Thursday, June 27, 2013

FTD Travel Adventures

Going on my second day in Arizona. So far the trip has been going according to FTD style. Drove a friend crazy who was offering to give me a ride to the airport. I told her I would take a bus, then a lift from her, then bus, her, bus, her. Probably changed my partially deleted mind 8-10 times in 12 hrs. Even once in the car I told her to cut a bus off and I'd take it so she wouldn't hit traffic. She drove me halfway to the airport and I took the airport bus from there. When I move from NYC, there will be people that miss me, but many be snickering quietly, "poor Arizona bastards. They have no idea what there in for. Howard FTD is now your problem :-)"

Hey, no one will ever die of boredom being around me.

Well, got off the bus at the wrong Terminal at the airport. I've no idea how. That's a first. airports and air travel are 2nd nature to me. These days I build in hours of extra time for self caused events, so this didn't phase me. Didn't go into stress/anger mode, but was annoyed. Grabbed the airport shuttle van. I realized this was a good time to go into NAFW Mantra mode (Not a Fucking Word) till I arrived in Phoenix. My friend Gary reminds me of NAFW before every trip. God Bless Canada. Bored shuttle driver boy wanted small talk about how people go the wrong terminal. I ignored him rather than FTD him.

Once on board we sat and sat. 30 minutes later the Captain announced we were experiencing a "Performance" delay and it would hopefully be rectified soon. I turned to the person next to and said "performance delay, in other words we have a broken ship which there trying to fix so we don't crash and ruin everyone's day. Performance Delay -give me a fucking break. My seat mate of course was thrilled to have me next to him. We took off an hour later. 

My flight to Phoenix was via Minneapolis. Of course one delay creates another so as I landed I realized the Phoenix flight started boarding 20 minutes earlier. The captain announced that everyone should stay seated and those with connecting flights should get off first. Of course when we got to the gate everyone stood up at once. I wanted to catch the that flight, but wasn't panicking. Had no pressing business in Phoenix so I'd grab the next flight. "Performance Delay" - Kiss my FTD .....

I bolted off the plane practically running over Delta girl and looked up at a monitor. My Phoenix flight was at Gate F10. I turned towards Delta girl and asked hurriedly, "Where's F10, I'm late for my Phoenix connector." Delta girl smiled and said, "Your at F10, this is like winning a lottery, your really lucky". I looked behind me and sure enough my NY flight was the connector to Phoenix. Wow, I looked at Delta girl, "If I was really lucky I'd meet someone tonight in Phoenix and have great sex. She gave me a shocked, laughing, blushing look. Then a remark about my inappropriateness. Oops, FTD'ed it. I was now laughing and sighing at Howard and looked laughingly at Delta girl and asked eyebrows lifted if she was heading to Phoenix. No. working the Phoenix Gate. We talked FTD for 15 minutes and we later rehashed the incident on Film for "Howard's Brain" as I reboarded my Phoenix bound jet. Her final words was that she was going to Google "Howard FTD" when she got home. One more tiny step for FTD awareness.

Arrived at Phoenix and went to Payless Rent a Car for my $11.00 a day rental. Of course I knew after taxes and BS it would be about $20+ a day. Payless boy asked if I wanted additional coverage. No thanks. He then told me I needed it because I had a debit card. Last year I paid $8ish a day extra at Enterprise so this wasn't a surprise. Payless boy told me it would be an additional $40 a day. NAFW mode was now history. "Talk about getting fucked up the...... by Payless. You reel me in at $11 a day and now we're in the $60's." Payless boy immediately chopped it down by $25 a day and on it went. Finally got to the car and of course realized there was no way I was going to drive. FTD driving rules are in effect. Checked the car out and the seat was way to high. I signaled another Payless kid. He told me everyone has that problem. Showed me a pump lever you had to pump up and down for the seat to go up or down. Told him it was like my penile pump at home. He cracked up. ( I needed a medicinal prescribed penile pump last year after prostate cancer surgery).

I sat for about 45 minutes leveling myself. FTD driving rules in effect. I'm an excellent driver, but as with any disability special precautions must be taken. I never drive when I'm the least bit upset. Cell phone off. Radio off if I'm not familiar with the area. I know many with FTD that drive and many that no longer drive. I do drive a stick in NYC every few weeks so my skills are current and I've had someone driving with me.

I visited an incredible assisted living facility here in Phoenix yesterday that had 5 acres of beautifully manicured grounds for it's residents, including FTD'ers. Lisa O'toole gave me a wonderful tour and I met with the staff at length. I was o...... to be continued.

Need to cut this short. The cool off Misting system just went on. 108 degrees yesterday. Didn't phase me. There is a difference between humidity and dry heat. stick in NYC every few weeks so my skills are current.

Need to cut this short. The cool off Misting system just went on. 108 degrees yesterday. Didn't phase me. There is a difference between humidity and dry heat.

Scottsdale, AZ Starbucks and the evil misting 

New York City


Monday, June 24, 2013

10 Years of FTD

I was on up to 17 pills a day for 6+ years and tried just about every pill and mixed cocktail the medical community could concoct. The medical community believes I was having a paradoxical reaction to many of the drugs. Ativan made me manic and antidepressants made me depressed and suicidal. Of course since the meds didn't work they gave me over 100 ECT's (shock treatments) and implanted a device in my chest VNS Vagus Nerve Stimulator which is now turned off. I call this pacemaker type device "Space Junk." One of my main reasons for this blog is furthering awareness of FTD as so others will not get misdiagnosed and get mistreated like me. This blog has now crossed 70,000 people. 

I have one of the best FTD specializing neurologists in the country out of Columbia. She has me off all pills. Haven't taken a pill in 3 years. Yes, I have difficulties, but trying to treat FTD with unproven meds is like trying to hit a moving rabbit with a bow and arrow. FTD is a moving target. Constant change and progression of FTD make the type of drug and amount obsolete quickly with side effects causing drastic changes to the FTD'ers behavior and mood. There is a trend to prescribe less pills to those with FTD and lower the dosages. We now belong to the "Magic Pill" society where we are brainwashed into thinking there is a pill cure for everything. Nice fairy tail.

10 years of FTD and I'm doing okay. I hope to have another 10 years to go. My life is probably much rougher in real life than anyone can imagine but so what, I'm living life. I hear from and know many others now with FTD for 10+ years so I know I'm not alone and will be around for a while.

The last few weeks I've been mulling over moving away from NYC. Besides driving myself crazy,  I've been driving everyone around me crazy. I want to thank to thank all my friends who set up the fundraiser to keep me in NYC and I appreciate every penny that's been donated. Though we are in the middle of the fundraiser, I've decided that I will be leaving NYC. I was hoping the fundraiser would give me 3 years or so of stability, but as we all know everyone out there in FTD world is devastating financially. I heard of my first Homeless FTD man a few weeks ago. I'm sure there more out there we don't know about. Luckily his Church has stepped up to help me. Thank God we have religious institutions that are there for people in need. I consider myself to be extremely lucky for everything I have in life.

A few months ago I went to Florida to check out possible places to live. Lake Worth and possibly Tampa are my plan B. Plan A is Arizona. Florida is hot and humid with Arizona being desert hot and dry. Arizona is much closer to Seattle where my teenage children reside. I miss my kids and the Florida is the furthest point in the US from Seattle. 6 hour flight with a 3hr. time difference. I spoke at the Arizona ALFA conference last month and was incredible impressed by the Assisted Living in Arizona which is known to be some of the best in the country. The people I've met from ALFA were extremely nice and have offered to help me out a bit if I decide to move there. FTD is such an isolating and lonely disease. Either people don't want to be around us or we drive everyone away with our madness. I've plenty I want to accomplish and with the right setting and a bit of help, I could make much progress. This blog, the Howard's Brain documentary, the numerous support groups and forums I belong to including my FTD patient group, as well as the book I started and haven't written a word in over a year. It's about halfway done. I've many project and I'm not sure how much time is with me or against me. 

For the last few weeks I've been planning a trip to Arizona and not blogging. Planning is so, so difficult. I used plan and fly 120 flights a year for business and spend about 200 nights in Hotels. I think the only reason I've been successful in still being able to plan. Days on little minutia details for this trip driving me crazy trying to plan and organize. I did find a hotel for $36 a night and rental car for $12 a day. Bedbugs not included.

The Fundraiser is still up. The money that's been donated, was donated to try and help me stay in NYC.   I'm extremely grateful. This money is helping me here now and I will use this to relocate and get settled. If anyone feels upset that there donation won't be used to keep me in my apartment, please contact me or Alice Walton on the Gofundme site and your money will be refunded. As I stated earlier, the fundraiser is still up and any donations made will be used expressly to help me relocate and get settled.

Tomorrow (Tuesday) I'm off to Phoenix. Wish me luck. Nothing like picking up and moving with FTD to someplace where I really no no one. I feel pretty alone here and it's extremely possible that I will wind up totally alone there. My life, my decision. Either way I look for an extremely productive way to finish this life off. 

I want thank Joe Becker, Marc Turkel and Alice G. Walton for all the work setting up the fundraiser. I'd like to keep it running to help me with relocation and get settled, but if they want to take it down I totally understand.

Will be in Arizona for 9 days and would love to visit any of you out there. Will be mostly around Phoenix area with possible trips to Tucson and Flagstaff.

 I'm planning on making Arizona a new beginning and not the beginning of the end. 


My friends have set up a site to help me since I've run into unforeseen difficulties. Please visit the site below to help me with relocation and resettling. Thank you.

Thank you all,

Tuesday, June 4, 2013

Whose in Control? FTD or Me.

Last night I met a friend at a restaurant called, "Next Door".  The restaurant was about 60% full. I pointed to a street window table that we frequently sit at, motioned to the waiter and went to wash my hands. Upon returning my friend said that we were to sit at an inner 2 person table. Hey, other 4 person tables had 2 people had them. The waiter was there to escort us. My immediate reaction, "Oh, how wonderful" Nah, turned and said, "Fuck This" and we left. Of course my friend was upset, but if I'm paying good money, I want to sit where I usually sit if available. Hey they don't want my money, to bad.

You can say  that I Howard Glick have become a socially undesirable, inappropriate human being. How do I feel about that? To fucking bad.

Having FTD makes you less tolerant for bullshit and has you blurt out exactly how you feel at any given moment. You lose your self control and awareness to a point. Yes, to a Point.

I say exactly what most people think of saying, want to say and don't dare say. My filter is FTD'ed. I act on impulse without restraint to a Point. We all have a sense of inner awareness and guidance. I say and do things that embarrass people and cause many headaches, but it's rarely out of control to cause a major incident. When I say or do something, I do not realize I'm doing anything wrong. Even after, I usually don't think I've done anything wrong. After a while, hours or days it does hit me and make sense what I did was wrong or didn't make sense. I coined the term last year, "I'm aware that I'm not aware". That's still holds true and this is a hell of a way to live your life.

So where does inner awareness or control take over.  I've never been arrested or had an incident with police  involved or even the threat of a major incident. It's been proven there is no correlation to violence with FTD. Exceptions to the rules like everything in life exist, but there aren't a bunch of crazy, violent FTD'ers out there. If there were, I wouldn't need to be working so hard at making the world aware of FTD. everyone would know. Most of us with FTD suffer the same revolving symptoms as me. We drive everyone crazy, but aren't dangerous to ourselves or others. 

Most of us have some degree of awareness. I've met dozens of FTD'ers over the last couple of years and I know the pain. The pain of living and knowing something is wrong but not being able to put a handle on it. Trying to act normal when your way off base. Everyone telling you your sick and you trying your best to act and be normal when you know in your heart something is wrong. We live with FTD and of course we don't want to be sick and try our best to be normal. Then we're accused of being manipulative or staging an act. 

Those of us with FTD are losing our minds, some slowly and some quickly. It is human nature and spirit to fight and try and be normal and want people to treat us as people, not toddlers or children. We go in and out of lucidity with the revolving door of symptoms. Sometimes more in control and aware, sometimes less. Of course we fight or act out when we feel we're being treated like kids or not right. Having FTD can mean acting bizarre behavior without realizing we're acting bizarre. Of course all this is enough to drive any caregiver insane. 

The wonderful world of FTD. Those with FTD are losing our minds and dying. At the same time we're driving everybody around us we love crazy to the point they get sick and lose there minds.

What is inner awareness and guidance. Something that guides humans and keeps us from getting totally out of control. I've never heard of an FTD'er who murders or commit any horrific crime. FTD'ers are damaged by a rare progressive brain disease, but not totally broken. We cannot be fixed. No cure. But something keep us and all things in nature from just totally losing it. What? Don't know, but it exists. We will only get worse over time. I've had a rough 10 years. I'll keep going for as long as possible but my relief will be death. Hey, everyone dies and I've had a wonderful life, still do. But death will be much needed rest and a break. This losing your mind shit is exhausting :-)

Can FTD'ers make a solid contribution to society. Some can, we're disabled not dead. We all do the best we can under adverse conditions. FTD'ers are losing our minds. Some quicker than others. We know there's no slowing FTD down. No medication to slow it, stop it or cure it. We're living life on luck. It's impossible to convey the constant barrage of symptoms that keep spiraling about our brain. We are literally fighting ghosts all day and night. Can't tell you the sheer determination it takes to write this blog, never mind get through every fucking day.

It's 6:45am. Have been writing the above blog for days. Used to whip though them quickly.Things are getting tougher. Of course things will be getting easier with me probably going to be forced to move away in the next few months :-) Starting over with very little support, never mind getting through a move. I'm still committed to making the best possible life for myself and I'll do what I need and have to do. I will keep living and pushing the envelope. 

Just did over an hour of filming for "Howard's Brain". It's going to be a great documentary that Joe Becker will make some day. Chances are I'll never see it, but I know what's in it having unfortunately lived it. It will be excellent for awareness and extremely entertaining. 

Close to 7am and I'm toast. Finished with my productivity for the day. I feel like my writing at this point has become blabbering. Hell of a life. A good life and I'm still writing, filming advocating and living.

* BTW - My friend and I ate at a different restaurant after leaving "Nest Door". When we finished our meal we passed "Next Door". The table by the window was still empty. I rapped on the window to get the waiters attention while pointing to the empty table :-) Tip blown asshole. My friend ran quickly away embarrassed. FTD

* Casper the cat from a previous blog will recover from it's numerous injuries. The cat incurred $6,000 in medical expenses.


My friends have set up a site to help me since I've run into unforeseen difficulties. Please visit the site below for a further explanation and to help. Thank you.