decided not to pay my claim.


Unum knows I have FTD. The medical evidence that I had it when I was under there policy is indisputable. I know plenty of others with FTD that have Unum policies, that are getting there disability. Yet, it's simple corporate greed and keeping up profits. I have a lawyer and a case will take years. Shame on Unum because they know I don't have years. We're not talking about a huge amount of money, just enough for me to get the necessary medical care and see my kids more than once a year.


It would be nice to plan for a long term facility and not scrapped off my apartment floor some day.


If anyone out there is with HR for any firm. I would investigate Unum closer before going with them as your long term disability carrier. You'll find they have many skeletons in there closet and routinely screw people who have there policies.


I am going to be starting a large campaign against Unum to make sure people are aware of what a despicable company there are.


All in all, I will not take drugs and I will keep fighting to educate, further public awareness and help those with FTD. This is what I've dedicated my life to.


Howard

FTD - Pills and Memory Loss

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In my previous blog there were some inaccuracies in the piece I wrote about my Chiropractor. I apologize for the errors and it's been rewritten.

One of my doctors and friends, Laurie Mullen, a chiropractor, has worked on me with Sacro Occipital Technique (SOT). Laurie uses her hands to evaluate, release and balance muscle and skeletal restrictions which affect the sacral-cranial system. She gently feels various locations of the body to find restrictions of motion or misalignment. Laurie then uses gentle chiropractic adjusting, stretching, and pressure to release restrictions in any joints, tissues or cranial bones influencing the sacral-cranial system.

This balances the structures surrounding the brain and boosts the body's ability to self correct. I think this is an invaluable tool for those with neurological impairments.

This alternative medicine works. Laurie has been working on me weekly since I've been diagnosed with FTD and there is no question that I leave her office feeling clearer with the ability to think better. There is no question that Laurie's work and friendship have been a clear contributor to me functioning so well with FTD. This is the only physical treatment that has helped me with FTD that I know consistently works .

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Thank you all for your well wishes. I've recovered and I'm back to living life. Of course there are some hiccups.


Yesterday, I was on the way to Steve's for a Superbowl party my cell phone went off reminding me to take my Namenda. Instantaneous panic ensued, followed by relief knowing that I keep extra pills in my backpack which I always have with me. I quickly took a pill before I forgot. I was at the bus stop filmng at the time and I hope the camera caught my immediate panic of the cell phone alarm going off and my first thought I had to rush home and then relief to realize my backup plan was working and I had extra pills with me in my backpack. Late last night when I got home and turned on my computer, my computer started flashing "Namenda"  when it when on. I smiled. My other back up was in place. Luckily, I remembered taking the Namenda at the bus stop. 


Other times, I can't remember if I indeed took it or didn't. Even though I remember remembering I forgot, I'm still not sure if I remembered to take the pill, when I remembered I forgot to take it.


Anyone with real memory loss knows the hurt and frustration over hearing from family and friends, "Oh yeah, I forget things to". It's a little different when you need to set up multiple alarms, notes, etc. to remember to take pills and even with all the backups you set up, you still forget without distraction in that brief moment after it goes off. The worry and fear about cooking and forgetting something's on the stovetop gets very real when you set up multiple timers and all of a sudden the smoke alarms is going off because you forget when the timers go off to go to the stove. 


I used to be pissed off that I have Dementia and it's against NYC law to buy "hot" food with Food Stamps, but now since they lowered my food stamp allowance to $.63 cents a day I don't have to worry about it anymore. 


The fear of having these memory issues and being institutionalized because you are a danger to yourself or others is very real. I write this blog at my own peril of Social Services knocking at my door because the messages I need to get across are very real to those suffering from FTD/memory loss and the public needs to be educated.


Those with FTD usually have memory issues that get worse as time goes on. I've had a combination of long term and short term memory problems. I never take them seriously, I try not to drive myself crazy. That is, till now.


After my heart surgery, the surgeon spoke to me of the importance of not forgetting Plavix and Aspirin each day or I could have a blood clot. That could have fatal consequences. Dr. Weiss was very concerned that I'd forget. He read my blog and knows I struggle with memory issues. I assured him I have protective measures set up so I don't forget. I have pill boxes with days of the week listed, 2 alarms that go off on my cell phone and computer that I stated earlier. 


In a perfect world that be sufficient, but not FTD world. Not only is it a real concern forgetting to take my pills, there is another situation of me forgetting to renew my prescriptions. 


I have 3 sets of meds to take and need to refill all three at different times every 30 days. Plus I need to make sure the refills are up to date or else they need to contact the doctors office and that could mean another couple of days. Of course this would only happen around a holiday which means not only would I be F'd, I would be in the ER begging for Plavix or worse. One of the reasons I've survived on my own with FTD is I'm always thinking three steps ahead. I decided to go to my community Pharmacy where they know me and my challenges.


This happened the day I left the hospital last week. I was on edge because a day earlier I had learned on the operating table I was having 3 stents placed and had a heart attack. As I said earlier, the surgeon, Dr. Weiss was very clear on the repercussions for forgetting this new med and aspirin.


I've been going to my local pharmacy for years and all the employees know me there. I'm always the same pain in the the ass. Like everywhere else they have a love me, hate me relationship. In all fairness I do joke around a lot, so sometimes people don't know whether I'm serious or kidding around. Two pharmacists were there and I explained I literally just came from the hospital and now had an additional 4 prescriptions for my heart. One of the pharmacists knows I have FTD,  has been to my blog and realizes that I have short term memory issues. The other knew I had something, but sees me a spirited young 50's guys. I explained about the surgery and my concern about running out of Plavix at an inopportune moment and if they could work with me on this one prescription by making sure it was getting renewed timely. I was just asking for a phone call or some way to keep track so I wouldn't run out, not a daily reminder. 


One of the pharmacists started started joking that I had no memory issues and a simple pill box would do. I tried to explain I had one and that's not the issue, but she kept jabbing away with jokes. I lost it telling her I'm barely keeping myself together and just asking for a little help and that this is a a serious situation and I guess I would have to find a different pharmacy. Of course, vulgarity was permissible at the time and I used a variety of choice expletives. 


The other pharmacist who I know very well quickly came down from her perch and took charge of the situation. We got it resolved over the next day or so with the pharmacy going to help me build up a reserve of a few extra pills in case everything that can go wrong, does go wrong.


I don't have that luxury of having a service contact me or help me because my long term disability company, Unum has decided to screw me and not give me my disability for FTD which was covered under my plan while I was working. I'm doing the best I can, but if something does happen to me I hope someone goes after this disgraceful greedy company because they are keeping me from resources that are clearly helping keep me alive.


This morning I noticed that the pills from Sunday were still in the pill box. Obviously I screwed up. I also noticed there was one baby aspirin in two empty slots. Don't know what happened and I'm not going to worry about it. 


This is just a moment in the life of an FTD'er who has a revolving door of serious issues every day that needs to be addressed. As each challenge happens, I'll address it to the best of my ability. Just can't help feeling that I'm starting to live on borrowed time. 


It's a lovely day in NYC, I'm at Starbucks and life goes on.


Howard 

FTD - Suicide

Hi Everyone,

I started writing this a few weeks ago before having my heart surgery.


The topics of euthanasia and suicide have been brought up many times in many forums and groups. I have answered this before and have decided to post this to the public. 


Hopefully sharing this will give others a more in depth understanding of life with FTD. Most of us with FTD have been misdiagnosed for years before getting a correct diagnosis. There are those out there that never find out. 

I've been in and out of Columbia Presbyterian Hospital the last couple of days. Continuous EKG's and blood work. Looks like I have some heart issues. They want to monitor it till they get on top of it or admit me.

In the last year it's been FTD and Cancer. Might as well add bit of a heart problem and some leprosy to the mix.

I don’t believe there is a person alive with FTD or misdiagnosed like I've been that hasn't thought of suicide or euthanasia.

In May 2010 I went to Arlington Cemetery to visit the memorial of the 220 Marines that died in the barracks bombing in Beirut on October 23,1983. Although I was in the Israeli Army and not the US Marines, I spent time in Lebanon while in the IDF and had close unrelated military ties. I needed my own sense of closure. 

I left the cemetery devastated after reading out loud the names of all the marines who died that day. I did have a roundtrip ticket to return to NYC. 


My mindset was one of hopelessness. 


I was on 17 powerful antipsychotic, antidepressant, anti anxiety  pills a day for being what was thought bipolar. I had been through 50+ ECT’s and the VNS device implanted in my chest. Nothing worked. The love of my life was no longer my partner, but my babysitter. I was bankrupt, depressed and didn’t know what was wrong and why nothing would fix me. I was having suicidal thoughts for a long time now.

I was misdiagnosed for 6+ years as bipolar. I gave up and went back to the hotel room. Drank some tequila and took Ativan, Ambien as well as other pills and passed out.  I was in a coma for 3 days and hospitalized for 7 weeks. 

During those 7 weeks I lost the woman I loved, my stepfather of 37 years I loved died, I found out I wasn't bipolar and actually had FTD. They titrated me off the 17 pills I was on a day, told me I had a terminal illness and to make my end of life plans. I went home alone to a half empty apartment, the love of my life gone, broke and with a terminal illness. Then they gave me a medication for FTD which was known to have bad side effects for those with FTD. Another medical mistake. Aricept had me walking out into the streets of New York City in a haze. Cab drivers aim for you in NYC. I thought I was about to die. My neurologist found out after 4 months the hospital made a mistake. In those 4 months I also found out I had prostate cancer and had my prostate removed.

I haven’t had any suicidal thoughts since leaving the hospital after being diagnosed with FTD in June 2010. 

It's a year and a half later now and my FTD is slowly progressing. I have no caregiver, I don't take any meds except Namenda, I'm broke on 63 cents a day on food stamps, cannot sustain myself financially and need help each month from charitable friends to survive. It's also very real that I have a very dark future on the horizon. I also found out a week ago that Unum, the long term disability company will ignore the overwhelming evidence put forth by my neurologist that I’ve been disabled with what we know now is FTD. They refuse to reinstate my disability. I haven’t been on one pill for over a year and a half or seen a psychiatrist once for being bipolar because I’m not. I’ve had proper treatment and therapy to learn to live and deal with FTD. 


I struggle every moment of every day at trying to control the symptoms of FTD. 


Maybe Unum thinks I forgot how to be bipolar. Unum has a history of not paying disabled people and have been sanctioned by the US government for it.

Have I given up? No way. I'm back and kicking ass until my last dying breathe. I have fought and clawed my way back to be able to function in society. 

I'll be in my NYC apt till they peel me out. 

I now have a blog on FTD which is surpassed 10,000 visitors since I started it in July and have people constantly contacting me from around the world. I was featured in Forbes in November and have been in numerous publications worldwide. There making a documentary about me for AFTD with 90+ hours having been filmed. HBO is now interested in seeing footage for a documentary. I belong to groups and forums around  the world and work relentlessly to educate and further public awareness of FTD. I receive  and respond to over a hundred comments and letters every week. 

Three weeks ago I started the first FTD Patient Support Group. There's now 34 from 7 countries. I just launched a 3x a week live chat. The members pre-empted me by starting it last week and it's on and off now 24 hours a day.

There isn't a moment of every day that I don't fight to manage the symptoms of FTD. Yet I've managed to find happiness and purpose. My doctors and my support group Riverstone Memory Club are always there for me. I have the best support systems and friends in the world. My friends are there through thick and thin. Putting up with my FTDness and not giving me an inch of slack. They constantly keep me on my toes and make sure functioning. I work hard to keep it that way and in the world of FTD you are constantly doing everything humanly possible to alienate yourself.

One of my doctors and friends, Laurie Mullen, a chiropractor, has worked on me with Sacro Occipital Technique (SOT). Laurie uses her hands to evaluate, release and balance muscle and skeletal restrictions which affect the sacral-cranial system. She gently feels various locations of the body to find restrictions of motion or misalignment. Laurie then uses gentle chiropractic adjusting, stretching, and pressure to release restrictions in any joints, tissues or cranial bones influencing the sacral-cranial system.

This balances the structures surrounding the brain and boosts the body's ability to self correct. I think this is an invaluable tool for those with neurological impairments.

This alternative medicine works. Laurie has been working on me weekly since I've been diagnosed with FTD and there is no question that I leave her office feeling clearer with the ability to think better. There is no question that Laurie's work and friendship have been a clear contributor to me functioning so well with FTD. This is the only physical treatment that has helped me with FTD that I know consistently works .

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Birth is a terminal illness. FTD is an obstacle on the road of life. FTD is hell for everyone. My teenage kids only know dad being sick all there lives. They also know that dad gets out of bed tirelessly every day and kicks ass. 

Yes, I did try suicide and now the spirit of life has taken over. I don't take a moment of any day for granted. I will never recommend suicide or euthanasia to anyone. I would never be that selfish again towards my children and loved ones.

I'm facing a very uncertain future but I will not live my life in fear. I'm slowly losing my mind and my grasp on life is slipping away. FTD is untreatable, unstoppable and incurable. I will fight and claw till my very last breathe is gone. 

That's my response to those considering euthanasia or suicide for any reason. 

I’m now on the way to be admitted to Columbia Presbyterian Hospital for heart problems. My cardiologist is Jacques Merab. I have faith in him.

Hopefully I’ll be back at Starbucks writing and making the most of life soon.


Snapping back to today February 1, 2012. I am back at Starbucks. My surgery and 3 stents were placed successfully. I am happy and with purpose. My mindset and positive attitude are set and I will continue this wonderful life I'm living.


Thanks everyone out there that have been helping me through this amazing journey. I truly love you all.


Howard