Wednesday, February 1, 2012

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 .

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.



  1. thanks for your wise words... you give great encouragement.
    Namaste, Peter

  2. Your story will be of much help for many out there. I only wish that the diagnosis of FTD was easier to be made and earlier would be great too. I can say that your finding out will at least give you the chance to plan your future. It will give you the chance to help your kids understand what you have and what to expect.

    Your honesty and openness is truly a gift to all.

    1. HI Ellen,
      Thank you for your comment. My kids do understand now. I'm glad it has worked out in that respect. As far as the future is concerned, unless I get my disability there is no plan except being taken away some day. Unum right now is trying to weasel out of paying me disability even though they know I have FTD.

  3. Hi Howard. We met at CPMC. It's a great hospital. I knowcDr Merab and he isca very good doctor and kind soul Youbr in good hands. Glad your surgery went well and you're back on your feetcand backbit Starbucks
    I had great problems with Unum also and after many many appeals for a differentvdisability was
    Also denied You pay your premiums but they don't want to pay your benefits. They should be investigated and shut down
    I think you should enlistvthe support of your local political reps in your fight with Unum.
    Good Luck and glad you r Back

    1. Thank you. Yes, Dr. Merab is an excellent doctor and Columbia Presb. is an excellent hospital. I'm preparing for a big battle with Unum. They are known for doing this and I intend to expose them for there crooked business practices.
      Thanks again and I hope your doing well.

  4. Howard,
    You are an inspiration. I applaud you in getting knowledge out regarding this insidious disease. Your courage is inspirational and comes with a huge cost. Continue to know you are valuable. Thank you!

    1. Thank you for your unending support. It's always nice to hear from you.

  5. So sorry to hear your story, my husband had Unum they were great paid to the end. He did pay into them through his employment for twenty some years. One stipulation on long term disability, you have to be receiving social security disability to collect. Maybe you are talking to the wrong people,they were wonderful to us. We did have to submit Dr. infor every two years and a form updating his situation. This is Unum Provident you are refering to.

    1. Hi Patricia,

      I'm glad you were lucky with Unum. I have SS and they just don't want to pay. They know I'm disabled, there just being unreasonable to keep profits up. There is no reason not to pay me except corporate greed. There is plenty of medical evidence now about my condition. There just choosing to ignore it.

  6. Howard,

    You never cease to amaze me. Thank you for sharing so much of your story. No wonder people want to make a documentary about you and FTD; your experience and story compel people to listen and reach out.

    I know Laura and her healing methods. You are certainly in good hands with her.

    Prayers for healing and love are sent your way, Howard. Blessings!


  7. me too, I will fight and claw till the last air I breathe!

    1. Your welcome to join the Facebook: FTD Patient Support Group I started. There are now 34 members and no pressure to participate. Today we have a live chat with Sharon Denny, Program Director of AFTD. The group is private and confidential. No guests or outsiders are allowed in. Feel free to email me at @ if you have questions or friend me on Facebook - Howard Glick - I'm under the Starbucks sign.


Note: Only a member of this blog may post a comment.