FTD and rewiring the brain

* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. Please email me at howardglickftd@gmail.com to join.

The FTD Patient Support Group has given immeasurable support to many. Through the group many have been able to find and receive better medical support,  friendship and a comfort of knowing there not alone with FTD. Many have met group members at get togethers outside the group.

A new segment will be added to the blog in September. This will be a feature article about one of the FTD'ers from the FTD Patient Support Group. The group has some incredibly amazing people from all walks of life that will be telling there stories. Each person and situation different. From those living with family, alone to those in Assisted Living at age 40 or 50. Courageous people living a life that's slipping away, yet refusing to give up and make the most of there lives. The FTD Patient Support Group has over 70 members from 10+ countries. We all share the same unfortunate common bond, FTD. The same disease that is stripping the essence of life, our brain is bringing us together to fight to keep our lives going in a happy, productive way.  

The purpose is to give family, friends and the public a view and better understanding of FTD and those inflicted with it.

The first feature FTD group member article will appear next week. 

Lost it this morning. I've been receiving calls each morning from 6:30 on lately. Recordings and hangups. Decided to call back through my caller ID. Turned out they were all from United Health. Of course they were sales calls. Of course they assured me they weren't selling anything. They could get me goods and services for free. Suuuurrrre, an insurance company making call after call to give away free services. The new not-for-profit insurance company. Somewhere over the rainbow. Of course after probing it turned out they could get me goods and services for free and bill the United States through loopholes. Guess it's not called profits when you can weasel money from Uncle Sam. In other words, increase the insurance companies profits and compile the national debt which will harm our children and grandchildren. But it won't cost me anything. 

Funny, I ranted and used language unbecoming to take me off there "not sales" call lists. Didn't care what they called there calls to justify calling me. Just take me off the F list and don't call me. 

Have been really trying to keep my language and behavior under control. Much of the confusion I've been experiencing since the move has yet to subside. Keep waiting for my brain to rewire and give me the time I need. Yes, the brain is a fighter. As we lose our brain to FTD, it keeps looking for outlets to rewire.  The brain does rewire. That's why we keep losing and regaining. Sort of drives caregivers and everyone else crazy. Once acceptance of losing a skill or action settles in, boom: the FTD'er is back acting or regaining what was thought lost. Many a time I hear of someone not talking or wheelchair bound. Without warning there talking or walking, sometimes after years of being docile. How long this fight goes on is different with each person. The brain is the most complicated part of the body. Medical science is in it's infancy of learning about the brain.

Feel like I've been pounded on for months. Have had less human contact, but more bureaucracy interaction. Need more rest, but I'm committed to doing what I can do while I can do it. I've a lot I want to accomplish. Picked up more memory cards so I can get back to filming "Howard's Brain" yesterday. Howard's Brain will use confusion and clarity or the brain at different moments. I'm deeply driven, just need some good old fashioned brain rewiring.

Howard

I just moved to Arizona. Any help in the way of Gift Certificates: Target, Costco, Walmart, Starbucks etc. or checks would be deeply appreciated. Or if you just want to write me a letter or a note, that would be nice. All letters with or without donation will be responded to. I am not starving, but can use some help. Those who can help, that would be appreciated. There's also a donation button on top right of this page. 


Howard Glick
7791 East Osborn Rd. Apt. 170E
Scottsdale, AZ 85251

Bankers and Cops

* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. Please email me at howardglickftd@gmail.com to join.

I'm alone in a new city alone with FTD. No friends, virtually no support. Just me and a keen desire to have a few good years of happiness and productivity.

NYC vs. Scottsdale, Arizona
Some have contacted me concerned about the monsoons.

Monsoon = Thunderstorm
Lions, tiger and bears. Oh my.

I love it here. The biggest thing that helps me cope with my FTDness is getting away from the overstimulation of NYC. The noise, crowds, supermarkets, subway, ambulances, gun shots kept me on edge. Here in Scottsdale it is slower, quieter. The Starbucks is wide open and not crowded.

Cost of living is much less expensive. Me, I'm still frightened to spend money. I'm okay but have zero grasp on my finances and banking. All I know is I've really no one to lean on, so if I fail I'm finished. My expenses are a used car and life stuff.

I had great bank support with Chase in Manhattan. Everyone in the branch knew me, my difficulties with FTD and went out of there way to help me. Went into the Chase bank close to my new home. Asked for the Branch Manager. Within a minute I was flanked by 4 Chaser's. All four including the branch manager looked like they barely passed through puberty. Told them I was from NYC, just moved here and had special banking needs due to a rare brain disease. I told them my bank in NYC was extremely helpful. Well guess what? I was FTDed. The 4 Chaser's went into where they were from, there lives, how long they were Chaser's. One from Chicago, one leaving next month. Every 30 seconds they would boast how well they take care of each customer and it's all about customer. I couldn't get a word in except when they asked me if I was a Jets or Giants fan. Was there about 20 minutes putting up with there non-stop incessant blabbering about how great they are and how they can help me. Then they all thanked me for coming and told me they looked forward to my business and fled. The Chaser's were gone. I sat by myself surveying the scene. Not one of them asked me what my special banking needs nor if I wanted to open an account there. I didn't even get to discuss FTD. Was God or the Universe trying to tell me something. If so, I've no idea what. Yes, pun intended. They Chase'd me out. I'll never walk in that Chase branch again.

Thank God for my friend Diana. Diana said find a bank by a comfortable restaurant or place you like to go. Well, right across the street was my new favorite Mexican restaurant which had 99 cent tacos. All was not lost. A happy ending. Like everything else the bank stuff will get done and be settled in the end.

Having FTD or any type of dementia is losing life skills. Things come and go. The need to relearn things is constant. Sometimes you can relearn and sometimes things are simply gone forever. I'm constantly trying to keep up with my FTD and find different ways to live with dementia and a dying mind. There simply aren't enough support groups and support for those with FTD. One reason I'm doing well is because of "Memory Club" which gave me the skills to live with early onset dementia. I also get tremendous support from the group I set up, "The FTD Patient Support Group". FTD is a wicked disease and absolutely no one has a crystal ball to how fast the progression and death will be, but I guarantee that with earlier, better support for the FTD'er. Everyone's life will be easier.

I've not had a blowout since I've moved here. A combination of being less overwhelmed and not around people that much. Am taking things slower with lots of rest time. Had a task to take on. Needed a new TV stand/entertainment center. Of course it comes in a million pieces and werghs over 100 pounds. Following directions and putting it together is not like the days of old or the days of beginner FTD dementia. I keep trying to adapt. Pre-FTD I'd whip it together without even looking at the manual.  With FTD/dementia the instructions make no sense and to try and follow the instructions would lead to a tantrum and me smashing things.

The stand was delivered and I let it sit there leaning against the wall for a couple of days. Secretly planning in my head how this was going to get done. First of all, "Anything that can go wrong, will go wrong". Mentally, I'm prepared to having to do it over and over again. I will not flip out when I screw it up. I'll keep reversing until correct and then proceed. Big secret. Never, never screw in screws all the way till the very end. Yes, easy to write this shit ,but the end justifies the means. I'll arrange everything out on the floor in separate piles and put it together following the diagram, not the instructions. Follow the picture to see length and positioning. Use FTD certifiable GPS to make sure it is centered properly in the room.

My living room 

Miss my friends. Miss having really smart people around me. One of my friends in NY was perhaps the smartest person I've ever met. She'd keep in the loop with my FTDness and kept me from drifting toward's trouble or at least told me when I was in trouble and didn't know it.

Got a call from my NYC pharmacy yesterday. I'm late picking up my prescriptions. The hits just keep on coming. Went from my 99 cent Taco to Walmart. Planet Walmart is new to me. There are none in NYC. Walmart and it's Walmartian inhabitation is a strange, new FTDish experience. I go to stores in the middle of weekdays. Close to empty stores keeps my FTD anxiety at bay and I sometimes make it through without running out empty-handed or FTDing some poor soul. Gave the Pharmacy Walmartian my NYC refill info. He said something unintelligible about day or days. Thanked him profusely. Felt like I was in one of the, "Men in Black" movies. Got out while I could.

Met a really nice person a couple of times at Starbucks. We've sat and talked on her days off.   Besides normal banter and me deluging her with my non-stop FTD rant. She's is helping me with tips on local driving, bad local driver habits (running red lights)etc, dangerous intersections, laws etc. Her expertise is accident investigations. We talked about my FTD and driving. I told her of my precautions and many concerns with FTD/dementia drivers. From a law enforcement point of view, if I could follow the laws, then I've a right to drive. A real nice person with a serious, fun edge about her. Lisa is looking forward to retiring in May from the Scottsdale Police Department.

One day at a time. I'm slowly getting settled and each day get a bit more done. Cancelled my NYC Medicare Health plan and just got a new Arizona Medicare Health plan. Crisis management till open enrollment starts in October. Have to find docs. One day at a time. Lots of breaks. Doing Great!

Howard

I just moved to Arizona. Any help in the way of Gift Certificates: Target, Costco, Walmart, Starbucks etc. or checks would be deeply appreciated. Or if you just want to write me a letter or a note, that would be nice. I am not starving. Those who can help that would be appreciated. There's also a donation button on top right of this page.

Howard Glick
7791 East Osborn Rd. Apt. 170E
Scottsdale, AZ 85251

Sunday Morning

* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. Please email me at howardglickftd@gmail.com to join.

Have been here in Arizona for less than 2 weeks. Love Scottsdale and hate FTD. I really don't like the me that's me anymore.

Speaking to my friend Marc last week he was telling me about the 3 Howard's. There was the Howard(1) pre-illness who was the Howard he grew up with since 5 years old. 40 years later at 45 the Howard he knew got sick. Quick and devastating, nobody knew what happened. Howard (2)  6+ years of up to 17 pills a day, 100 ECT's, in and out of hospitals, psych wards as well as experimental surgery. Marc and others thought I was gone forever. Then a suicide attempt, coma, 7 weeks in a psych ward being weeded off all the meds and what was left. Howard (3) or FTD Howard.

I feel like what's left is a shell of who I used to be. A year after FTD diagnosis everyone kept telling me I never talked about anyone but myself, never ask about anyone else, never say thank you. The woman I was seeing routinely got up and walked out on me after listening to tiresome rant of me and my life and never asking about her. Today, I make it a point to constantly be gracious, say thank you, ask others how they are and show appreciation for everything in life. Am I being a phony? Do I really care? Yes, I can honestly say that I think and care of others but just don't show it unless I prompt myself. Was discussing this with a fellow FTD'er a couple of weeks ago. She felt she was disregarding her husband and family. In the end, she realized she cared, just wasn't showing it in a normal sense.

FTD'ers and caregivers are drilled about apathy. We care, it's just a different type of caring. It also is difficult because often we're labeled by the medical community who of course can't be wrong. Keep eating pizza and you will get fat. As I said we still care and love, it's just shown differently.

Love, yes I love but it's different. Instead of heartfelt it's intellectual. It's no longer a bundle of feelings. I love a person for who and what they are.  What they do or strive to do.

Have been getting friendly with someone here in Scottsdale. Was going to ask her out on a date. In our latest conversation it was disclosed that she's in her senior year of college. Mid 20's, what the hell is wrong with me. Never even thought about her age. Knew she was youngish, but didn't care. My daughters age. FTD sucks.

Have been very low key since moving here. I can't help having FTD or it's progression, but I can fight like hell to accomplish what I want. My priority here is continuing this blog and my FTD advocacy/awareness work. That is getting done. Am gearing up to continue my book September 1st after a long hiatus. Have an editor for when it's done and have gotten excellent advise from friends. Everything's going to go into it and then at the end things can be taken out if need be.

I'm missing the support I had in NYC. Every day something happens that makes me realize and appreciate the help I had. My banking is a mess. I've absolutely no idea what I'm doing, what I have and how to set up payments or take care of accounts. My second priority this week is finding a banker to help me. Mathew, the VP of Chase used to help me so much in NYC. I totally admit I'm lost right now. Have no idea where I am financially, but know I've taken action and cut my expenses way down by leaving my home and moving to Arizona. Hey, what I'm doing may not always be rational, but I'm trying and it makes sense to me.

The first priority this week I can't remember right now, but it's important.

Ah, first priority this week is my health. Chest pains continue to get worse so I need to find a cardiologist & GP alined with a local hospital before I pop out. To much to accomplish to die right now. Have had a heart attack, 3 stents and cancer to accommodate my FTD. Might need a valve or lube job. *I've not had a slice of pizza since I entered the state of Arizona. Haven't even thought about that till now. Haven't been to the gym,nor eating right. No kudos for FTD Howard.

Thank you everyone who has sent me gift cards and checks. It is deeply appreciated. Received a beautiful letter along with a check from someone from Texas. Normally, I would send a "Howard's Brain" thank you card. Well, my box of "Howard's Brain" cards, stamps and postcards are gone. Another casualty of Uhaul.

Arizona ALFA - Assisted Living Federation of America has really stepped up and helped me with a new microwave, tools etc. Really grateful here. Thank you all so much.

Heading back to my apartment. 10:30am Arizona time and I'm done for the day. Wiped out. FTD sucks. Sorry if this blog isn't lucid. Just needed to write this morning and keep going. 

Howard


I just moved to Arizona. Any help in the way of Gift Certificates: Target, Costco, Walmart, Starbucks etc. or checks would be deeply appreciated. Or if you just want to write me a letter or a note, that would be nice. There's also a donation button on top right of this page.

Howard Glick
7791 East Osborn Rd. Apt. 170E
Scottsdale, AZ 85251

Drivers License "Not Eligible"

Found out yesterday that I was awarded a "Blog of the Year Award for 2013. Finished Number 8 out of 25 awarded. Thank you Healthline for bestowing that honor on me. I've been blessed to be able to forge on with this Blog, the FTD Patient Support Group I created and "Howard's Brain" documentary now filming.

Howard Glick's the name. FTD Awareness the Game

85,000 served and growing

FTD/Dementia Support Group

Frontotemporal dementia may be rare, but its effects are a major part of blogger Howard’s life. In his struggle to adapt to life with his condition, he gave the rest of the dementia community a wonderful gift: the FTD/Dementia Support Group.
This online support network is full of personal reflections and documentation of Howard’s attempt to lead by example. His belief that life is what he will make of it and his firm commitment to finding happiness and health despite his illness make this blog a must-read.

Healthline 25 Best Alzheimers Blogs

______________________________________________________

Driving and FTD.  Everyone has an opinion. Every state has different laws regarding driving and disabilities. I've always been an excellent driver and still am excellent driver even with FTD. I take my driving privilege seriously and take many precautions. Vehicle usage is to get to Starbucks and store shopping. I've also been driving in NYC for years since I was diagnosed without incident. My doc's know I drive. No ones thrilled, but they understand. I will make sure I have adequate support around me so when the time comes to hang up my keys, I will.

Went to the Phoenix DMV - Department of Motor Vehicles to get my NYC driving license switched over to an Arizona driving license. Having researched it, it seemed like a painless procedure. $10, no eye check or any other exam and then I would be entitled to an Arizona drivers license that would be good for 10 years or till I'm 65 years old. Of course I had to wait the obligatory 1 1/2 hours. Though I wasn't anticipating any problems, I seem to have a black FTD cloud hovering over me as said so eloquently said by an FTD'er friend of mine. Gave the clerk my birth certificate and ID.

One minute later the, "Houston we have a problem" look came my way. The DMV clerk asked me if I recently had my license suspended or revoked. DUI etc. New York State DMV had sent her the message, "Not Eligible" for a new license. She gave me the, you must know what's going on look. My thought, "I've been FTD'ed". How? Who? Clerk lady told me I needed to call NYS DMV and gave me the paper with the case number on it.

"Next" and I was gone. I stood there in shock flabbergasted. I called the NYS DMV number.
The recording:
Press 1 for suspensions and revocations
Press 2  for......
Press 3 for medical suspensions (vision), appeals.

 "Shit, FTD, I'm so Fucked"

Here I am in Arizona, state that prides itself on personal liberties. I can get a gun, but not a drivers license. Actually it's blocked by New York State so maybe I could go through the process of obtaining a license from scratch in AZ. My mind is racing a million miles a minute. 

The recording said the office was closed and was open Mon-Fri 8:30am -12:30pm.

Horror - I just got a car and moved to Scottsdale, AZ. Temperature outside 100-118 degrees every day. I need a car. What happened, was it a cabal of feeding frenzied caregivers from one of the support groups I belong to believing I shouldn't drive? One of the Power of Attorney's I fired who were against me driving? A rogue criminal who pretends to be people to mess up peoples lives who surfaces time to time to fuck me? Maybe a new covert unit of Government, the FTD Police out to coral rogue FTD'ers.

Hey, I understand irrational thought being partially brainless and having my own quips. I was in 2 major accidents because of people and there cell phones. Just like Mother's Against Drunk Driver's wants castration for DUI offenses, I want all cell communication jammed when the car engine goes on. 

Nothing I could do till the next morning so I took action and did the most logical thing I could think of. Got drunk off my ass. 

The next morning at 5:35am, 8:35am New York time I was toggling through the choices. After what felt like hours I got through to a sweet New Yorker. Took about 5 minutes for sweetness to look me up and said the good news was she couldn't help me. She dealt with revocations, suspensions and hard core cases. She didn't know what was up with me, but she'd transfer me. Okay, I'm thinking. Just a little FTD here. I'm so Fucked. 

Now I was transferred to an extremely official man. I was waiting to hear, "Mr. Howard Glick, this is Captain James T. Kirk and I'm here to inform you that your FTD run is over. As we speak your vehicle is being towed and impounded. Your license is permanently revoked and outside your door is an entourage. You will be escorted to a secure dementia facility for the remainder of your days". Hotel California. You can check in, but you can never leave.

In fact, that is as surreal as the reality that was about to happen. 

Mr. Official said, "Mr. Glick, you were flagged by Homeland Security. The investigation revealed a past impropriety.   

I'm Aware that I'm not Aware

Okay lets see if I can put this together. My severe anxiety attack and near heart failure for being deemed "Not Eligible" for an Arizona drivers license had nothing to do with me having FTD. It had to do with me being investigated by Homeland Security as a national security risk because I'm moving from New York to Arizona and am requesting an out of state license. That makes sense.

Mr. Official went on to explain Homeland Security is now monitoring people moving state to state and acquiring licenses. "Mr. Glick, you were flagged and a subsequent investigation revealed an  uninsured vehicle incident in 1978." 

35 years ago in 1978 I had a motorcycle accident on the NYS Thruway on the way to New England College. This is what all the fuss is about. (What - No FTD Police? No secure dementia facility?)
  

Israeli army. Lebanon 1982

Mr Official, "Mr. Glick, you'll have to pay a $300 fine by certified check to NYS DMV for the 1978 driving an uninsured vehicle infraction. It will take 6-8 weeks after payment is made and you'll be cleared by Homeland Security and NYS DMV to receive a new out of state Arizona license."

Who would ever believe the George Bush Patriot Act would ever be used for something other than catching bad guys. Thank God it isn't being used to go after a rogue FTD'er like me.

You can't make this shit up.

Howard

I just moved to Arizona. Any help in the way of Gift Certificates: Target, Costco, Walmart, Starbucks etc. or checks would be deeply appreciated. Or if you just want to write me a letter or a note, that would be nice.

Howard Glick
7791 East Osborn Rd. Apt. 170E
Scottsdale, AZ 85251

Death of the death suit

Part of "end of life" planning is a death suit. When I was moving from NYC I was giving away a lot of stuff, including all my suits. I was lucky enough to have my suits tailored in Thailand. Pre-FTD success that now just seems like superficial toys and things. Had my own tailor, Prince who owned the shop "Bogies" which I would stop in at in the beginning of any trip to SE Asia, go through swatches and pick up my clothes before my return flight from Bangkok.

My friend Steve reminded me I needed to take one last suit to Arizona. Ah, the end of life kick the bucket suit. But I gained weight. No problem Steve assured me, they cut the back open for fatties like me. Thank God for friends.

The Prince and I

Steve and I

Now I'm in a panic situation here in Arizona. Besides my furniture not making it cross country, many of my boxes mysteriously disappeared. One of them contained my "Death Suit." Living with FTD just gets rougher all the time. Now death even has to be delayed. Can't die without a death suit.

As expected, half my glassware is broken. Haven't opened my pictures yet, but the TV works. Us FTD'ers need TV to phase out into our comatose state. We watch, but don't follow. Our attention span can't focus on anything for more than a few moments. That and it's impossible to keep track of any subplots. Scene/cast switch and us FTD'ers are history. 

As previously stated, many boxes including the heaviest one marked "liquids kitchen" are gone. That one had dishwasher liquid, Tide, Downy and all the cleanser liquids. Many were Costco size. Expensive box. Maybe someone thought that had Alcohol in it. May they drink bleach and cleanse their soul. I'm not sure what other boxes are gone except certain items are missing including my Apple TV. Apple TV is a little control box that enables you to watch Netflix. Guess I'm now Netflix unenabled. Shit happens.   

Each day I'm unloading and organizing more and more. Kitchen's a total disaster. Just might close that area off with a Hazardous Material sign. I still have no idea what to put where. It's going to take a while, but I've time. After all my death suit is gone, so I'm not going anywhere. 

Guess what I found underneath a bunch of clothes on the couch. Death Suit. Well, still not planning on going anywhere. 

Howard

Losing it a Bit

I've noticed a chunk of armor is missing from me. The move and especially the debacle with Uhaul has taken a bit out of me. To talk or communicate with the employees is like speaking to the "Stepford Wives". Big smiles and everything is wonderful, timely and perfect. No matter what you say it's the same response and attitude. Everything's fine.

Well things were not fine. I kept calling Uhaul and getting the runaround. I keep hearing from them that  it will be here and I will get an email and a call. Of course I heard nothing back. It's like a continuation of the NYC nightmare. I admit it, I'm fried and can't deal with Uhaul anymore. I've been in confused sort of state and haven't been able to shake it. A friend of mine from my FTD patient support group Darla offered to help on Thursday. Darla got right on the case making calls all over the country and speaking to people at different levels of Uhaul management. For a while no one could find my stuff. Then I heard it just left NYC Wednesday and was on the road. Finally, late Thursday it was discovered that my pod was in storage in Phoenix for the last couple of days. Crazy. Darla'a 15+ calls netted results and within 24 hours of Darla on the case, my Pod was outside my door. I was instantly able to hire movers who were here in an hour.

These guys were not like the NYC crew who didn't have a clue at what they were doing. 90 minutes later everything was in my apartment. That includes going up a flight of stairs. It didn't start of easy. When they opened the door stuff came piling out. Throughout the move they kept commenting what a terrible job the loaders had done. Easy to see why. This is what the inside of the Pod looked like.

What a wonderful packing job the NYC crew did. My picture boxes and TV are flat and piled up on top of each other. Wonderful.

On the flip side the Arizona crew flew through the job in 109 degree heat. I kept the water bottles coming. I can't say enough how well Fast Man Movers performed. If you have a Phoenix area job, these guys are it.

Went into a sort of crazed unpacking state yesterday for hours. My couch is missing a leg and beat up from being dragged on the NYC pavement, more than half of my glassware and dishes are broken but I was able to sleep on my bed last night. Don't have a chair or dresser and my clothes are in a big pile, but so what. It will get sorted out in time. The wonderful people from Arizona ALFA Assisted Living Federation of America have been in contact and have a kitchen table and some other stuff for me. That will really help.

Was doing pretty good till I realized I spent almost 2 hours in confusion in the kitchen. Couldn't decide where to put all the items and kept reshuffling the same stuff for hours. Realized I just could not organize anything or figure out where to put stuff. Things are strewn all over the kitchen. Finally realized I was going in circles and quit for the night. Hopefully I'll meet someone here to help me organize a bit. It's tough. Could really use a woman's touch. Wish I had a Sheila or another creative decorator to help me.

I now have music and a bed. Life is beautiful. Haven't opened a picture box yet. Think I'll wait on that. Have moved them and haven't heard glass. Hoping to be lucky.

Have been in Scottsdale, AZ 5 days now and am settling in. Need to rest a bit more and I'm hoping to I'll be less confused and back to the FTD feeling of old. Things are slower paced here and that's working out fine for me.

Love my used Mini Cooper and am driving just a few miles a day. I had special brighter headlight bulbs installed at an auto parts dealer. Part of the be safe driving with FTD plan. Of course I rattled off my FTD schpeil to the grease guy. I was shocked that he knew what FTD was. In NY fucking City I never ran into one person who knew FTD and here in Scottsdale, AZ it took a couple of days. Turned out he was tested for FTD, but finally diagnosed with Aspergers. Nice guy.

I'm on track to do exactly what I'm here to accomplish. (could someone please tell me what that is :-) )

Next in line getting new docs. Cardiologist first. Might need another cut and paste job in the near future.

Howard

FTD and Decision Making

We all make choices in life. We determine what the best possible path is and then we take it or we don't. If we don't take it it's because it's to damn hard or we're letting fear dictate to us. About ten years ago FTD symptoms began flourishing and my life began spiraled out of control. I lost everything a person can possibly lose. Even lost my will to live and attempted suicide. Failed miserably at that so I'm still hanging around.

Today I've a life to live. Nothing I could have imagined, but I dictate my life with FTD. Oh yea, I can fail miserably like the Uhaul move. I can also succeed wildly, like the Colorado trip. 

Because of the screw up move, I'm in my apartment with an airbag and some towels. My biggest fear moving into my apartment with nothing was getting out of the shower dripping with no way to dry myself. Been ruminating about that for a couple of weeks. Couldn't buy a towel because I've plenty packed. Can't waste the money so I've just been ruminating about dripping and air drying. Thank you FTD. Relief came in the way of my FTD friend Max in Colorado. I told her my fear and she gave me some towels for the road. Hence the fact that I'm now typing instead of drip drying. Sort of flooded the bathroom a bit this morning. No shower curtain or even a rod up :-)

Spent hours yesterday just trying to get electricity. All screwed up but in the end I got it. Will have internet some day when my stuff arrives and I can figure out how to set it up.

Last week a wonderful neighbor of mine Joseph wanted to round up witness neighbors and go to Uhaul and demand a refund. Yes, I FTD'ed the move, but only after the Uhaul movers I hired totally screwed it up. Joseph kept following up and calling and calling. He saw the whole debacle and wanted to help me. I couldn't fight that battle. I had time constraint and needed to get the new camera Joe Becker sent me before the Colorado trip. My decision was long term for "Howard's Brain".  Right now my apartment is empty and I need to purchase so much daily stuff. I honestly have no idea how my finances are right now. I know my expenses are much lower here in AZ but I lost my safety net whatever that is or was. I was lucky enough to have help from many of you and my mom who stepped up to the plate, but I guess my life is and always be walking the tightrope. All I know is I've a roof, a nice empty apartment, a used mini cooper to putt putt around. I picked that up yesterday straight from the airport. How exciting is that. I get to drive a few miles a day in a cool little car. Yes I'm thrilled and feel I deserve a bit of good shit in life.  I also have some friends at Arizona ALFA - Assisted Living Federation of American who will help me out a bit. I'm hoping to accomplish a lot here in the way of FTD advocacy. Just need a bit of direction and help. They might be able to help me out with some apt stuff from connections. Just about everything I had in the way of furniture is in NYC. 

Was just staring at this incredibly dressed western Arizonian beauty here in my new Scottsdale Starbucks haunt. She caught me more than once checking her out and smiled.  Wedding Band on. On the way out I stopped her and told her, "you look great". She took my hand and squeezed it and lit up a beautiful smile. Think we made each others day. This Starbucks is a half mile from my home. Woman in tight workout outfits in and out all morning. Must be close to a gym. Recipe for disaster for me and FTD :-)

Made my decision to get the camera set up, make the Colorado trip and forgo the battle with Uhaul.

So did I make the right decision. Met some of my friends from my FTD Patient Support Group. What great people and a great trip. Spend the first few days with Brenda and her family. Still am not sure if I made the right decision in leaving. Should've just stayed there and lived a happy life with Brenda and her family. 

Also met Max and many Colorado FTD'ers and 5 of us had a great get together and meeting in an Assisted Living facility in Denver. Filmed the whole thing. In fact, I've filmed about 12 FTD hours since leaving NYC. Most of it quality filming with FTD'er friends and there caregivers. Why is this important? "Howard's Brain" is about all of our struggling FTD family. "Howard's Brain" is not about Howard Glick, it's about how FTD rips apart and ruins the lives of patients, families and all those associated with FTD. Was with a patient Brenda last week who went to a neurologist to get 2nd opinion on FTD. The neurologist didn't even know what FTD was. How fucking enraging is that.

My hope is one day Joe Becker will make a spectacular film and when people hear the FTD, they won't think of a stupid fucking flower delivery company, they'll think of devastated families and lives and strive to find a cure. We've filmed way over 200 hours at this point.

So what is important to Howard Glick? Trying to get back Uhaul money for a fucked up move or using my limited resources to get my camera working right, getting to Colorado to meet people who I have a common bond with and get filming done which I hope one day will make the difference in many peoples lives. No brainer for this partial brained FTD'er.

Ive an apartment with nothing in it. Big deal.  Have good TV's and a nice putt putt car. Life is beautiful.

Am on my way to my first ever life time visit to Walmart. Can't even describe all the little shit I need.

Some of you have mentioned sending me gift cards to stores of living stuff. Costco, Walmart, Home Depot, Lowes, Fry's, Home Goods whatever. If you want, I could use a little help rebuilding. Just know that no matter what happens, I will keep advocating and kicking FTD ass till there's nothing left of me. 

Hey, just a letter would be nice as well. Just a little bit alone and lonely here.

I apologize to all that I've not been able to get back to lately. Thanks for your support and it will take me a while to catch up with myself. I owe many of you calls and responses. Am barely keeping up with myself, but I will catch up in a couple of weeks.

I don't have an easy life and I don't want one either. I'm perfectly happy chugging alone and doing what I'm doing.

Thanks and love you all,

Howard Glick
7791 East Osbourne Rd. apt 170E
Scottsdale, AZ 85251 

Rocking on in Colorado

Sitting here overlooking the Colorado Rockies life is wonderful. Last night Brenda, her husband and friends were all jamming. Brenda now has the number one hit in the valley. Months ago when Brenda sent me a letter requesting she join the FTD Support Group I did my usual vetting process. Yep, I'm an asshole and since it's a life to death membership I make sure everyone is a legitimate FTD'er. At least as much as I can since the even the medical community uses a weegi board to sometimes decide a diagnosis. Had one person want to join to bloodlet everyone as a possible means to a cure. Okee dokee.

Brenda seemed like the real deal and had as firm as diagnosis as possible without me seeing autopsy results. I found Brenda's artwork online in a gallery. It was amazing. I was shocked to learn that she only started painting a year ago. We spoke yesterday about the FTD art program that they had at UCSF. Many with FTD gain artistic expression as they lose executive functions. 

Been nice spending some days with Brenda, her husband Chris and the 15 year old twins. Like all FTD families, they've been through there hell and gearing up for the future. What an incredible loving and understanding family they are. They all know what's going on and what there facing and making the most of it. Positive attitude and keep chugging along. They moved about a month ago from Chicago to a massive beautiful house in the rockies. Guess I'm sort of on the run to. Big cities and FTD don't mix.

This trip is really making me miss my 2 children, Myles 15 and Chelsea 19. It's a deep void in me now. I'll be much closer in Arizona, so I'm planning on seeing them a lot more.

When you have a rare disease like FTD, it's so comforting meeting others that are going through what you are. It was definitively a comfort to Brenda, me and the rest of the family. Brenda's husband Chris and there daughter found many behavioral similarities that we share. There's always common bonds between FTD'ers. We've been talking for days. Guess I've a bit of experience so I usually have a few helpful suggestions.

Like just about every FTD'er, there's stories behind stories. Brenda went to a neurologist to get a second opinion on her FTD diagnosis. The neurologist never heard of FTD. I'm never ceased to be amazed on the lack of awareness of FTD by people that should know. Brenda got some good recommendations from our Denver FTD'ers of an experienced FTD neurologist in Denver. I'll also be getting her information on the UCSF program.

Massive fireplace

Being an organized FTD'er. I ordered an air mattress for my new Arizona apartment. Checked on it last night to see if it would get there on time. Due to arrive at my NYC apartment Monday. LOL. Have to love it when a plan comes together.

So nice not to hear honking horns, car alarms, ambulances and police cars. So quiet here. Miss my friends.

Will be picked up by some FTD'ers in a couple of hours and off I go to Denver. Can't wait to meet this group that I've been in contact with and so close for so long.

Howard

* BTW - The blank SD Cards for the camera I lost. Well, after searching my bags 5-10 times. Ripping them apart, I found them. Another FTD'er success story.

NYC Departure

My last few days in NYC were a blur. Running around the city trying to get tasks done. Picked up the new camera. Tried to set it up by myself with the instruction manual. After 10 minutes I realized it was shades of yesteryear. Couldn't set up the old one, so why the new one. The boys at B&H Photo are always up to the task. I took it down and they got it done. They also sold me some new disks for the new camera.

Then it was time to run uptown with the full disks to UPS them to the filmmaker. In the morning I couldn't figure out what was what. I had 3 full ones, but four disks. Who's on first, What's on second and I've no idea what the fuck is on disk 3 or 4. I tried looking at them in my Mac, but forgot how to open the files. 10 minutes later I realized my blood pressure was spiking. Wasn't to many years ago I was teaching Photoshop and Pagemaker and now it's FTD Howard. Was also upset because I couldn't find the GPS I bought for Arizona. Don't know if I shipped it, left it or lost it.

Now I'm to head uptown from B&H Photo to UPS except I realized that UPS doesn't ship on the weekends. I had to be on that street on Monday, so I could drop it off then. So what does Howard do? I travel the half hour plus out of my way to go to UPS. It's closed on Sunday. No shit. But I already knew it couldn't ship or was closed. I went out to have lunch and sat there blank. Just sat there so down in the dumps. Events were controlling me and I wasn't on top of anything. I realized that pesky parasite I call depression was hovering like a mosquito that needed swatting. Sorry, no time or room for depression. Depression is the No. 1 enemy for those with FTD or any type of dementia. I choose to fight the pesky parasite by trying to keep to a routine or push myself out of the ruminating thoughts which lead to self destruction. No magic pills for me. Seen that movie and don't like it. Only pills I take is for blood pressure and heart. I totally admit I'm way out of wack right now. Have been in Colorado for a couple of days now and I haven't started to recover yet. I still have no idea why I went to the UPS store and I don't care. Moving on and not looking back.

I've had calls from people who witnessed the Uhaul debacle in NYC. They've wanted to help me try and get some of my money back. There were plenty of witnesses to the incompetence of the the movers that caused the disaster. I could use the money but I'm dead tired and need to pick my battles. Joseph has been trying to help me with and going way out of his way wanted to go up to Uhaul with me and others Sunday. I told him I had to choose getting the new camera set up downtown and get the filming on track. I just don't have a Uhaul battle in me and need to look forward as what is the most productive use of my energy and time. Sometimes you just have to let things go. 

My final NYC Saturday night my friends Sheila and Steve threw a farewell party for me. There were about 20 people there. It was a wonderful send off. The party was just what I needed having the UPS debacle and living a life rifled in confusion for who knows how long now. Spent my last 6 days in NYC at Steve and Sheila's. It was wonderful being with close friends who can put up with my FTDness. 

A fun twist off of, "I'm aware, that I'm not aware"

Doc Laurie was sweet enough to give me a lift to the airport. Brought me coffee and croissant's. On the plane some jerk in front of me opened a beer and started arguing while we were taxiing. Captain got involved and declared, "your not flying on my aircraft." We turned back and disposed of the despicable, unruly passenger LOL Sucker. Laughing because as I was watching this unfold I'm thinking that could easily be me and FTD be booted off. NAFW = Not a Fucking Word baby. My travel Mantra.

I was engulfed in mass confusion my last few days in NYC. Now I'm sitting here in Colorado and just filled a memory card of the camera. So of course I spent a half hour ripping apart my bags looking for one of the new ones I purchased. I didn't find the memory cards, but I did find my GPS hidden in clothing. Score!  I've an extra memory card in the camera so I'm rocking and rolling. I'm sure I'll find the others. I don't recover like I used to. As long as I can snap back a bit, I'll be okay.


Brenda and family have been incredible hospitable. We're in Crestone, which is an hour from Alamosa, Co. Got here by puddle jumper which was a wild ride going through a storm in the rockies.

I'm now sitting here 8,000 feet up looking out at the Colorado Rockies. I'm lucky to be the guest of Brenda a fellow FTD'er, her husband Chris, the twins and  106 lb. Dresden who is pictured below. What a wonderful family. It was really sweet for them to invite me to stay with them while I was having a travel void with no where to be. Having FTD and spending time with someone else that shares your struggles is a powerful cathartic bond. A common bond with a rare disease almost no one understands or gets. Meetings and get togethers are one of the larger than life impacts the FTD Patient Support Group I created have initiated. Guess I'm doing something with my life besides being a nuisance. There still is so little support for FTD Patients, but it's improving. AFTD has also started group phone conference calls with FTD Patients. 

I'll be here for a few more days of R&R then picked up and shuttled by some FTD friends of mine to Denver for  get togethers etc.

Spoke with the car dealership. When I land in Phoenix on Monday they will pick me up at the airport and bring me straight to the dealership where I'll pick up my new used Mini Cooper. I'm really excited. Heard from Uhaul. My stuff won't be delivered till Thursday. So I'm still not in a perfect world. Guess I'll get a sleeping bag for a few days :-)

Have received more supportive letters from my ALFA friends in AZ. That's huge for me. Just need a little bit of help.

Doing great here, but still totally exhausted. 

Howard