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