I'm Aware I Need Awareness Cards

(Forbes FTD series patient profile at the end of article) 

Brandt Henderson

Was with my friend Steve at Costco yesterday and he asked me to give him some of those FTD awareness cards. This was a bit of a shock, but not surprising. FTD awareness cards or “Get out of Trouble Free” cards are available for both patients and people who are in the company of FTD’ers. I’ve always prided myself on carrying the cards and not using them.

FTD AWARENESS CARDS
by AFTD

http://www.theaftd.org/support-resources/resources/awareness-cards

In fact, I’ve only handed one out once. That was at Staples after berating a cashier for giving me what seemed to be a foot long receipt for a rebate on a ream of paper. The $2 rebate which made a $5 ream of paper $3, was not instantly given at the register. You needed to mail the receipt to corporate with all sorts of information and spend a 45-cent in doing so. Of course they bank on people not sending in for the rebate. I FTD’ed the cashier. Under normal circumstances I would’ve told her to take the ream and Staple it to their “Office Products” butt. Instead I reamed her out about the deceptive rebate advertising, the waste of paper with the foot long receipt, as well as the envelope being sent by me to get the rebate and all they paper being used to send me the $2 check back.

She was upset, so first the first time ever I reached in my wallet and pulled out one of my FTD “get out of trouble free” cards. She looked at it, rolled her eyes and slid it back to me.

Of course the Staples marketing sleaze bags won the battle. I never mailed in the receipt for the rebate. I’m sure they count on that. They will lose the war. I now ignore their advertised specials and shop at Office Depot, or any other office supply store and am no longer be a loyal Staples customer.

I’ve had a few doozies lately. Someone cut in front of me with a car. In most cities the car would’ve stopped, but this is NY so they sped up to make sure I wouldn’t walk in front of it. I had an instant aggressive reaction and spit at the car. This is something I never would’ve done in the past. It’s outside my nature.  Of course as FTD luck would have it, the drivers’ side window was open and the driver got nailed in the face. It just sort of happened. Turned out it was a woman and she was shocked.  Didn’t even faze me. Later it hit me and I was in a bit of shock to say the least. I rarely left the apartment for the next few days.

Seems I’m slowly becoming more “in your face” reactionary aggressive.

Though these incidents worry me, they’re not the norm. I was at a restaurant with a friend Friday night. I told the young waitress how beautiful her moon face was and asked if she was Native American. She told me she was Indian from Honduras.  She told me she was light skinned which was unusual for Honduras. They were mostly very dark. Ah, ha. I found my opening and went into an FTD rant. I told her that since she was light skinned her great, great, great, great grandmother was probably a beautiful Indian woman, who was raped in a village that was pillaged by Christopher Columbus’s New World plunderers. She was now a mutt with a beautiful mixture. We all laughed, had a good time with a free round of wine and beer.

Anyway, these things happen and I start thinking about the future and possibly chemicals or medicines to calm the aggression. The thought of going on those meds so I can be a happy, flatlined zombie smiling douchebag rattles me.  It’s always nice to have a good friend around like Sheila who tells me I need to stay the way I am. It’s easy to listen to the pill pushers.

I’d rather keep the edge and be the apathetic FTD asshole that lovingly raids and breaks up caregiver pity parties by offering to play a violin, while letting them know at least there not slowly dying of FTD. 

As someone with FTD, I demand nothing less than caregivers make the most of life when their FTD’er is gone. That’s their obligation to the one they love, because he or she wants that for them with all their heart and soul. Nothing less is acceptable. I have the same attitude with functioning FTD’ers that they need to live l life as well as they can with purpose and happiness for as long as they can.

(New Forbes FTD series patient profile article) 

Brandt Henderson

http://www.forbes.com/sites/alicegwalton/2012/06/12/its-not-me-its-the-disease-making-sense-of-a-brain-disorder/

Howard

FTD and Apathy

(Forbes FTD series patient profile at the end of article) 

Joanne Douglas

Well I’m back at McBucks ‘181’. I was contacted by some of the other dissidents and we agreed to have ‘reunion Tuesdays’. I missed the staff of McBucks and the cast of characters that hangs out there. It’ll be nice to see everyone for a couple of hours before my support group, ‘Memory Club”.

It’s always talked about how people suffering from FTD are apathetic or non-caring because of brain damaged sustained. It’s true and is one of the symptoms I’m constantly fighting. It’s organic, so I don’t know how long and how successful I’ll be fighting to care.

Alzheimer’s and FTD patients suffer that same eerie feeling of normalcy; yet knowing we’re off.  If you’re familiar with peoples in FTD world, you constantly hear us say, “we’re fine and nothings wrong ”. We know our thought process is off, but can’t tell exactly what because we feel fine. When you have a cold you feel the symptoms. Running nose, fever, sneezing and a cough.

With Alzheimer’s, patients realize there’s something wrong with there memory. With FTD, many of us realize our thought process is awry and behavior is off. Take that and combine it with apathy and you couldn’t find a better combination on any Chinese menu. What it means is we do what we feel like doing, say what we want and couldn’t care less about the ramifications. Each person with FTD is a totally different case. Some get aggressive or violent. Others just say or do irrational or goofy things. Medications are usually necessary sooner or later to help manage the symptoms and try and maintain a sense of baance. All of us are stuck in this weird parallel universe. There’s nothing like being aware you’re out of control, yet helpless to do anything about it. Most aren't even aware at all that there's anything wrong, but some of us are aware that we're not aware.

Our thinking is off and we become apathetic. What a combination. How do I handle being apathetic? I bust my butt, like with everything else. Sometimes I’m successful and sometimes I’m not. It would be very easy to talk about myself and not think about or care for anyone else. If you ask anyone who knows me, they would tell at times it’s all about Howard.

Even though the world now revolves only around me; I do have a need to be a part of it. There are people I love and I don’t want to be more isolated than I am or hurt them. While in a conversation I really need to put a lot of energy in making sure it goes both ways. I now fight myself in every conversation to ask about the other person and to have the conversation go to both ways. Even if I'm engaged in a conversation of little or no interest to me, I still fight and make it a habit of forcing myself to care.

I actually do care, but have to force myself to care and show it. Each time I send an email of text, I force myself to go over it before I send it to make sure I ask about the other person or answer that person’s questions. When I’m with someone I know, I’m acutely aware and constantly reminding myself to ask about them. The longer the conversation, the more apt I am to start losing interest in them or the conversation. It’s exhausting trying to keep engaged.

When in a conversation with someone I don’t know or aren’t interested in, I can blow them off in a heartbeat and couldn’t care less. Rudeness or inappropriate remarks are sometimes realized later if at all.

I’m Seattle bound June 16^th-22^nd for my daughters HS graduation. Haven’t seen my kids for a while and can’t wait.  I deeply appreciate the generosity of my good friend Tamara and my mother that is enabling me to go on this trip.

While in Seattle I will have some free time so if there’s anyone out there that knows me from my blog and would like to get together for coffee or a bite, let me know. It would be fun. howardjglick@gmail.com

(Forbes FTD series patient profile article) 

Joanne Douglas


Forbes- FTD Patient Series When Words Fail -a professor-to-lose-her-power-of-speech/

Howard

Help has Arrived & Forbes FTD Professor Interview

(New Forbes FTD series patient profile at the end of article) 

Joanne Douglas

Many people have asked me about my long term planning. It seems that’s coming together. Recently I’ve reconnected with an old friend who I haven’t had contact with since the 80’s. Glenn, together with Marc is helping me pulling everything together such as wills, power or attorney, trusts etc. There are so many things I can’t grasp. I can trust Glenn and Marc. 

Trust means so much to someone with FTD. 

You literally put your life in someone else’s hands. A couple of years ago I stupidly let a questionable relative into my life when I was diagnosed with FTD. I was warned by people that knew this individual. He turned my life into a nightmare. I later found out he has a horrible criminal history and what he did to me, he’s been arrested for multiple times in the past. There’s no lower scum in life than someone that takes advantage of someone disabled. The NYC police have taken this seriously enough to get involved. Subpoenaed information now backs up my version of what occurred.

Updates: Starbuck’s and Blimping out

Blimping out:

I want to thank everyone for all their concern and helpful comments on my “walrus-ing” issues. Much of many of my issues are due to decline in my executive functions, meaning I can’t put things together to make decisions. Yes, even basic decisions such as meals become confusing, stifling events. One person currently living in Istanbul, Turkey researched and directed me to an organization here in NYC that helps people that can’t properly shop and cook meals due to illness. I want to thank that global caregiver and hopefully one day we will share some Turkish coffee.

The, “God’s Love We Deliver” charity has been a dream to deal with. As with anything these days there’s a myriad of paperwork and interview process. I downloaded the 4 sets of forms that needed to be filled out. Social Worker, Doctor, HIPPA, and personal info. Riverstone “Memory Club” Milagros and Carmen helped me with the paperwork. I phone interviewed yesterday with Bernadine from GLWD and on Monday they start delivery. I actually spoke with Bernadine about 4-5 times in the last couple of days, driving her crazy as only an FTD’er can. She took it all in stride and was extremely nice and helpful. In this era of cold, unhelpful social services she was an absolute delight. GLWE will be supplying me with lunch and dinner Monday – Friday with deliveries on Monday and Wednesday. The only caveat being on need to be home for delivery, which is between 8:30am and 4:30pm. I’m still not sure why the whole universe isn’t wrapped around me, but I’m extremely grateful for the help.

I’m hoping this charitable service will enable me to be more productive with my time and that additional time can be used to help others. It’s impossible to describe how difficult life is when you spend so much valuable time in confusion because you can’t decide how or what to eat.

The Universe is looking out for me because ‘God’s Love We Deliver’ is starting 2 weeks before my Food Stamps get cancelled. There was no way I could get through and respond to the 26-page document they sent me. NYC Dept. of Health and Welfare requested everything but my used toe nail clippings. On top of that I need a 2 hour hearing to determine whether I can be recertified for 73 cents a day or $19 a month.

Starbucks: Since I wrote my Starbucks blog and a many of the regulars scattered from McBucks ‘181’ a few things have happened. There has been another article in Forbes about Starbucks changing its philosophy as well as much talk on social media.

Last week I was in Starbucks ‘145’ and I saw someone eating the most pathetic looking breakfast in the world. A couple of eggs on a small plain round white plate with flat bacon across the top. Next to it was plastic utensils wrapped in clear plastic. It looked so institutional. I took a picture of this and mentioned to the person that this was just about the most unappetizing meal I’ve ever seen. Starbucks had joined the lower ranks of fast food. The man told me he had a fast food background and there’s a huge difference between Starbucks and fast food. He was passionate in making the pathetic meal in front of him seem identical to food served at the Waldorf Astoria. I was trying to read this well tailored, kempt man. Was he delusional or just insane? We continued to talk and I kept having the feeling I knew this guy. He confirmed that I did know him having previously spoken to him at McBucks 181. He worked for the Starbucks corporation. That’s all I had to hear and I asked if I could join him after I had already sat down across from him. He put a paper napkin over the meal, realizing he wouldn’t be eating soon. I didn’t think about how rude I was till later, so if you’re reading this Damien, I apologize. Turned out Damien worked for the Starbucks corporation and was there district manager. We spoke for over a half our about Starbucks and FTD. He was already versed on FTD from a previous ‘181’ conversation. Impossible to sit across from me for more than 5 minutes and not get FTD educated. I told him about my Starbuck’s blog article and how many felt Starbucks was going down the tubes. Damien noted my concerns and told me he was going to pass them up to his boss and someone up the line might call. (and the check’s in the mail)

Sure enough last night, his supervisor did call me and we had a very nice conversation. She asked what changes I thought could be made at McBucks ‘181’ without a whole scale renovation. I spoke and she was attentive without getting defensive or regurgitating the corporate line. I also told her how important Starbucks was to me, enabling me to live a purposeful life, with FTD. I educated her about FTD and the “Howard’s Brain” film project. All and all, it was refreshing to see a corporation such as Starbucks have wonderful representatives and that were actually listening to customers.

It was just announced that a new small family owned café, ‘Buunni Coffee’ will be opening one block from my building. I’m looking forward to having another place to go. I love Starbucks ‘145’, but it’s a subway schlep.

(New Forbes FTD series patient profile article) 

Joanne Douglas

Forbes- FTD Patient Series When Words Fail -a professor-to-lose-her-power-of-speech/




Howard

FTD Weight Gain & 3rd Forbes Interview with Young Minister Parent

(New Forbes FTD series patient profile at the end of article) 

Matt Rouse

Well, I’m blimping out. I don’t have any idea how much weight I’ve gained, but it’s been substantial.

Also just realized I need new reading glasses because I’m having trouble reading the screen. Duh, guess it would help if I had my glasses on to begin with. That’s not an FTD thing, that’s a common life experience.

Anyway, back to the walrus-ing of Howard Glick. It’s been happening for months, but’s been particularly bad of late. Last week I threw out half a refrigerator worth of food. Full-unopened moldy Costco spring salad and other rotting fruits and vegetables. This morning I opened the fridge and the only recent addition is organic milk, which I have with my cheerios at 5:20am each day. At least the fridge will be easy to clean with nothing in it. My freezer is full of fish which I do have a couple of times a week. Filled it up 6 months to a year ago with Costco bulk fish products and cannibalize it once in a while.

I have money for food, so what’s the problem. The problem is I stand at the fridge with the door open and can’t make a simple decision what to have. This is a bit more than your basic indecision. This is going back and forth, staring in and just not being able to figure out what to do. 


Then I head out to the local supermarkets, usually wandering isle to isle and not buying anything. Sometimes i partially fill up a shopping cart and just leave. I get confused over prices and items.

What happens from here is one of two things. The first is I order Chinese take-out or pizza. Lately it’s mostly Chinese because my friend Alice will do me bodily harm if I order pizza. She can tell if I’ve had pizza just by texting me hello.  Chinese or pizza is the beginning of the problem. If I order a pizza pie, I eat the whole thing. Just can’t stop. Has nothing to do with being hungry, I eat way past the hungry stage. I just keep shoveling it in, consciously or unconsciously till it’s gone. I do the same thing with Chinese or anything else, but pizza’s the most dangerous.

Many with FTD have sweet tooth’s. Not me. My mother had type 1 diabetes since before I was born; I grew up without any sugar in the house. I naturally don’t care for sweets.

I also rarely prepare hot foods these days unless I nuke em. Incidents of forgetting things on the burners have made me cooking wary.

These days fruits and veggies just don’t do it for me, I’ve turned to a hard-core carb routine and it shows.

I’m stuck in a rut.  It’s happened before but this time I’m having trouble instituting change.

Many of you in and out of FTD world have dealt with this. I welcome your suggestions though comments here, elsewhere or email.

I desperately need to de-walrus-fy.

Forbes Patient Profile Series 

Matt Rouse

http://www.forbes.com/sites/alicegwalton/2012/05/23/parenting-with-a-brain-disease-inside-the-mind-of-frontotemporal-degeneration/

Howard

howardjglick@gmail.com

Death of Food Stamps

Good morning from Starbuck “145”
(New Forbes FTD series patient profile at the end of article) 
Diana

This is the sad or happy conclusion to my food stamp saga. I’m not sure which it is, but one thing is for sure. It is what it is.

I will refresh others and myself by plagiarizing my own work from July 2011 and then move on to the sordid conclusion.

July 2011

Like everyone else in society, I need to blow off steam, which I do through ironical emails to people. Some of these I’ve been told are funny and entertaining. I recently applied to get my food stamp allowance increased and as life would have it, it decreased. 

"Thank you for explaining to me that everyone has been getting a reduction in their food stamp allowance due to the national debt crisis. My food stamp allowance was reduced from $2.03 a day to $1.45 a day. Even though I am totally disabled it does give me pleasure to know that I am personally able to sacrifice and contribute towards reducing the national debt. It's also a relief to know that because of my 58 cent a day contribution companies like Exxon and GE will not have to pay any taxes, as well as we will not have to burden the top 2% of wage earners of the United States with any additional taxes." 

I initially received $63.00 a month or $2.03 a day in August 2010. The maximum was $200 but that’s what I was approved for and grateful for the assistance. I watched the amount dwindle till it was a stumpy $16.00 a month or 63 cents a day. No reason was ever given. It’s not much fun ingesting cheerios and water for days at a time, to embarrassed to tell your friends.

January 2012

I decided to address the issue and painfully gathered all the necessary documentation showing rent increases, bills, etc. to attempt to get an increase. I took the subway to the food stamp office and waited in the bowels of the NYC Department of Bullshit building for a couple of hours to plead my case.

The municipal employee was pleasantly civilized. She did the usual, bounce me here and there; fill out this and that form. I explained to her I had cognitive issues and she did help me with the paperwork. I asked her if she had any idea of what type of increase if any I would get. She gave “the look” and stated it would be determined by the food stamp meisters. Being sarcastically challenged, I had no idea if she was hinting either way. 

April 2012

Increase was approved and my dreams of a lobster dinner were a delusional reality. My food stamp allowance was increased from 63 cents a day to 73 cents a day. Ten cents a days or from $16 to $19 a month.

It sucks being on food stamps. With FTD, I have short-term memory loss, which means besides basic microwaving, cooking and using gas burners are dangerous. I use them once in a while, but try to avoid them. I like to have hot cooked food and It’s against the food stamp God rules, to buy hot prepared food with food stamps. Not that $19 a month enables you to buy much.

A few months ago I bought grapes for dinner. Seedless grapes, yes I’m spoiled. It came out to almost $6. It was a Friday night and there was a long line. Every store or supermarket in the US uses a different card swiper. There all made in one Chinese factory and it’s a conspiracy to mess with American minds J. I was technically challenged at the cashier’s swipe machine. She said in a loud voice, “Is that Food Stamps or Debit”? I was embarrassed. I retorted, “ Food Stamps and thank God I only get 63 cents a day, so I won’t have to put up with being publicly humiliated for another 8 days”.

May 2012

My living the high life with a ten-cent increase to 73 cents a day turned out to be short lived. I received a 26-page document in the mail from the Food Stamp Gods that I needed to be recertified. Considering a month before I was approved for an increase made me suspicious and a bit paranoid. Letting them know I’m FTD certifiable was not an option. I couldn’t make Heads or Asses of the document, except that I had to have a 2-hour hearing and needed to bring in suitcase full of paperwork for the June hearing. Screw it.

I’m doing okay. I do have help each month and am no longer doing the cheerios and water thing. I doubt it’ll get to this point, but I think I’d rather go out with a tin cup for day than ever put up with this crap ever again.

Eight years ago I was making six figures and flying to Thailand to have my suits and clothing tailored in Bangkok. Now, I realistically can't even afford clothing from the Salvation Army. Guess what? It's morning; I'm at Starbucks “145” writing and doing great. My life has once again regained happiness and purpose.  

I have a blog, a support group, a movie, and some of the best quality peoples the Universe has to offer.

I want for nothing.

In the last few days I harassed and cursed (playfully) someone in an elevator for bringing his mom flowers on mothers day (I forgot it was mothers day), viciously and unintentionally cursed out the facilitator at my Memory Club support group and outbursted at a cop with a haranguing long FTD rant for sloppy driving.

My name is Howard Glick. I have FTD, it sucks but I have a life and will continue to live it and make the most of it. 


Forbes Patient Profile Series 
Diana 
http://www.forbes.com/sites/alicegwalton/2012/05/15/the-disease-that-stole-my-career-inside-the-mind-of-frontotemporal-degeneration/

Routine Change Starbucks

I’ve prided myself in being able to adapt to routine change with FTD. In NYC, change of routine is commonplace and it’s sink or swim. Well I’m drowning.

A few weeks ago I had the wonderful experience of being invited to the AFTD Conference in Atlanta. It was the first year that patients were invited. There were about 12 patients there and it was good to spend a couple of days in the company of fellow FTD’ers. There were also many other people there who I’ve had contact with before including members of the FTD Support Forum and the other various groups. It was a couple of days of laughing, crying, learning and networking.

In the cruel, lonely world of FTD, I applaud the efforts of AFTD to once again reach out directly to patients and show why they are the leading FTD organization in the world. Most of us had never had contact with another patient and it was a relief to see none of us had two heads or were there in a straight jacket and handcuffs. The patients were a solid group who were struggling to extend their life in a dignified manner. Patients of 3 types of FTD were represented. Of course we shared war stories that would leave any jaw dropping. Inappropriate behavior that’s not the type to get into real trouble with, but enough to have us as social outcasts by ending our careers and alienating many of our relationships with family and friends. 


All of us face a very uncertain, certain future.

With my airport travel mantra intact (NAFW), I successfully navigated the TSA. They did confiscate the razor from my grandfather type butterfly razor. I had to stop the TSA agent and show her how to release the blade, so she didn’t slice her finger open. My traveling companion got upset because they didn’t even look at it a few weeks earlier and here they were confiscating it. I kept repeating my mantra and had to calm her down. What a paradox.

Returning to NY had its difficulties. I returned to find my Starbucks closed for renovations. The Starbucks is a 5-minute walk from my apartment and now I had to find new haunts for a few days. I did the run around for a few days and just couldn’t write. I went downtown and around town. I only have a few hours of functioning fully a day to write. I also suffer through waves of exhaustion, which leads me to be less in control of my behavior. Going downtown and being exhausted and out of control is not only difficult, but also dangerous.

For a few days I accomplished nothing. One day I didn’t even make it out of bed. Just unmotivated with no interest in doing anything. For me routine is crucial. Whether I sleep 2 hours or 4 hours I’m eating breakfast at 5:20am and on my way to Starbucks at approximately 6:30am. I get the majority of my important writing done by 9:30am and head home between 10:30 and 1pm. I then meditate or pass out for a couple of hours and round 2 generally starts between 5-6pm for a few hours. This is my routine 6-7 days a week interrupted by domestification Saturday morning.

Finally they opened my Starbucks 181.  I was excited till I walked thought the door. They removed the larger tables and put in smaller tables. They added more tables so there are virtually inches between tables. The tables are lined up in a row and not staggered so conversations with others are impossible. They also removed all the seats along the wall and put in one long (plank) wooden bench with no back. My Starbucks went from a community café to a cross between a McDonalds type fast food and a hospital or institutional coffee shop. The shop was changed to accommodate the profitable fast take out coffee. 


I renamed the store McBucks 181.

As I sat uncomfortably I was breathing in construction fumes. I told one of the barristers who told me her lungs hurt from breathing the air. I asked about opening the door, but that was against health code. I approached the manager who is a wonderful guy and he told me they were doing the construction at night so the store could remain open during the day. I left early with an incredible headache and nauseous from the fumes. I was enraged that they would keep the store open under those conditions. I wanted to call various NYC agencies and complain, but this was my second home and it wasn’t the staff’s fault. They were “following orders”.  If I had Starbucks stock, now would be time to sell.

I spent a nebulous few days trying to find a new home or get some work done, but was hopelessly lost and in a bad cycle. This was now affecting my whole being. My FTD che was interrupted and I was a mess. Positive attitude, mindset or meditating wasn’t helping. I wasn’t sleeping and my diet went to hell. No question about it, things were getting out of control with no relief in sight.

I spent another few days mulling around accomplishing nothing and then decided to return to McBucks 181 with a positive attitude to try and find comfort, accept the changes and get back to work. I went back and sat on one of the new chairs instead of the hard plank. I was determined to find my home again. It was crowded and noisy. There is barely anything in the store to absorb sound and my FTD hearing senses were reacting like chalk on a blackboard. Now a new noise added to hostile environment. Blaring music. I purposely sit on one side of 181 because they have the music playing loudly on the other side. The staff is behind the counter so they turn up the music on the other side to hear it. Now music was blasting on the other side where I resided. I was acoustically assaulted. I looked for the customer who was rudely blasting their laptop or other devise. The person responsible was about to be FTD’d. What I found was a 2^nd new large McBucks speaker blaring. I left in a state of disarray.  I’ve no idea what to do and what lies ahead in my future. I’m totally lost.

Yesterday, I only left my apartment because I knew a friend would be checking on me and making sure I was okay and got out. Otherwise I wouldn’t have moved. She did call and I told her I was lost and didn’t know what to do or where to go. She suggested I try the Starbucks on 145^th Street. It was 10 minutes by subway.

Guess what. Nirvana. I’m here at my new morning home, Starbucks 145. It’s wide open with spacious seating and acoustically friendly. The manager here Marlene, used to work at McBucks 181 and is a wonderful person. We just talked for a few minutes. They also have other 181 staff here.  I’m writing a blog for the first time in weeks and feel like I’ve found a new home. It’s 2 ½ miles from my apt, so on nice days I’ll walk. Thank God there’s life after McBucks 181. 

First 2 articles of a Forbes series on FTD and Patients.

Inside The Mind Of Frontotemporal Degeneration: A Patient's Story May 09, 2012

The Other Side of Frontotemporal Degeneration: Inside A Deteriorating Brain May 09, 2012

Howard

Forbes FTD article and Patient Series

First 2 articles of a Forbes series on FTD and Patients.

Inside The Mind Of Frontotemporal Degeneration: A Patient's Story May 09, 2012 The Other Side of Frontotemporal Degeneration: Inside A Deteriorating Brain May 09, 2012

Not a F___ing Word

Last week I flew for the first time in years and I decided I needed a strategy for dealing with airport security.

TSA and FTD are a natural clash. Of course it has nothing to do with the fact that they use the logic of a horseshoe trader and were tested and verified for their lack of common sense. It’s the FTD’ers responding to anything said with our brutal honesty with cavalier attitude which gets us quickly into trouble.

FTD’ers at a certain stage cannot keep their mouths shut.  It’s called incessant talking or nonstop chattering. I call it blabbering. My girlfriend turned to me a few weeks ago after a minor supermarket altercation and said, “I die a thousand deaths every time you open your mouth”. I’m excellent at getting myself quickly into trouble and equally adept at quickly stabilizing situations.

I decided to devise a strategy to keep me out of trouble with the TSA, since I’ve already had past issues. 

I came up with a mantra that I would keep repeating to myself.

(NAFW) - "Not a F___ing  Word”

No matter what happened I would continue to repeat this mantra to myself and hopefully stay out of trouble.

I arrived at LaGuardia at 6:45am Easter Day.  It was dead quiet with no line. I went directly to the ID checker and handed him the boarding pass and drivers license (NAFW). Made it.

Next stop conveyer belt and TSA gropers. I stripped down and placed everything on the belt. Then I entered the revolving door Xray machine (NAFW).  Made it. My stuff came though the other side. I had full toothpaste and deodorant etc. with me and fully expected them to be confiscated (NAFW). My toiletries made it without incident. My laptop wasn’t so lucky. TSA guy told me that my laptop needed to be run through separately. I nodded and smile (NAFW). TSA guy then took out my apple laptop, turned it upside down and dropped upside down 4-5 inches into a plastic bin (NAFW). I could barely contain myself, but made it.

The return flight didn’t go so smooth.

I was on the conveyer belt line when a flight crew politely asked to cut in front of me. (Of course) I told them. I had a half finished bottle of water in my bin, which I intended to fill up at the water fountain if it made it through security. I expected I had a 50-50 chance it wouldn’t be confiscated. I was secure with my mantra (NAFW). The flight attendant ahead of me had a partially finished bottle as well.  Her bottle went through unscathed; my bottles fate was to the derelict bin (NA__). I immediately said to TSA guy, “Why wasn’t her bottle confiscated?” His retort, “She’s a flight attendant”.

My FTD mind went right into action. Didn’t a pilot recently have a total breakdown and had to be removed from the aircraft restrained on a stretcher, as well as a flight attendant going into a lunatic rage before exiting through the emergency ramp.

(Not a F___ing Word)

I left quietly. No one except a fellow FTD’er would have any idea of the restraint it took to keep my mouth shut.

Howard

Kickstarter Final Numbers

Hi Everyone,

Final Kickstarter fundraiser numbers for "Howard's Brain". The goal was $20,000 and $23,117 was raised.

This was a total success. Thank you everyone for your global effort. Your hard work and donations made this a reality. This film will increase public awareness of FTD and help increase funds for an eventual cure.

Excuse me now while I leave Starbucks. I'm going home and passing out.

Love to all,

Howard

The Fat Lady's Singing

LAST DAY TO DONATE

Click link to see Trailer 

http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

The Fat Lady's Singing

I want to thank everyone for there efforts. At 11:55pm we crossed the over $20,000. 

This was done with a global community effort. There were separate groups online all working furiously trying to get donations. The people working together have 

There was of flurry cyberspace activity.

Hawaii, Israel, California, Mexico, Florida, Australia, Canada, England, New York and many other places were communicating over the internet.

Two people I know, one I haven't seen or spoken since the 70's, the other I was close with in the 80's were miles away from each other in distant state communicating and combining efforts. It was never discussed that either of them even personally knew me. The only thing discussed was different efforts to raise funds attain our goal and fight FTD.

I need to introduce those two.

One group had about 20 people from multiple countries planning, bantering, posting, tweeting, emailing and sending smoke signals.


When we crossed the 20k plateau, I started getting messages from people like the following,"Great, I can finally go to sleep".

Jennifer from "Dementia Today" tweeted over 700 
people and published an incredible article.
Please read
Howard's Brain
http://www.dementiatoday.com/?p=23590
Today is the final day to donate.
Thank you for allowing me to continue the fight against FTD through film.

Howard 

2 days left

LESS THAN 2 DAYS LEFT

Click link to see Trailer and donate!

http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

We reached $20,000 in pledged donations last night. 
I want to thank everyone for there donations. 
I appreciate the hard work that many of you put into networking,which got us over the edge. 


This film might be starring me, but it's really about the patients, caregivers, relatives, friends and all those devastated by FTD.


The mission of "Howard's Brain" film project is clear. Further public awareness and move us forward towards a cure. The Kickstarter fundraiser will be collecting donations for another 2 days. Pledge gifts such as "Special Thanks" in the films credits or other pledge gifts we be available till then. 


  
Thank you again,

Howard

FTD Blog Reaches 15,000 Visitors

click link to see trailer and donate!

http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

Please donate to "Howard's Brain" and help us further public awareness of FTD. The project will help with raising funds toward an eventual cure.

Special Thanks to AFTD for there generous donation.

*$50 donation receives "special thanks" in the films credits.

----------------------------------------------

My FTD Support Blog crossed over 15,000 visitors. 

Thank you so much for your support.

The blog is my base of operations. I started this venture 8 months ago. I remember celebrating after reaching 100 people. 

I started the blog to help those with FTD, as well as a way of saying thank you to the many people that've helped get me back on my feet. 

Since starting the blog I've also been involved in a number of other projects in the world of FTD. Some have been successful and others not.

The "Howard's Brain" film project has filmed over 100 hours and is in the production stage.  This documentary will not only further public awareness of FTD, but will give the medical community footage of someone with FTD going from one stage to the next. This will hopefully help in the treatment of others. I have dedicated my life to fighting FTD and am committed to filming as long as possible.

The other project I am proud of is the FTD Patient Support group. This private group is now up to 36 members. I started this group so there would be a comfortable place for people with FTD to go, as well as a good resource for accurate information. Little did I know when I started it, how much that group would be helping me. I am honored to be a member of the group, for the members are the bravest and most spirited people I've ever met. 


Though I like to try ignore the fact that my sidekick FTD is hanging out, FTD unfortunately hasn't been ignoring me. I've been finding it more difficult to function.


As many of you know, I don't have nor want a caregiver. The closest thing I have to a caregiver is AFTD, particularly Sharon Denny. AFTD and Sharon are there for me 7 days a week. 


AFTD is not only the worlds leading resource for accurate information on FTD, but there staff goes way out of there way for each person that contacts them. There more than just a nonprofit, there a source of comfort and backbone to many.


People write to me concerned of my future plans for long term care. There's not a lot of planning that can be done when your on public assistance and 63 cents a day in food stamps. I am comforted to know I have AFTD and NYC Riverstone (Memory Club) to help me in that transition. 

Howard