Sunday, July 17, 2011

FTD - Social Inappropriateness

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Thank you,
Howard Glick

I have been diagnosed with frontotemporal dementia. Each case is different and to each individual there is a broad spectrum of symptoms and it's pretty much mix and match. I have never met another individual with FTD/Picks. All I know is what I have read and what I have experienced day to day.

Frontotemporal dementia is in a category of rare neurological disorders. The frontal and temporal lobes are usually generally associated with behavior, personality, and language.

This disease strikes individuals predominately 40-60 years old and is a drastic life changer. I was 45 years old when I was stricken. Memory can be affected, but that usually is in the later stages. In frontotemporal dementia, portions of those lobes slowly shrink. Signs and symptoms vary depending on the portion of the brain effected. FTD victims sometimes undergo drastic changes in their personality. They may become socially inappropriate, impulsive, sexually hyperactive and sexually socially inappropriate, or emotionally indifferent. Speech and the ability to communicate and understand language can also be compromised.

There is no cure for frontotemporal dementia. It is a progressive disease, but the symptoms can be treated.  We are now in the infancy of learning and gathering data about FTD. With the capabilities of modern communication and the internet we should hopefully begin to facilitate more accurate communication and information on the disease with greater speed to help all involved.

What exactly is social inappropriateness? Since it is to impolite for the medical community to describe or write about, I intend to do exactly that. The purpose of this blog is not to be crude, but to share the experience and pain that people with FTD, and other types of dementia's go through on a day to day basis. I am in a support group each week with remarkable people that have different types of dementia. Some of our experiences are the same and some are different. We all share the same feelings of being misunderstood, isolation, loneliness, and pain every day.

 Once again, the only way to accurately depict what socially inappropriate behavior is to give real examples. Any names of people I use are being used with their permission. These incidents I am sharing with you happen to be on the tamer side of the spectrum.

Last week I was with my friend Ruthie at Fort Tryon Park in NYC and we were sitting on a bench when a fellow walked by with a unique looking dog. Ruthie and I were engaged in conversation and I shifted gears and all of a sudden said,"That's the ugliest fu___g  dog I've ever seen in my life" without missing a beat.  I said this in a matter of fact way, without shifting my tone of voice or getting loud. Ruthie, knows I do this and can't help it immediately had an alarmed look on her face and said, "Howard". The man who was walking his dog immediately turned to me an said,"What did you say".  I told him I wasn't talking about his dog.

Did I realize after I said it that it was a horrible thing to say, yes. Did I care at the time, no. Do I care now, yes and no or maybe not really. Things I do during the day for some reason don't hit me till evening. That night I lay crying in bed thinking not only about that incident, but others similar to it that happen and I cannot control my actions. It is almost like a turrets syndrome reaction, with an arm involuntarily being raised.

A few weeks ago I was visiting my ex-partner of 6 1/2 years Tamara at her apartment. She had one of her closest friends, Pam visiting. I haven't seen Pam since we split up about a year ago. The three of us were engaged in a conversation about the island of Martinique which they were about to leave to for vacation. I just matter of factly said that Tamara had great tits and they should find a nude or topless beach to go to so she could show them off. Some people might make off color remarks like this, but I never do. Tamara is a professional who works in the medical industry and I was a professional in the technology industry before I was disabled. This is a remark that I would have never made 8 years ago when we met. The fact that Pam was there was extremely upsetting. I didn't even realize what I was saying. They both sort of looked at me with a surprised look and it hit me. I got extremely upset and left immediately. I didn't leave my apartment for three days after the incident. I spoke with Tamara and she told me that they were taken by surprise, but understood. This happens to me on a regular basis and can be devastating. I find it extremely difficult to be in public and fear things that I might say and as a result,  I isolate myself away from the public at home knowing isolation is the worst possible action.

Many of these incidents involve sexual connotations. I do not gawk at woman or almost never rude, but when I do make offbeat remarks, it certainly keeps my dating opportunities to a minimum. This disease can torture people as well. I am now 53 years old and suffer what the medical community calls, "sexual hyperactivity". This loving term has been given to people like me with frontotemporal dementia and other strange and elusive diseases.  At 53 years old I have the libido of a 16 year old.  Does this mean I act out and make inappropriate passes and act rude? Ordinarily not, anyone who know me knows I'm the consummate gentleman (most of the time).

These incidents happen and there is absolutely nothing I can do about it.  My current neurologist, Dr. Karen Bell tells me that I live in NYC and not to worry about the cursing. I do monitor my behavior as well as I can and it's exhausting.

Making the most of a dementia enhanced life - Howard Glick


  1. Howard, I have the same type of symptoms, but I can still control what I say to a point. It's terrible that people with dementia can be labeled as "Sexually Hyperactive." I have notice a turrets type of symptoms myself, but still have been able to control. Now remember I was only diagnosed going on about 3 years. I have also noticed what appears to be like loss of feeling in limbs, especially legs. With the feeling that in order for them to work I have to really focus to get my leg to move. I have even dragged them sometimes. Have you ever noticed these type of symptoms? I also have feelings of loss of my manhood, of who I am. Somedays this is so difficult to understand and handle. Sometimes I also seem to forget what is real and what is not! It can be vey exhausting at times, which causes me to want to sleep a lot. I to was in IT for almost 30 years of my life. I was a Director of IT at the Medical College of Georgia and a few other place before I was diagnosed. I'm interested in knowing whether you experience a loss of bowl control to? My heart a prayers go out to you. I think this is a good/great thing that you are documenting all your feelings, thoughts, and behaviors. I know that in my experience with this disease someone can just look at me funny and I'm ready to fight. This does not occur with my family, mainly just strangers. Take care for now.

  2. Hi Kevin,
    People suffering from FTD are labeled with many things, one of them being" Sexual Hyperactive". For me it's having the libido or a 16 year old. Does that mean I think of sex 24 hrs a day. No, but it comes in waves. Am I constantly thinking of having sex with everyone I see, No. But there are many beautiful woman in NYC and I am a man. I am not perverted. I am a gentleman and anyone who know me knows I am always in control. I just happen to be extremely sexual. I do date, am intelligent with a good sense of humor. Having FTD and making offbeat sexual remarks doesn't help me get to the 3rd date. I am constantly trying to bail myself out from things I say. I never say anything disgusting, just weird.

    As far as loss of feeling in limbs. Yes, part of my right foot and leg has been numb for a while and I guess I need to go see my doctor after reading what you wrote. I'm hoping that's nothing.

    I sleep only 4 hours a night like many people with dementia and am exhausted a good deal of the time. I rest quietly a good part of the day. If I don't I get out of control with the things I say. I never ever get violent, and I never think that way. Yes, I do get frustrated, but don't act out. I instead say FTDish things.

    I never have any loss of bowel control.

    I have contact with other people, mainly in the morning at Starbucks which I go to 7 days a week at 6:30am. Besides that I usually stay by myself these days because of the Inappropriate or offbeat remarks I constantly make. I make them during the day and cry when I realize it at night. I am surrounded by the nicest friendliest people humanity has to offer, but I am my own caregiver without family and I do feel very much alone most of the time.

    Hope I answered your questions Kevin, and hopefully gave some insight to people reading the blog. Best of luck buddy,

    Howard Glick


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