Tuesday, February 19, 2013

FTD Island

FTD Island
An FTD Patient Sanctuary

Wouldn't it be nice. You unfortunately get a bad lottery ticket and get stricken with a life altering terminal illness. You lose your job, money, loved one at an age where life is going great and your on cruise control. As you slowly lose your mind, you drive those left around you crazy and strip them of the life they had. Your loved ones and caregivers watch as you change and disintegrate before there eyes.

75% of those with FTD don't have any insight or awareness that they're sick. The other 25% are painfully aware and become foreigners to themselves and others around them. We lock ourselves in bedrooms and homes painfully isolating our deteriorating minds from a world gone amok. We try everything to return to normalcy. Medications work for some, loved ones support helps others. Sometimes we are aware and care, most of the time we live not even thinking and just existing without awareness. There are always those wakeup calls that bring us back. The hug and kiss, the "I love you Dad." We give a response and are "back" before fading to who we are now.

Yesterday I booked my trip to Salt Lake City for the AFTD education conference in April. I've been trying in earnest to book it for over a month and struggling every step of the way. Confusion and indecision kicking in at each step. Constant frustration over every little detail that I don't know if I should do or not do. For business I routinely booked 120 flights a year, hotel, car and restaurant reservations. That was without the demanding job I was responsible for. Last year I remembering booking my reservations to the AFTD Conference immediately after it's announcement. Air, hotel, transport and corresponding paperwork were a breeze. Yet I feel exactly the same physically as last year.

A year ago it really bothered me standing out in the street not knowing where to go or what to do. Now hanging and wandering are almost normal. There are those brief moments though. A couple of weeks ago I was doing my supermarket/restaurant wandering thing of walking in and out of each place like I have a thousand times before. It was raining and I was standing under an awning when a couple approached me that I haven't seen in a while. They asked if I was okay. I sort of stuttered an answer and just stood there with a sort of shocked look. They had a concerned look and it was obvious I was in a bit of distress. In that moment I felt my life incapsulated. Where weird behavior and strange life struggles was so normal to me and then a shocking slap across the face wakeup call. No question things are slipping.

Now I'm facing having to move. Oh yeah. We having fun yet. Heard back from my landlord who owns multiple buildings in NYC. No luck, unless I want to move to a rough area of the Bronx. No luck from any friends or acquaintances either. I have a few months before I run out of moving money, so I'm not panicking.

I'm heading to Tampa in March with an open mind. Received a letter from someone about the lack of public transportation and how everything is scattered with the occasional gas station, 7/11 etc. Of course I'm picturing myself in 90 degree heat waiting for a bus for God know's how long. Finally get to a supermarket and after doing my "wandering" thing, come home empty handed to an empty refrigerator because GLWD God's Love We Deliver isn't in Tampa. Help! I want off this roller coaster. I spoke to my friend in Tampa who told me not to panic because there are always solutions. 

Amazing how quick life can turn upside down. I just have to keep it right side up. I will land on my feet  no matter what happens and things will be okay. There's just to much stuff to get accomplished and I can't let a little FTD get in my way. My 15 year old son Myles told me from Seattle, "Dad, you just have to keep fighting." So right. He feels my struggles.

A member of the FTD Patient Support Group found an Island in the Caribbean for us to all go. I'd be there in a heartbeat. 



  1. Howard, as a lifelong navel-gazer, am "painfully aware and become foreigners to themselves and others around them." But it is a total mystery to me why normals get all upset by my behavior. What is their problem????? Can't they take a little free speech? Anyway, can we ride our bikes to our new island?

    1. Hi Les, we'll get waterski's on your bike so you can ride it over from the mainland.

  2. How about Costa Rica? Lots of Americans retire down there and you can live comfortably on $1000 a month. I assume you'd prefer a place where you have friends, but if you moved there I'm sure you'd have lots of visitors. :)

  3. Hi Karen,
    Costa Rica? Would love to, but I need to stay in the US to receive my SSD.

  4. No you don't. I get mine in Israel. They can't send it to North Korea, but other than that, you're free to go wherever you want. Tampa might be great, go down there and see. But make sure that this friend is ready to be responsible for you and help you find solutions for things like meals, rather than just saying, 'there must be solutions.' Have your friend set up a meeting with a social worker. I'll see if I can find Jewish Family Services around there. I have friends who have great intentions but often don't follow through. You're about to put all your eggs in one basket. Make sure it's strong. (I don't want to confuse you any further, and I understand that you have to move, I'm just worried about you.)

    You know, you ARE an Israeli army veteran, and you would get benefits as a new immigrant. Any interest in exploring that option?


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