Thursday, November 29, 2012

FTD and Medicare

In July 2010, I re-entered the world as we know it. I spent about 7 weeks in the hospital psych ward  and was relieved to find out I wasn't bipolar. Now I had a some new weird opponent called FTD to face. Returning to my apartment alone and broke, I also needed to find specialized medical help and had to start dealing with insurance companies. I had medicare and a supplemental insurance carrier.

If you have straight medicare, you probably pay 80/20. There are many free medicare supplemental programs you can join for free.

 I called my medicare supplemental insurer, Fidelis who gave me the names of  2 neurologists in my area. I googled each name and I found Dr. Kyra Blatt who was highly qualified and specialized in dementia. I started seeing Dr. Blatt, a community doctor who I loved dearly and had gone way out of her way to help me. Dr. Blatt gave me some of the best advice I since being diagnosed. I was literally going crazy having learned I had FTD and was combing the internet for all information on this dreadful disease. Everything pointed to a soon to come drastic death. Dr. Blatt banned me from reading about FTD on the internet because there was so much inaccurate information. She told me she would've died a dozen times in the last month if she self diagnosed from the internet.

I was all shrink-ed out after 6+ years of hell. 17 pills a day, over 50 ECT's Electric Shock Treatments, VNS Vagus Nerve Stimulator surgically implanted in my chest with a wire running toward's the Vagus nerve to give my brain shocks.  I fired my current psychiatrist and decided I could do a better job, so I hired myself.

Now that I was off the 17 pills a day after being misdiagnosed for six years my head was slowly clearing from being kept in a medically induced fog. It took me close to a year to recover to my FTD self. My behavior, language and 6 year history was like a checklist for a poster boy FTD patient.  I was having many new difficulties which was discovered by my friend David and Dr. Blatt to have been side effects of the only drug I was on, Aricept. Dr. Blatt had contacted Dr. Ted Huey, a well known FTD specialist at Columbia. Dr. Huey confirmed that many FTD patients were having difficulty with Aricept, a drug made for Alzheimer's patients. Aricept is now on the "medications to avoid" list by UCSF. Dr. Blatt suggested that I start seeing Dr. Huey or one of the FTD specialists at Columbia. The only problem was my insurance didn't cover Columbia or any of the doctors in it.

At the same time I developed prostate cancer and my Urologist for that was out of St. Lukes hospital which was far from where I lived. I needed to have my prostate removed and surgery needed to be arranged. All the above was happening in November 2010 so I needed to act fast. It was open enrollment time for Medicare and I needed new insurance by December 31st.

The Medicare supplemental carriers were like vultures. I made some calls to the insurance carriers and found them extremely accommodating. They had free breakfasts at local diners, would come directly to my home and all sorts of fun places to meet. Each one had a yellow page type directory saying they covered just about every doctor in NYC. Each one also tried to close me like a used car salesman. My head was swimming and I was getting no where.

Finally I decided to do things reversed. Instead of looking at insurance companies and checking out there doctors and  yellow page type plans, I decided to find the doctors and hospital I wanted, then find which  insurance company met my needs. I needed to find the "Best and the Brightest" docs out there.

Columbia University Medical center was near me, so I started researching there doctors. Once I found out what doctors I wanted, I started calling there office managers and finding out which medicare insurance carriers they took.

I had long lists of up to 10 insurance carriers per doctor. It was painstaking work cross referencing, but I needed excellent for the major medical issues I had.

My priority was of course finding the best neurologist who was familiar with FTD. I met doctors Ted Huey and Karen Bell and liked them both. I was at an award diner where Dr. Bell won an award for being a top neurologist from Columbia. Dr. Bell was my age and from the area I grew in so there was a connection. Oxford Insurance was on Dr. Bells list.

I needed a Surgeon to remove my cancerous prostate. I found Dr. Ketan Badani was the Director of Robotic Surgery from Columbia. I met with him and liked him. Oxford.

My GP luckily took Oxford so I wouldn't need to change him.

My future Cardiologist is also a resident of Columbia and Harvard Med School grad. Oxford, yes!!!

I called the Oxford rep and she was at my apartment the next day signing me up.

One of the reasons I'm doing well is I have excellent caring doctors. There's nothing that can be done with my FTD, but Dr. Bell is experienced, intelligent and I trust her implicitly and she always has excellent advise for me. In fact, every one of my doctors I trust my life with. I've had enough screwballs and now when I see a doctor I know they listen to me and care.  I'm not just a number. I

I receive letters all the time from people having incredible difficulties with there doctors. My advice, go do the research on the internet and find the best doctors in your area. Check there insurance with the office manager and then go meet and interview them. It's only your life at stake. PS don't trust the online insurance carrier list of docs. They change insurance frequently. Check with the office manager.

Right now it's open enrollment time for Medicare. You can change carriers now. For those of you with choices of insurance carriers, do the same. Put in the effort to find the best docs you get a long with. You and your health will be thankful.



  1. thanks for yet another clear explanation of what this is and how to deal with it. Peter

    1. Thanks Peter,
      Sometimes I wrap one up like this morning and I'm so exhausted I don't know if it makes sense.

  2. Howard,
    Great advice - direction.
    I will have to reference another site that lists that drug Aricept - thanks for heads up.
    Stay strong... peace.

    1. Hi A,
      Here's the UCSF site about which medications to avoid with FTD.

  3. Interesting advices, I am looking forward for more update! Thanks for sharing!

    Dementia specialist


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