Tuesday, September 10, 2013


*Couple of days ago I received a refund from NYS for overpayment of medicaid. Go figure. Anyway, decided to celebrate by having a steak. Last time I had a steak was over a year ago. A friend, Diana took me out to a fancy steakhouse in NYC.

Now I haven't had a slice of pizza since I moved to Arizona and I'm doing pretty good. Except of course for the cheap ass Mexican food that's the best in the world. I have lost 9 pounds. Was walking up the stairs to my apartment with bags the other day and my jeans slipped halfway down my butt. Not into the ghetto style, but was smiling. Weight and pants going down. Only have 2 pairs of jeans. Have plenty of nice clothes and my death suit, but I need to drop another 20-30lbs. I'm really hoping to get out of Walrus state. One inspirational FTD'er friend from my group lost 25lbs in a month. Mind over matter. Put your shrinking FTD mind into it and the body matter goes away.

FTD is a war. Your constantly battling yourself, society, your friends and family. It never ends. Your never really sure about yourself and you know it's only going to get worse. Many caregivers and others ask why we frequently go silent. It's because we're not following the conversation or what's going on around us. We're slipping and we know it. I'm sure there isn't a caregiver out there that isn't stumped why all of a sudden there FTD loved one is jabbering off in a non-stop incessant rant to a doctor or a stranger but goes silent when around them. How hurtful. Does my loved one not love me or care anymore? 

I'm aware that I don't care - MM

Most personalize it, but few get it. We FTD'ers have changed and are continuing to change. The way we our brain operates has changed. The way we act, think, talk and see the world is different. Most of us know there's something wrong with us. We're just don't what. Yet our loved ones look at us and our cuckoo behavior and know we're off the wall. The FTD'er  looks at there loved ones and know they don't get FTD or you. You don't follow them and they don't understand who you are, where you've gone and why you can't come back. How can you explain that you care, but just no longer think about caring or care about thinking about caring. Now I force myself to think about caring by forcing myself to say thank you a million times a day. To force myself to ask whom I'm with how there doing? To force myself to be/seem interested. To be just as gracious to someone who sends me $5 as $100. I fight like hell.

I want to be, therefore I am. 
I care, I love. 

Much of the time I feel like I'm watching TV when I'm with or around people. I'm on the outside looking in. Just sort of an observer and not really part of it. Little patience left for most and the bullshit of daily life. Don't want the smalltalk, just give me my F coffee and let me do my work.

You want to hear crazy. It's rare to find an FTD'er among us who doesn't think each week they can go back to work and resume a normal job and life. Spoke to an FTD'er friend yesterday who heard of a teaching job opening. Decided to go back to work. Then saw the application. Oops, couldn't fill it out, FTD. I'm up 21 hours a day and do nothing but eat, think and breathe FTD. I know exactly what I have and what I'm facing yet I constantly think I can return to work in some capacity. FTD is so "not real" to the people that have it. Yet it's very real and we need to isolate ourselves from our loved ones because they "know", yet most don't know. FTD is actually quite simple. FTD is losing your mind to an awful disease. We slip, rewire and gain back a bit. Slip some more, regain a bit back. On and on it goes.  Some faster than others, but the outcome is the same to every FTD'er.

For me personally, FTD sucks. I know I'm losing it bit by bit. I haven't isolated myself here in Arizona, but I'm very cautious. I know no one. It's now 9:24am and I'm getting fuzzy. My brain production is over till tomorrow. Heading soon to meet with an FTD'er and loved one. I'll pop back to life for a couple of hours like I always do, but it takes a lot out of me. To me the boxing match is never over. I've always one last fucking round left in me no matter what. Ain't no fat lady singing in my world.

The above was my typical FTD rant. FTD'ers express in different ways. My rants also come out in my writing as a way of creativity. I've never written before this blog in my life. Never took a college writing course. Never wrote for fun. Some say I'm pretty good. Spoke to a wonderful lady in Minnesota yesterday who has FTD and isn't crazy. She wakes up at 3am and writes poetry. Another started painting last year and her artwork is in galleries. UCSF has a program for FTD'ers and explores why many all of a sudden have creative talents that come out.

Here I go. Back to writing. FTD tired, confused sitting here at Starbucks in Arizona checking out amazing woman, living and loving life. My FTD hypersexuality is back and sexual inappropriate remarks are begining to flow again. I never say anything crude or disgusting. Just borderline or slightly crossed the border inappropriate jokes or comments. This woman across from me at Starbucks had a fairly big and colorful tattoo on her leg. A few inches of it was exposed from her pant leg. I couldn't stop checking it or her out. It was driving me crazy that I couldn't see the whole thing. Told her I couldn't do my work because I keep checking out her and her tattoo. Told her she had to show me the whole thing, no matter how much of her had to be disclosed. Hey, I had to work and she was distracting me I told her. She laughed and complied. It was a lovely large band with butterflies and roses. When she left she stopped in front of me, flashed a brilliant smile and huge goodbye. What the hell, made my day. 

Really couldn't care less about my exhaustion. Just a different feeling. Annoying bit of a weird headache, but the hell with that to.

*Scouted out a Steakhouse in Old Town Scottsdale by driving around. Old Town is really cool. It's the old west with old cowboy bars etc. I circled in an indecisive FTD'ness for a while and there it was. Appeared to me like Vegas out of the desert. "Chophouse" Perfect. Looked like a subtle, non-pretencious place to sit my carnivorous ass and chow down. I also knew that this would probably be the last steak for years. Economics and health.

Yes, parked the car and went in. Stood looking up at the big food board. It wasn't registering. I just didn't get it. Huh, nothing but chopped salads and juices. WTF - "Chophouse" was a fucking chopped salad and juice bar. I started looking around. The restaurant was full. It was 90% full of incredible woman in yoga/gym outfits. One more beautiful than the other. Took a deep breath and thought, "Devine intervention". Okay, I need and should eat healthy. The prices were salad type. The big juicy steak sleazed out of my mind. I looked at the pretty young girl behind the counter. Enquired to whether they had WiFi. Yes, they had free internet. Healthy cheap food, internet, great people watching. I was home. Screw the steak. The hell with the carbs. There is a God.

Chophouse while slow

Have now been to "Chophouse" a few times. Outdoor and indoor seating. Can film "Howard's Brain" there to. Wide open and less noisy than Starbucks. The staff is absolutely wonderful. Told them I'm moving in. Young, vibrant enthusiastic and caring. Plus they do there jobs and are good at it. Place is well managed and run. Huge variety of salads and there great. All sorts of juices, haven't tried them and won't. Luxury item. I'm a budget tap water sort of guy. Staff not yet well versed on FTD, but I'll convert them. Now I just need not to blow it. 

Have had a couple of complaints about the unrefined language used in my blog. I sincerely apologize to those offended, even though I truly don't give a shit.



  1. Just for the record, Howard, I VERY much enjoy your use of "real" language. I'm vera aware that FTD'ers haven't the filters anymore, to always check and choose their expressions. You're doing a terrific job of keeping it real, using language that reflects your own ideas, your daily challenges, and the high frustration of having f-ing FTD. When I was diagnosed two years ago, we used to call it "not the f-ing florist FTD."

    1. Hi Vickent. Glad you enjoy my blog. If you have a firm diagnosis with a scan would love to have you in the FTD Patient Support Group. It's a fun, great group. You'd love it.

  2. Vickent, LOVE your last line! You said everything I was thinking! Howard, if people don't like your language, then perhaps your blog is not for them, or any FTD'ers blog for that matter, lol! You are doing amazing at writing, encouraging others, spreading awareness, and living with this disgusting disease. My hats off to you friend!

  3. Howard, I agree with Heather 100%! For those who don't like your language they need to keep their lips zipped or go elsewhere! You're being real and showing what FTD is all about. I love your "I truly don't give a shit" attitude! Can't wait to read your next blog! Take care, Kathy :)

  4. Howard, you do amazing work - don't change a thing. You have been a great source of knowledge for me, and your blogs are just like looking into my own diary. Keep it up - we all look forward to it!

  5. Ronwiedemann@hotmail.comSeptember 11, 2013 at 3:07 PM

    Hey Howard,

    I really enjoyed your latest blog about life in Scottsdale. I was in Old Town about 20 years ago. I went to a restaurant, not sure if it was The Chophouse. Anyway, I ate a fried rattlesnake and got a certificate to prove it.

    Your observation about FTD'rs believing they can return to work hit home. I read the want ads all the time and still collect unemployment benefits, though not for much longer. I volunteer at a Senior Center and run a men's group at an Adult Daycare Facility where I am a "member"

    I no longer drive which also inhibits my employment possibilities. To get to the Daycare I am forced to take a "short bus". They charge me $9.00 each way,although I have a Prescription for Transportation. Funny, when I used to drive for transportation company, I transported Heroin addicts to obtain their daily Methadone dose. Sometimes, these addicts would "act out" and be kicked out of their respective programs. The State would place them into another program, all at taxpayer expense.

    My wife and I cannot understand why someone who chooses to become addicted to an illegal substance is provided with state funded transportation benefits while someone with FTD through no fault of their own cannot obtain the same services. Comment, anyone?

    1. Hi Ron,
      I know how you feel. When I first got diagnosed 3 years ago in NYC they sent me to social services to get help. The place I went to was filled with drug addicts etc. I met with a shrink and told him I has FTD. Told me there was nothing they could do for me. If I was a drug addict or had Aids there was plenty of help, but not for what I have. Told him I was going to go back to the waiting room and cop some dope and get high so I could get some help. He turned stone face. Then I smiled and he realized I was kidding. Point made, I left. One of the reasons I'm an FTD advocate and started the FTD Patient Support Group.



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