Monday, November 5, 2012

FTD: Pizza on the Wall

The steeple to the left is George Washington High School. Now it is home to between 600-700 displaced by Hurricane Sandy. (shot from my bedroom 11/3)

There is a lot of suffering in NYC and the East Coast. I'm lucky where I live very few were affected by the storm. My ex-wifes home was swept away into the ocean. My weekly delivery from "God's Love We Deliver" didn't make it. A few people have written to me that there making emergency deliveries. I have FTD, but there are people are suffering more than me without electricity, water or displaced. I'd rather it go to people in shelters that have lost everything or people that are house bound or bed bound. 

Have a dilemma here. I see my my children twice a year now. When I first moved back to NYC from Seattle 4 years ago, I had plenty of frequent flyer miles and still had money left. I used to see them at least 4 times a year. Now times have changed with FTD and I see them twice a year. Christmas break is fast approaching and the people who offered to help so my kids could come to NYC didn't come through. One friend offered me Frequent Flyer miles for one ticket. At first I thought I'd be able to book one of the kids to NY and then I'd be able to get the other ticket. Unfortunately because of the Holidays it's twice the amount of mileage to come to NYC as to go to Seattle. There was one choice. To book myself a ticket to Seattle and visit my kids for a week. I made the reservation. Traveling is difficult for me these days and recuperating after takes a while. Hey that's life and it's my decision. Unfortunately life is not that simple with friends telling me I jumped the gun, was impulsive shouldn't have booked it. Last time I was there I rented a car and drove fine. I drove a friends car with a stick a few weeks ago and that was okay. Besides, there's no one I dislike enough in Seattle to run over.  Not yet anyway.  I'd love to switch plans and have Chelsea and Myles come to NYC, but that's not likely.

Of course this whole mess just adds to my stress level. Came close to having a couple of outbursts in the kitchen, but held myself in check saying to myself, "Remember the Pizza".  Not so long  ago I had an outburst and threw a whole pizza against a wall. Of course the wall I threw it against was above the oven and most of the pie went behind the oven. After cleaning the wall I went to get the Handyman to help move the oven and gas lines to get the Pizza out. He knows I've some strange brain disease and has seen some of my antics. He asked with a smile how the pizza got behind the oven. I told him I was the giving pizza flying lessons so it could self deliver and I wouldn't have tip the delivery boy. 

Have canned Starbucks for the moment and am writing from Castle Glick. Some generous people sent me Starbucks e-gift cards and after many months they ran out. I also haven't been enjoying the crowded, noisy McBucks atmosphere. It never really recovered from the renovation mess and I haven't been enjoying myself. As of today I still don't have subway service,  so heading downtown is out. I declare myself an official McBucks orphan. 

Yesterday, I received a text from Warrioress Diana Winoker. You might remember Diana was featured  for the Alice Walton "Forbes" FTD Patient Series.

Diana has FTD and some other major health issues. Dynamic Diana gets up every day and gets out of the house and volunteers somewhere. She has every excuse in the world to sit at home everyday, but instead charges out to volunteer and help with different causes. 

Diana was rear ended a couple of days ago and the accident actually had her back ( which was bad already) injured and black and blue. She had to do the hospital thing etc. Guess what, Diana the fighter was out yesterday volunteering for the Tampa Fisher House at James Haley Veterans Hospital. She sat patiently in pain waiting for the golfers to come in while also watching her Tampa Bay Bucs win. 

People like Diana make life worth living. People with heart and substance.

"Howard's Brain" film project update. I'm still filming away and was just informed by filmmaker Joe Becker that we've amassed 3 Terrabytes so far!

For those of you that don't know how big a Terrabytes is, it's somewhere between a Tyrannosaurus Rex and a  Triceratops.         



  1. What a great response to the handyman - giving the pizza flying lessons. Haha! When we hear about people like Diana we are truly inspired. As you said, she has every reason to stay at home but instead she is out and about, giving her time to the community! Keeping active and involved is a great way to slow the progress of the symptoms of dementia and is a core principle of our methods here at Dementia Support. If you haven't read about the Montessori Methods for Dementia, check us out at

    Thank you for sharing your experiences, I am glad to have found this blog :)



    1. Thanks Jon,
      I'm honored to have Diana as a friend.

      All the Best,

  2. Howard,
    Your trip to see you children will work out for you. I have faith it will. Nothing impulsive about wanting to spend time with your children especially over the holidays. I think the hard part with the link to the site provided by Jon shows mostly older aged individuals. It's hard when this disease strikes the younger crowd. I really couldn't see taking my husband to something like that even though he would probably benefit from it.
    A break is good from Starbucks... you can go back after.
    Maybe you should consider volunteering? Keep in mind your pizza.

    1. Hi A,
      FTD strikes mostly younger people with the average age 40-50's. Wipes out a whole family.



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