Wednesday, September 28, 2011

FTD - I'm Not Dead Yet!

For those or you new to my blog, the previous article,"The Pain of Being Misdiagnosed" was about how I got sick and was misdiagnosed for 6/1/2 years as bipolar. It described the horrors of everything from being kept in a medically induced fog, to be given twice the normal amount of ECT's 50+ (shock therapy), to having a surgically placed experimental device in my chest VNS Vagus Nerve Stimulator. It also discussed the day to day nightmare that tore apart my soulmate and caregiver until we finally separated. After a tragic incident a year ago, I was hospitalized for 6 weeks where they discovered I had a rare neurological disease called FTD/Frontotemporal Degeneration.
If you haven't read the the previous article, " The Pain of being Misdiagnosed" you should.

In June 2010 the Psychiatrist at NY Cornell Hospital decided to put me on Aricept after it was discovered I had FTD/Frontotemporal Degeneration. The Psychiatrist should have checked with a neurologist. Aricept is used for Alzheimer's type dementia and it is well documented that there can be adverse reactions if given to someone with FTD. Doctors mistakenly give Aricept to people with FTD because it is a form of dementia. FTD and Alzheimer's both fall into the category of Dementia's but where Alzheimer's effects memory, FTD does not, at least until the later stages.

Please remember, not everyone has adverse reactions to Aricept. If a person has been taking Aricept for an extended amount of time, there is less of a chance of an adverse reaction. If there is any question that it might be having a negative impact on your love one, don't panic but contact your neurologist.

Paradoxical Reaction
I left the Hospital and went home knowing I had this rare form of Dementia and that my life was forever changed. It was still feeling the effects of the pharmaceutical cocktails I was kept in a medically induced fog on for years. I was feeling clearer but was having strange issues with my behavior (nothing violent or crazy, just stranger than normal). Just FTDi-sh. There were also these strange episodes:

I was getting very confused and disoriented on a consistent basis. There was absolutely no pattern but I would seem to have these episodes that would last minutes to hours.The handyman found me out in the street and took me home. I would get on the subway and not be sure where I was and ride the subways for hours. I could easily stare at wall in a daze from minutes to hours. There were plenty of times people would talk to me and I couldn't understand a word they were saying. It was like they were talking Martian. I would stare at them with a blank look on my face. I would also could not tell which way traffic was moving and New York Taxi Cab drivers will aim for you if you step into the middle of the street.

It was dangerous and I was getting worse. 

I also started looking up Picks disease/Frontotemporal Degeneration on the web. Everything was devastating.  I was consistently reading people with Frontotemporal disorders typically live  only 6-8 years. This was consistent with The Mayo clinic, The NY Times, The US Department of Health and Human Services etc. 

I had the disease since 2004. That means  I had FTD for 6 years. I was totally disoriented a good deal of the time and it was getting worse. The message was very clear: 

Howard Glick was about to die. 

Finally I found a wonderful community neurologist in September who specialized in Dementia. Dr. Kyra Blatt had an office only a few blocks from where I lived. My lifelong friend David used to take me there every other week.  Dr Blatt BANNED from reading anything else on FTD on internet.  I was obsessed with the fact that I was near death and who could blame me.

Dr. Blatt contacted the Neurology Department at Columbia University Medical Center and confirmed  that I was having a Paradoxical Reaction to Aricept and immediately took me off it. It took what was probably months for the horrible side effects of Aricept to wear off.

I went through four months of having a terrible Paradoxical reaction to Aricept and mixed with the negligent life expectancy statistics written in well known medical periodicals and newspapers I thought death was imminent.

Outlook (Prognosis)

The disorder quickly and steadily becomes worse. Patients become totally disabled early in the course of the disease.
Commonly, Pick's disease causes death within 2 - 10 years, usually from infection and sometimes from general failure of the body systems.


U.S. Department of Health and Human Services
          National Institutes of Health

"People with Frontotemporal Disorder typically live 6 to 8 years with their conditions, sometimes longer, sometimes less."

September 2010

It has now been 14 months since I left NY Hospital and I am doing everything possible to keep my health stable and possibly slow the progression of FTD. I am constantly using brain exercising techniques such as strategic thinking as well nutrition, meditation, supplements, exercise, mindset, and many, many other changes in my life to control the symptoms of FTD. Since I went off the medication Aricept I have been taking Namenda. 

All I know is it is a constant battle and I am doing great. Each month I am feeling better and stronger. I am in a constant struggle to keep the symptoms of FTD under control and though life is difficult, I once again have found a sense of happiness and purpose in my life. 

Sharon Denny - Program Director of AFTD - The Association for Frontotemporal Degeneration- Sharon Denny came to New York to visit me a couple of weeks ago. She told me that because it is a rare disease and there is new data all the time it a has been discovered that people are living up to 20+ years with FTD.

Association for Frontotemporal Degeneration
Management and Prognosis

Although specific symptoms may vary from patient to patient, FTD is marked by an inevitable progressive deterioration in functioning. The length of progression varies, from 2 to over 20 years with a mean course of 8 years from the onset of symptoms. FTD itself is not life-threatening.

AFTD- September 2011

Now if I could only find a partner who wants to share a wonderful life that isn't petrified of the letters  FTD, life would  be perfect.

By the way, I'm not planning on going anywhere for a long, long time.

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