Wednesday, May 1, 2013

The FTD Adventure Continues

Well, after a year of off my Cheerios routine breakfast, looks like I'm getting back on track. Last year I tried the Atkins diet and switched from cheerios to eggs and bacon. I got severely scolded by my Cardiologist  and a doc friend. The Atkins autopsy was done at Columbia and Atkins was a mess, according to my cardiologist that was privy to the results. Ordered me off of it.

Well I haven't been able to get back into my breakfast routine for 10 months. I have cheerios here at home. Bought milk plenty of times and threw out the containers unopened and spoiled. It's so hard to keep up with routines once there broken. FTD sucks, what can I tell you. Being alone and trying to stay on track with routines is incredibly difficult. Anyway, a few days a friend demanded I pick up milk while on the way home. I did and now it's 3 days straight eating Cheerios for Breakfast. "One small step for man, one giant leap for an FTD'er." Back on track. I don't need much of a push from friends or a companion, but I admit I do need a bit of help and a little bit of help goes a long way.

For me this is a significant accomplishment and I'm very proud that I got myself on track. Then I think about it and it's scary and ridiculous what my life has come down to. I pick my battles and keep on fighting.

Hygiene routine is the first and foremost in my FTD battlefield with that pesky parasite, depression a close second.

No matter what, I'm showered and shaved early each morning without missing a beat. From there it gets more difficult. Used to brush and floss my teeth twice a day. Somehow that dropped down to just once a day in the morning over a year ago. Better once a day, than not at all. Told my dentist a few months ago that I brush each morning and she told me to switch to the evening. Easy right? Not with FTD. Now I was skipping days missing nights and not brushing at all. Not good, teeth are the one thing in life that if you ignore them, they will go away.

Would like to say there's a happy ending, but I missed brushing my teeth last night. I did brush them this morning though. I'm making sure it's done at least once a day. Sometimes in the afternoons. Crazy life. Clothes, wash, cleaning etc. etc. The list goes on and on. 

My morning coffee routine is now a certifiable disaster. To me this is extremely important because this is the most productive part of the day. I put all my energy and focus on writing my blog and watching nice butts go by. On alternate days I keep up with my support group as well as all the others in FTD World. I used to go to Starbucks in my neighborhood, but that became to noisy and crowded after the renovations. I tried heading downtown for a while but the noise of the subways and overstimulation of mid-Manhattan became to much. That and the expense of being downtown ended this FTD'ers foray.

No question that I'm getting bombarded by noise and overstimulation here in NYC. I do wear noise reduction headphones, but that only goes so far. Doing the best I can to fit in here in NYC with FTD, but it's almost like trying to put a round peg in a hexagon hole. NYC is not an FTD friendly place.

I will be leaving the neighborhood tomorrow and will be trying to find a internet cafe to go each day to do my work. I've a few that I'll be trying out. I will continue to try to make it in NYC. I started showing FTD symptoms about 10 years ago. When diagnosed 2+ years ago I thought I'd be either dead now or close to it. Life expectancy then was 2-10, average 6 years. Now it's 2-20+ years. I'm going to make for myself the best quality life I can. Hopefully here in NY, if not, well America's a big country. I will make the best choices and decisions I can.   I'm alone in a complicated situation.


*If my writing seems off, it's because I'm writing from a very uncomfortable environment.  Things will get settled one way or another in the near future. I intend to live life and not wait for death.


  1. Thanks for the blog Howard. Have you tried a short list somewhere of things that must be done every day. Just food for thought. Have a great day Howard.

    1. Thanks Lori,
      Put up a dry/erase calendar board and filled it out for the month. That was last year. Haven't looked at it since the day I put it up.

    2. :-) We tried lists on the wall, and post its everywhere, too! Pau; would proudly stick them on the wall, and never notice them again... The most scary one was 'Turn it off!!!' on the stove...!!!

  2. I love this and hate it too. Unless someone is living it, they have no idea what it is like and they think there are such obvious and simple solutions. One day my mom was baffled by the change in me and she kept asking questions, trying hard to understand. I forced myself to give her example after example and explain so she could get it. Finally she said "carry a little notebook and write reminders of where you parked so you can find the car later, write reminders of what you need to do, get, and accomplish and then just go through that list every day. It works great for me!" (she does not have FTD) Seems so obvious and easy. Its impossible. I tend to set things down all the time and have no idea where I put them so I know I have set lists down in the store or wherever and walked away from them. I try to put lists on my cell because I know I carry it, but I forget the list is there, and I also set my cell down. I've carried lists in my hand before with all the details, and forgot the list was there so I never looked at it. IT WAS IN MY HAND!!!

    Glad you got the cheerios routine down.

  3. Howard,
    Keep fighting for life every day. I know your pain about brushing teeth, routines that become once in a lifetime, and finding those special places. I found a nice coffee place in San Francisco, The Creamery... Perfect in every way. Too bad we can't beam it to you. I'd like to beam it to my neighborhood too.

    I found it on google maps using this text "restaurants near 4th Street and Townsend St, San Francisco"
    I spent time reading all the reviews. My wife and I were amazed how The Creamery fit our bill exactly.

    I feel exactly like you and anonymous who can't find the list that has all the stuff on it to find... The other day I had no idea the year it was. I searched the house and my computer to find the current year. It was gone, nowhere to be found. I went to sleep in some other year. Next day, I woke up and found the year at the top of calendars, on my computer menu bar, all over the place. I finally came back to 2013. Who says time travel is not possible. I do it every day.

    Here are some videos I took at my last trip to San Francisco:

    Thank you so much for your blog and support group.
    Enjoy your Cheerios.,

  4. Howard,
    I bought a box of Cheerios last week after I read this post. I eat them every morning in your honor (yes, I really do). Join me!!!


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