Wednesday, September 18, 2013

Bad Docs


Looking for Resources on FTD?: AFTD is the place to turn when looking for information on and support with FTD.  Our HelpLine is available to anyone with a question regarding FTD – 866.507.7222 toll-free or  The Resources page of our website is full of valuable information for those seeking general information and support

* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at to join.

Well, did exactly what I tell everyone not to do. I needed a doc and didn't follow my own proper laid out procedures of success. Instead of seeking the best and the brightest, I went for the quick fix from the health provider list. I switched my insurance to a Phoenix plan.  Figured I'd just get a local doc for a cursory check and a cardiologist referral to make sure I don't check out anytime soon. Have been getting weird chest pains and needed to check it out. Haven't had time or motivation to deal with this so time has crept by.

 My new neighborhood. A bit different than Manhattan

My health provider, United Health called me and told me they wanted to send a nurse over to check me out. Ugh. Had one of those visit me in NYC.  That didn't go to well. Idiot nurse came to my NY apartment with a spanish translator. I'm not sure what her native language was, but she needed an English translator as well. This was when I was a novice FTD'er. I tried to be pleasant and couldn't understand a fucking thing she said. Had just gotten out of the hospital for my cancer operation and she changed the bandages. We then went into FTD. I tried to explain I suffer from a rare type of dementia called FTD. She then went into her broken english tirade. "I smart person. I have masters. I know dementia, you no dementia".  I then in perfect english told idiot nurse and her translator to  pick up there shit and get the fuck out of my apartment.

When United said they wanted to send a nurse, I was a millisecond from retorting fuck no. Yea, but have these chest pains and my friend Sharon has been bugging me constantly to get checked out. Made the date and put together a plan. Turned out Mary Ann was incredibly pleasant. About 60, close to retiring with the perfect disposition. She heard of Pick's, but never FTD and never met an FTD patient. Of course I already planned for her to see the "Howard's Brain" trailer and get the whole FTD schpeil. Sorry, Howard's place, Howard's Brain, Howard's rules. She was very interested and wanted to see and hear everything. Was going to have her help me with the application for Banner Memory Center here, but forgot :-) How ironic. She was attentive, sweet, intelligent and caring. She did a full check up on me and heard my concerns about the chest pains. She offered to help me find a doc and make an appt. No, I'd effectively tired myself out with my schpeil was tired and ready for her to leave. Rest time. Only problem is Mary Ann refused to leave. Mary Ann actually spent the time walking me through the process of finding a doc through there website. Then having me call to make that doc my primary and make an appointment. It took a long time but she was resilient to my FTDness and hung in there. We got a doc in the area picked out, called and did the beauracratic phone hold, transfer, press this fucking number and that fucking number thing. Finally had a humanoid on the line who asked me all the same questions the recording did. Mary Ann wouldn't go till I had an appointment. Finally after what seemed forever I was told the next appt. was in December.

We both had enough. I promised Mary Ann I would find a doc, now that I had the web page highlighted. She actually called me the next day to follow up. It's a little different here in Arizona than NYC. I did find someone less than half a mile away and made an appointment.

Whew, getting tired now. It's 9:54am and am fading. The receptionist and front desk people at the docs office helped me fill out the myriad of paperwork. Couldn't find the box to check off Frontotemporal Dementia on the sickness page. What a shocker. Put in LARGE letters in the "other" box Frontotemporal Dementia on the bottom of the page.

Met doc F who was extremely serious and hard nosed. Doc F scanned my paperwork and he asked me about my heart history. He didn't think my chest pain was heart related, relief. Then he told me there was a problem with my medications and he was going to change them. There was some sort of dangerous mix. The only meds I take are for blood pressure, cholesterol etc. I was shocked. Thank God I came in. This doc caught this in a minute. Man was I lucky. He caught a problem that my cardiologist, Dr. Jacques Merabb inadvertently caused. I asked if he could recommend a Cardiologist. Nope, I was fine seeing him and didn't need one. Huh, my trouble radar started to ping. Told him my cardiologist was also my GP in NY and he prescribed my heart meds. He then asked where in New York, Upstate? Dr. F asked with an arrogant tone. No, Columbia in NYC. Ping, Ping. Dr F asked what the VNS - Vagus Nerve Stimulator was for. I explained I was misdiagnosed as bipolar and this was to try and regulate it. It never worked because I was misdiagnosed. Told him I used to be on up to 17 pills a day. Dr. F didn't know what a VNS device was, nor was he interested. Ping, Ping, Ping. I then brought up FTD. He knew it was a rarer type of dementia. No interest in knowing anything about FTD, it's symptoms or effects on me. Yes, but Dr. F found a bad mix of medicines. 

I was a bit shellshocked. I have FTD and don't really follow things in real time. Couldn't really follow the events intellectually that were happening with Doc F. This is common with us FTD'ers. Things that happen hits us "after the fact" and we figure it out later. Not easy figuring things out partially brained. Had blood drawn and made an appointment for a few days later. I asked on the way out if Dr. F was always that cold and gruff. Yes, he was a career military doc. That's the only reason I'm not using his name now. Being a veteran (Israeli army) and american patriot, I have a deep respect for people that dedicate themselves to national service. Realistically, Dr. F  Should have stayed in the military or become a mortician. Still though, he knew his medications and saved my ass. 

It was in the middle of the night the radar pinging went off with an alarming shrill, torpedo hit the ship and it immediately sank. Boom. I realized Dr. F was nothing but an egotistical, arrogant idiot and a lousy doctor. Here he is playing savior saying my meds are wrong, I don't need a cardiologist and trying to poke fun at me and Dr. Merabb. He never asked if I had a neurologist for FTD or needed one. 

One of the reasons I'm doing so well is the time, effort and research docs and check there history. 

Dr. Jacques Merabb - MIT, then Harvard Medical School - Resident Cardiologist at Columbia University Center and Medical School since the 1980's and has won multiple awards. Columbia is known to have one of the best, if not the best Cardiac treatment centers in the world. Dr. Merabb saved my life. Went to see him about chest pains and got me treated correctly with surgery and 3 stents. He's my GP and Cardiologist. Dr. Jacques Merabb is a great doctor. I know there's absolutely nothing wrong with my meds.

I called Dr. F office the next day. Told the receptionist that I found Dr. F to be an incompetent, arrogant asshole. Please tell him for me he's fired.

Yes, I've FTD. Yes, things get tougher. Yes, I need to work harder. Yes, I've the will and will. I had the best possible docs in the world for Team Howard in NYC. One of the reasons I'm doing so well. Will do the same in Arizona.

How many or you check references of a plumber or electrician. How many check references, medical schools and complaints of the person in charge of your health or brain?

My friend Brandt once told me a joke. What is the special name given to a doctor who finishes at the bottom of the class in Medical School? The answer: Doctor.



  1. love this one howard x

  2. This is why I always interview my doctors before they become my doctor.In many cases, I know more than they do and that scares the heck out of them!Does the University of Arizona have a branch of their medical school near you? There might be someone on their faculty who went to Columbia and might know of your doctors there.

    1. There's only one Diana. Going to slow down on this medical craziness and go back to my methodical methods. After all, I'm pretty healthy besides Cancer, Heart Disease and FTD I'm perfectly fine.


  3. Howard, I hope you don't mind but I did borrow some of your words (with full credit to you, of course, and a link back to your post) for my blog post today as one of your comments in this post very much resonated with me. It is the same way I feel after a doctor's office visit, but you worded it perfectly when you said that you "don't really follow things in real time." So I felt it was only appropriate to use your words for the description.

    If you want to see what I quoted from you, it is at

    1. Hi Doreen,
      Hope your doing well. Been a while. Copy, use or share my words anytime. No need to ask. We're in the same awareness business.

  4. Would it help to record the doctor's comments etc on , for example , a mini dictahone or on a smart phone - to play over again at leisure?


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