Friday, December 2, 2011

FTD - Distraught Over Being Unaware

I want to thank Alice Walton for the accurate depiction of my life with FTD. 

Forbes article
http://www.forbes.com/sites/alicegwalton/2011/11/17/brain-ventures-a-businessmans-battle-with-a-rare-neurological-disorder/

The article has received much attention and has helped educate and create further awareness of FTD -Frontotemporal Dementia.


Alice recently wrote an article Forbes featuring Steve Jobs shortly after his death. Three weeks later Howard Glick is featured in Forbes. I feel like I'm in good company.


Steve Jobs was worth over 6 billion dollars. Howard Glick has $104.79 in the bank. That's all I have to my name. I believe I might be one of the monetarily poorest businessman featured in Forbes.


I might be poor, but I have a life. It might not be the life anyone would've chosen, but it's mine and I'm making the best of it.


My story is very similar to many with FTD. I got wiped out financially having the wrong diagnosis for over 6 six years.


I had a high profile job in the technology sector I loved. I worked the same product since the 80's and consistently moved up the line. I was the first outside sales rep hired to sell the Riso product line in New York City. The technology was new and the manufacturer was an unheard of Japanese company. 


99.9% of you are now saying to yourselves, "Who is Riso". (you can google to find out)


The local distributorship was an hour and half away by car. I was to work out of my apartment. My largest competitor was a little known company called Xerox.


Jobs vs Microsoft - Glick vs Xerox
Jobs out of his garage and Glick out of his apartment.

Anyone who knows me knows I love having fun. Where I do have an ego, right now I'm having pleasure juxtaposing these analogies between Steve Jobs an obvious genius and me, an accomplished businessman and known schmuck.


I  engaged Xerox like David fighting Goliath. Year after year I pounded away at them in NYC taking over school district after school district, account after account. Whereas I was like a little pesky mosquito to be swatted and consistently missed, Xerox did frequently try and recruit me to join Team Xerox. Sorry, I was loyal to Riso.


My career track advanced from distributor to the manufacturer Riso out West and I was promoted till FTD infiltrated my life. 


In the last nine years I've managed to lose almost everything a person can lose in life. I rarely see my children out of Seattle, I couldn't afford to go to my own son's Bar Mitzvah which was just at a Shabbat service - no party, I lost my career, the woman I loved and all my money. I've never been sick in my life, never been on unemployment, never needed public assistance of any kind, never been arrested and always paid my taxes. 


I also had a long term disability plan in case I got sick. I lost that being incorrectly diagnosed as bipolar. I have a superb lawyer working with my neurologist trying to get it reinstated. Dementia is covered under my plan and a SPECT scan from 2006 suggested that degeneration had begun. A 2010 PET scan has now made it clear that it was FTD manifesting itself.


Like a boxer who is down and out on the canvas, beat up and nearly dead. I have risen for one last round. I will not be denied my last shot at life.


FTD is not a terminal illness. Birth is a terminal illness. 


Until the day we are dead we have a right and a responsibility to life itself. It is up to us to make the most of every moment of every day. I will continue to help educate and further public awareness through my blog, the documentary that is now being filmed, social media, through interviews and periodicals. I will not hesitate or stagnate. Whatever it takes to get the word out, I will do. My goals are set. I am on a mission and I will not be denied.


A few days ago a close friend of mine Janet texted me at 2:45am saying she couldn't sleep and wondering if I was up. Janet has a boyfriend. 
I was up doing my meditating, clearing my mind routine when I got the message.


I replied by saying we should be having sex and describing what we should be doing and how it would help her fall asleep. What I wrote wasn't  x-rated, but well up into the R-rated category. I knew what I wrote but didn't see anything wrong with it. Janet immediately responded that I was way out of line and she was very upset. I wrote I was sorry but I really didn't believe that I did anything wrong. 


I was totally unaware of how offensive and inappropriate I was. 


It hit me a half hour later and I was devastated. I sent off email after email for the next day or so feeling terrible if not close to being crushed. Janet was shocked at the time, but understood and quickly got over it. She is one of the few people that understands FTD and can put up with me. At times I feel it might be easier not to follow anything with no self awareness or insight, like so many of my fellow FTD sufferers.  Of course I fear my condition will deteriorate and at what point does Janet and the rest of my loved one's have enough of me.


I've lost so many I've loved to FTD.


I ran into a professor I know a day later and told him the story. A good friend of his wife has FTD and is in the final stages in a facility. He is an intelligent, good natured man and he has gained my utmost respect. Subsequently after hearing my story, he told me his friends wife was at my stage when FTD started progressing very fast and she soon was totally unaware all the time of what she said. 


Of course he didn't realize the devastating effects his words had on me. I didn't say a word. 


There have been an alarming number of incidents lately. For the first time a lifelong friend, Marc Turkel found in necessary hand out an FTD awareness card asking to please pardon my behavior/language because of a Neurological Disease. We were in the office supply store Staples. I've prided myself in carrying these cards but have never needed to use one of these "Get Out Of Trouble Free Cards". Marc was in from Seattle for 3 weeks to help me with the filming and spend time with me. 


Welcome to the wonderful world of FTD.



6 comments:

  1. Good Blog. Like my Husband, you have awareness, not always in the moment but later when it hits you the embarrassment is real and genuine.

    I pray you have friends who will stand by you through this journey, who are close enough to be there physically with you.

    Strength to you in this journey.

    http://www.caringbridge.org/visit/johnjaycox

    Lorraine Cox

    ReplyDelete
  2. Thank you for your comment Lorrie.

    Your comments as well as others keep me going. I live my life with FTD and am embroiled with many other lives of people across the world. Each day brings new challenges and situations.

    The path I have chosen is not an easy one, but it is fulfilling.
    Right now it's Monday morning and I'm at home in bed instead of Starbucks. This is the first Monday I've missed in 9 months.

    I'm emotionally exhausted.
    Howard

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  3. Hi Howard.....

    Thank you for having the courage to write this blog. I have been working on a blog myself, but have been too sad to even open my page. My husband has recently been diagnosed with FTD. The doctors believe it is Picks Disease. Like yourself, I believe my husband was misdiagnosed with a mental illness. It began about 3 years ago when my husband started to behave strangely. He believed his co-workers (of 15 years) were out to get him. Everyday seemed to bring more and more bizzare behaviors. He was walking into peoples homes in the middle of the night, pulling electrical fixtures out of the walls at home, setting the attic on fire, pouring an entire box of baking soda on me when I was sleeping because I needed to be "cleansed." That was only the beginning. I had to have him Baker Acted and he was diagnosed with scyzophrania. I thought this diagnosis was strange because my husband and I have been married since our teen years and he had never had any mental issues. For a few years I continued to explain to his primary doctor and mental health specialist that even though he was taking a boatload of psychotropic meds, something just was not right. He began to have difficulty with his short term memory as well as language problems. He could not add 4+4 anymore and would argue if you tried to explain the answer was not 78. I finally decided to take matters into my own hands and seek out a different doctor. The very first visit to the new doctor was very relieving to me. The doctor spoke to my husband for a few moments and asked him several questions. She stated immediately that something was very wrong. She ordered a number of tests including an MRI and cat scan. She made several referals to specialists also. Now, we have a diagnosis, which I am thankful for. However; if the mental health "specialists" had done a brain scan three years ago, we would have known sooner and would have been able to not only prepare but possibly had slowed down the memory loss, the cognitive functions loss, the muscle control loss, etc...... I have spoken to several attorneys, as we are now broke and have nowhere to turn, and they have all refused to take a case against the mental health facility due to the fact I had my husband Baker Acted. His struggle, which is truly our struggle, continues daily. He is declining rapidly, it seems like on a daily basis now. This is a devestating disease not only for him, but also for the entire family.

    I too am emotionally exhausted watching his mind waste away evryday. The only "good" thing about this disease is that my husband has no idea what is happening to him or even that there is something happening to him.

    ReplyDelete
    Replies
    1. I'm so sorry to hear about your plight. It is all to familiar to me and many others. I just found out my Long Term Disability Insurance company doesn't want to reinstate my benefits. FTD is covered, they just don't want to pay. I'm devastated, broke and there's now a good chance I will wind up in the streets and institution before my time.

      FTD is devastating and I'm doing everything I can to get the word out.

      Delete
  4. It is comforting to know I am not alone, thanks.
    The Forbes article lends great credibility to those who would doubt us and our affliction...
    Personally, I came out of the closest a couple days ago and informed 4 people close to me what is going on. I still need to inform my closest family members.

    Please forgive me for posting anonymously. I wish I could be public, but I have ongoing problems with a nasty divorce... I tell myself I need to stay underground a bit longer.

    ReplyDelete
  5. Hi anonymous,

    You are not alone. I started a FTD Patient Support Group on Facebook which is private and closed. There are 30+ members so far. Your welcome to join anonymously. Feel free to email me at howardjglick@me.com

    ReplyDelete

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