Tuesday, June 4, 2013

Whose in Control? FTD or Me.

Last night I met a friend at a restaurant called, "Next Door".  The restaurant was about 60% full. I pointed to a street window table that we frequently sit at, motioned to the waiter and went to wash my hands. Upon returning my friend said that we were to sit at an inner 2 person table. Hey, other 4 person tables had 2 people had them. The waiter was there to escort us. My immediate reaction, "Oh, how wonderful" Nah, turned and said, "Fuck This" and we left. Of course my friend was upset, but if I'm paying good money, I want to sit where I usually sit if available. Hey they don't want my money, to bad.


You can say  that I Howard Glick have become a socially undesirable, inappropriate human being. How do I feel about that? To fucking bad.


Having FTD makes you less tolerant for bullshit and has you blurt out exactly how you feel at any given moment. You lose your self control and awareness to a point. Yes, to a Point.

I say exactly what most people think of saying, want to say and don't dare say. My filter is FTD'ed. I act on impulse without restraint to a Point. We all have a sense of inner awareness and guidance. I say and do things that embarrass people and cause many headaches, but it's rarely out of control to cause a major incident. When I say or do something, I do not realize I'm doing anything wrong. Even after, I usually don't think I've done anything wrong. After a while, hours or days it does hit me and make sense what I did was wrong or didn't make sense. I coined the term last year, "I'm aware that I'm not aware". That's still holds true and this is a hell of a way to live your life.

So where does inner awareness or control take over.  I've never been arrested or had an incident with police  involved or even the threat of a major incident. It's been proven there is no correlation to violence with FTD. Exceptions to the rules like everything in life exist, but there aren't a bunch of crazy, violent FTD'ers out there. If there were, I wouldn't need to be working so hard at making the world aware of FTD. everyone would know. Most of us with FTD suffer the same revolving symptoms as me. We drive everyone crazy, but aren't dangerous to ourselves or others. 

Most of us have some degree of awareness. I've met dozens of FTD'ers over the last couple of years and I know the pain. The pain of living and knowing something is wrong but not being able to put a handle on it. Trying to act normal when your way off base. Everyone telling you your sick and you trying your best to act and be normal when you know in your heart something is wrong. We live with FTD and of course we don't want to be sick and try our best to be normal. Then we're accused of being manipulative or staging an act. 

Those of us with FTD are losing our minds, some slowly and some quickly. It is human nature and spirit to fight and try and be normal and want people to treat us as people, not toddlers or children. We go in and out of lucidity with the revolving door of symptoms. Sometimes more in control and aware, sometimes less. Of course we fight or act out when we feel we're being treated like kids or not right. Having FTD can mean acting bizarre behavior without realizing we're acting bizarre. Of course all this is enough to drive any caregiver insane. 

The wonderful world of FTD. Those with FTD are losing our minds and dying. At the same time we're driving everybody around us we love crazy to the point they get sick and lose there minds.

What is inner awareness and guidance. Something that guides humans and keeps us from getting totally out of control. I've never heard of an FTD'er who murders or commit any horrific crime. FTD'ers are damaged by a rare progressive brain disease, but not totally broken. We cannot be fixed. No cure. But something keep us and all things in nature from just totally losing it. What? Don't know, but it exists. We will only get worse over time. I've had a rough 10 years. I'll keep going for as long as possible but my relief will be death. Hey, everyone dies and I've had a wonderful life, still do. But death will be much needed rest and a break. This losing your mind shit is exhausting :-)

Can FTD'ers make a solid contribution to society. Some can, we're disabled not dead. We all do the best we can under adverse conditions. FTD'ers are losing our minds. Some quicker than others. We know there's no slowing FTD down. No medication to slow it, stop it or cure it. We're living life on luck. It's impossible to convey the constant barrage of symptoms that keep spiraling about our brain. We are literally fighting ghosts all day and night. Can't tell you the sheer determination it takes to write this blog, never mind get through every fucking day.

It's 6:45am. Have been writing the above blog for days. Used to whip though them quickly.Things are getting tougher. Of course things will be getting easier with me probably going to be forced to move away in the next few months :-) Starting over with very little support, never mind getting through a move. I'm still committed to making the best possible life for myself and I'll do what I need and have to do. I will keep living and pushing the envelope. 

Just did over an hour of filming for "Howard's Brain". It's going to be a great documentary that Joe Becker will make some day. Chances are I'll never see it, but I know what's in it having unfortunately lived it. It will be excellent for awareness and extremely entertaining. 

Close to 7am and I'm toast. Finished with my productivity for the day. I feel like my writing at this point has become blabbering. Hell of a life. A good life and I'm still writing, filming advocating and living.

* BTW - My friend and I ate at a different restaurant after leaving "Nest Door". When we finished our meal we passed "Next Door". The table by the window was still empty. I rapped on the window to get the waiters attention while pointing to the empty table :-) Tip blown asshole. My friend ran quickly away embarrassed. FTD

* Casper the cat from a previous blog will recover from it's numerous injuries. The cat incurred $6,000 in medical expenses.


------------------------------------------------------

My friends have set up a site to help me since I've run into unforeseen difficulties. Please visit the site below for a further explanation and to help. Thank you.



6 comments:

  1. well done again!

    I too sit where I want or just leave. It ain't easy but you should always do that.

    FTD (Fuck Those Dorks!)

    Paypal is easier for me, sent a message to Alice Walton.

    ReplyDelete
    Replies
    1. Hi A,
      Like your FTD (Fuck those Dorks) That's a new one for the books :-)
      There is Paypal on this blog page. Upper right below best of the Web award. Yellow Donate button for Paypal.
      Thanks so much.

      Howard

      Delete
  2. Howard, my husband walks out of restaurants all the time if he feels he's not getting the attention or service he wants. It is embarrassing, but I usually follow him with my head slightly down, avoiding eye contact with anyone. He doesn't have FTD (that I know of), but he IS from NY. Are you sure just being from the Big Apple doesn't make b.s. less tolerable? And btw, that waiter was rude. My husband would have tapped on the window to make his point, too! Can't wait till you meet him, you guys will get along great. Uh oh, what am I saying? Yikes! ;)

    ReplyDelete
  3. Howard-Just checking in. I got a revised diagnosis of Corticobasal Degeneration, which I guess is in FTD family of things you'd rather not have. Still haven't gotten my driving privileges as I am very slow to react, especially on my left side. I have trouble talking, walking and varying cognitive abilities. I am a very successful entrepreneur but am unable to conceptualize deal structures and attention span, sequencing of intellectual activities are becoming more limited. I've hired various assistants for managing financial affairs and keeping up physical strength which has really deteriorated. I have a counselor who specializes in brain disorders. He helps me deal with limitations and trying to balance my life. Very frustrating as I can't seem to "push through" as I always have in the past. If I go too hard, I pay for it at some point in utter exhaustion. I do a lot of yoga but lately hard to build strength so I tend to focus on restorative and meditative aspects. Good thing is I don't have AD and most of my executive functions are there, somewhere, just difficult to get out. I can feel deterioration and in spite of positive attitude know I'm not headed in a good direction. I can't get to "I can beat this thing" attitude. Anyway, all the best from beautiful Colorado!

    ReplyDelete
    Replies
    1. Hi K. Jeffrey,
      sorry tho hear about your diagnosis. Your welcomed to join the FTD Patient Support Group. It's a secret Facebook group for those with FTD. It has about 65 members from 10+ countries. Am attaching a link with more information about the group and how to join. Feel free to email me at the address below with any questions.
      All the best.

      http://earlydementiasupport.blogspot.com/2011/12/ftd-patient-support-group.html#links

      Howard Glick
      howardjglick@gmail.com

      Delete
    2. Hi K.
      Just want to let you know there are 4-5 members of the support group from Colorado.
      Howard

      Delete

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