Friday, December 28, 2012

FTD - Are we in Control

First time I've gone to Cafe Buunni in about a week. Incredible how noisy it is and there's no one here. Thank God for noise reduction headphones and music. They should be given out free to all FTD sufferers. Noises are amplified and with FTD you hear everything at once. If you go to a concert, it's like you can hear each individual instrument and voice. It's overstimulating and overwhelming just to be in society. I live in NYC which is far from the quietest place on the face of the earth.

A few weeks ago I went to the movies and saw the new James Bond movie. Funny, can't remember the movie or what it was about. but I can remember a couple of annoying people. I went to the early morning showing so it wouldn't be crowded and of course it's matinee prices. People were few and far between. I already had implanted in my head I wasn't going to say  a single word to anyone during the movie no matter what. Of course one seat in front of me to the right was Mr. Idiot who needed to check his texts every 5 or so minutes. After a few of these I was no longer watching the movie and figuring out my options. The most tempting was just slam the back of the chair with my foot since I couldn't say anything. Oh, BTW I try to maintain status quo in my life by using my Mantra, NAFW (not a Fu__ing word) in most public situations. If I'm in a constant flowing situation like in the streets or in a supermarket, I don't have a chance at not reacting or keeping my mouth shut to any situation that happens. But if sitting in Cafe Buunni or a movie theater where I can sit or have some focus, I usually don't say a word.

Back to Mr. Idiot and his texting. I tried redirecting my body so I wouldn't see the light. Failure. I was going to shout in his ear to shut off his F __ing cell phone, but NAFW kicked in. Luckily the stalemate ended and Mr. Idiot was saved by the kissing couple behind me. Hey when your young, movies are for making out. I only wished it was me. But, yes another big but, they stopped making out and started having a conversation in spanish. Not whispering like you would expect, but in normal conversation voice. Unfortunately I didn't have any James Bond weapons with me. NAFW. Mr Idiot again with the light from his cell phone. NAFW! Okay, I'm going home. I stood up and looked at Mr. Idiot and kissing couple. Fuck em. I just stood there looking around for an empty area devoid of human beings.  Kissing couple said something to me. I was blocking there view. Poor babies. I looked them and smiled. NAFW.  I had spotted an empty area but was in no rush. Maybe I should just stand there for the rest of the movie. Eh, off I went to the emptier section where I watched the rest of the movie in peace.

My kids are in now and we're heading to see a movie this morning. I do my best as a parent to teach them manners and install values in them. Of course when your divorced, part time teaching is tougher. Last night we ate at a restaurant and my daughter (19) was telling me how I was sort of "out there" tough she and my son (15) were young. Chelsea reminded me once years ago we went out to a nice restaurant  and we all left before the food arrived because neither of them had there napkins on there lap. Chelsea told me I was always a bit extreme, even before FTD. I looked at both kids and asked where there napkins were. They both smiled. Neatly placed on there laps. Point made.

I've always been a bit tough with out there techniques. It's helping me with my never-ending battle with FTD. Yes, I break down and throw a pan with eggs in the sink once in a while. Dealing and being aware of "end of life" reality and knowing your mind is decintergrating slowly with no chance of recovery gets intense. My union with FTD is one of constant battles and accommodation. I keep trying to live life with my head up and keep fighting on no matter what. 

So what are my New Years resolutions? To keep my attitude positive and not let FTD tear me down. I'll keep fighting to be aware of the symptoms and do what I can to manage them without beating myself up for things I can't control. Will I fall? Yes, but I'll get up. I'm planning to keep filming and keep myself out in my NYC world with my camera so one day people can see what the world of FTD is really like. I've some FTD awareness trips already planned, so I'll be taking "Howard's Brain" on the road. 2012 is almost over and it's been a good year. I'm alive, thinking, have good friends, my children and am living life. I've also seen the best humanity has had to offer with some incredibly generous people help me get through both spiritually and with other help. What more can you ask.



  1. Have fun with your kids and Happy New Year!

  2. Howard, You always write about how much your head phones help you. DOES everyone suffer the same with noises or is that just with you? I know the disease is different with each person, but mostly the same in behaviors. Great New Years resolutions for everyone to live by. Happy New Year 2013! Stay strong:O) Peace my friend!

    1. Hi A,
      Noise and overstimulation are something most with FTD suffer from. Most in my support group do suffer from it as well as I hear from many caregivers in various support groups that loved ones suffer as well. As far as everyone? FTD is a wide and diverse disease and I'm sure there those that don't have those symptoms.

      The headphones help me from getting overwhelmed and staying focused.

  3. It used to be that an mp3player was plugged into my head before embarking on any task. Before that, disc, before that casette. Now, in the past 3 years music plays no part in my life. That has been a major change. Also find listening to books on tape easier than watching tv - or god forbid, Howard, going to a theater. Yow!!! It all must have to do with sensory stinulation.

  4. Howard...When my daughter was young I also put my foot down under certain circumstances. (Like you and the napkins.) She's 34 now and has a Masters in Psych and a secondary degree in education. She's very good and loving to me and shows me she cares every chance that she gets. They may not appreciate us in the moment that we are "teaching" them, but it all works out, doesn't it! I'm happy that you got to see your kids...may the memories of their visit help you get through the upcoming year.
    Happy New Year to one of the bravest men I know...YOU!
    Take care,


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