Tuesday, February 12, 2013

FTD and Motivation

FTD sucks the motivation out of you. I've been highly motivated all my life. I never worked a 5 day, 40 hour work week, alway 6-7 days and hours as many needed. I've lived hard and traveled hard. My vacations have been extensive and I've been lucky enough to have been to 3/4 of the countries that occupy this planet. I love smiling, laughing and having a good time.

How fitting my arch nemesis would be a disease that robs your mind and sucks the life out of you. The last time I left my apartment other than a quick cup of coffee was meeting the filmmaker, Joe Becker downtown months ago. Seems the only time I go downtown is to get a haircut and those are few and far between and are instigated by the prompting of comments.

In June 2010 when I was diagnosed with FTD/dementia I used to take the same 2 mile walk every day in the city. I used to have coffee at my friends David/Ruthie each morning after waking them at 6:30am. Then it was Starbucks till it was made clear my royal presence was no longer welcome.

Now, I'm at cafe Buunni smiling because I'm out and doing something, writing. I come here maybe 2 times a week for a couple of hours to write. What do I do the rest of the time. Nothing. I sit at home and do nothing. The TV might be on but I rarely watch it. I'm in an empty gaze and miles away.

I sit alone and try to understand the truths of how I'm living and try to figure out and influence the present and future. How do I get myself out the door? How do I write consistently in my blog? How do  I get back to filming? Eating healthy and taking care of my hygiene which is slipping. The truth is it's getting harder to do anything or think anything through or do anything. I feel no pain nor anything holding me back. It is nothing tangible that I can say, ha that's the reason I'm acting this way. So what is it and why can't I just get up and get moving. It's because an area of my brain is under attack and has stopped functioning. My motivation has been stolen from me.

The whole concept of being robbed of your motivation is so foreign, I'm not sure if anyone can understand it. Is motivation a tangible thing you can see and feel. Where does the drive come from that has us function and conquest life. The big toe? No, an area of the brain. When you get paralyzed you can't walk. What happens when that area of Frontal and Temporal area of the brain dies. You lose your motivation. Just one of the lovely symptoms of FTD. Welcome to FTD world.

When I say sexual remarks to someone in the street I've never seen before or argue with the Chinese restaurant owner that she should get divorced and marry me, I'm just sort or doing normal things in my life. BTW I wasn't hurt that the Chinese restaurant owner wouldn't marry me. I don't even know her name. Once again it's an area of my brain is under attack that normally keep humans as humans and under control.

A friend came over for dinner the other night. Within 1 minute I broke dishes, glasses and things went flying. She left and wrote me that I scared her. I wrote back my aggression was not aimed at her and would probably take an army of shrinks to figure out the effects of losing your mind.

I have a friend who is looking to try and find grant/grants to enable me to continue to live and do this work in NYC. Most Grants are for Caregivers or Research. If anyone has any suggestions, please let me know. My landlord and others have told me there are no rents in my price range. New York City is home and I'd like to stay, but I'm preparing mentally to move. I'll be visiting Florida in March and looking for a place I can afford. Right now I'm leaning toward's the Tampa area. Might as well be somewhere warm and by the water. I have a few months and am not in panic stage, but pressure is there. Hope I'm not heading towards disaster. Navigating unchartered waters with FTD has become a way of life.

As a good friend always writes, "Forge ahead."



  1. Change is good, and in your case obviously it is necessary.
    I am fearful of any change that would upset my routine. I am on automatic most of the time. If I get in an unusual situation, alone, I become frozen with indecision. Usually it is just a fun adventure but as I progress it could become a big problem.
    be well my friend, Peter

    1. Hi Peter,
      I'm a bit scared of change to my living routine. Hopefully my behavior won't get me killed or institutionalized. This is all part of the wonderful adventure called life.
      Would love to meet you some day in Baja and share some Margaritas and trade FTD war stories.
      All the best to you my friend.

  2. Oh Howard, I am so sorry that your life is going this way. I hope other writers are sharing in your patients support group. Florida is nice, but do not go fight a gator thinking you can win... meant to make you smile. May God give you the strength to continue on the journey that he has used you in. You have made a difference and perhaps I should have been one to tell you that. Many of us should tell you that. You are doing all you can for others and that is a difference that is never forgotten. I wish my husband had the motivation to write, speaking of the topic at hand, but he just doesn't. It is hard for him to do much except he works at a job making much less than he ever did. He was fired for being what they thought was rude. So he took anything, because of the good man he is on the inside. He is my hero. Thanks for the reminder. Judy Jones

  3. Howard, When you write I understand. As a caregiver I have gone through the disease myself. It's a terrible disease I feel for you. I hope you can make your move to Florida, really research or get help from friends make the right choice. I know you have your people that help you right when you need it the most. Stay strong my friend. Keep up on your writing so we can be on your journey with you. Peace:O)

  4. Hello Howard,
    I saw in your last couple of posts that you are thinking of moving to Florida. I live in Gainesville, Florida and my daughter lives in Tampa. The only thing I would warn you of is this;

    A mentally disabled acquaintance of mine moved to Florida from NYC and he told me he was so lonely here in Florida because in NYC just about everything he needed was easy walking distance (his disability kept him from driving), but in most cities here in Florida places to go to are more scattered about. You will almost always be near a convenience store or a gas station here, but groceries or a coffee shop might be more of a challenge. Just something to think about.

    I know you are well-traveled but you might want to look at places in a way that addresses your limited lifestyle now, before you make the big leap of moving. Of course there are also buses in our cities but they are light years from being a convenience compared to NYC transportation. Aside from that welcome to Florida!! I am a 2nd generation Floridian and wouldn't live anywhere else except for Tucson, Az. where I have also lived. I am a warm weather girl and I don't like snow even a little bit, ha.

    Anyway, whatever you decide to do, I hope it will bring you some peace of mind. I know that your living situation and making decisions about staying or leaving are stressful...even without FTD. I wish the best for you as always.
    Take care,

    1. Hi Vicki,
      Thanks for your input. I'm going down to visit Tampa in the beginning of March. I'm extremely stressed about moving for all sorts of reasons as well as what you described. Moving is the last thing in the world I want to do, but I'm out of options.

  5. Many New Yorkers are moving to Philly now. It's got the culture, great hospitals, restaurants and amenities and rents are way cheaper. Jefferson is doing research into FTD; maybe you could get into a study. Something to consider.


  7. This comment has been removed by a blog administrator.


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