FTD and Inappropriate Behavior

 “Vote for FTD/Dementia Support Blog in Healthline’s Best Blog Contest.  Find my blog on page 9 of the Alphabetical list:

Contest (click) - Please Vote and help FTD Awareness!!! 

You can vote Once a day. Please vote each time you visit this blog.

* 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. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard

A few days ago I was at my original Starbucks and was hanging around with some of my cronies. One guy out of the blue told me he's read my blog. Declared I'm high functioning, he knows dementia and I'm not a fair representative. His manner was rude and challenging. I didn't bite. Been there, seen this movie before. I looked at him and the theme from the movie "Deliverance" popped into my head. He could've starred in the movie the way he kept himself. This is something everyone in the FTD world is familiar with. Yes, I consider myself high functioning, but have FTD and I'm going through the dementing process. Yes, I'm slowly losing my mind. Things are constantly getting more difficult and they will never get easier. There's many reasons many with FTD isolate themselves and stay away from people.  It's hard to convey the hurt people with FTD go through when treated this way. You get treated like a child by family, many friends disappear or don't know how to deal with you. Everyone with Dementia has heard, "Oh yea, I forget things to. Ha ha. I must have Dementia to." There's no words to describe the incredible frustration and hurt these words cause to all that suffer dementia. We usually just stand there grinning sheepishly. What else can we do. People just don't get what it's like to be functional and then start losing your mind. There are no meds, there is no reversing it. One way trip baby. To be fair, the people that say, "I forgot that, therefore I……... are well intentioned. There just not sure what to say. If your reading this, I'm making you aware. Don't say it, it's inappropriate and hurts anyone with any type of dementia. 

Spoke with one of my NYC doc friends who quickly nicknamed him Swamp Guy after I described him. I laughed, that's him. 

I went silent after Swamp Guy said that to me. Though his dress and mannerisms are consistent of someone who lives in a swamp, by profession he is a nurse. I had a bit of  PTSD. Memories flooded of a visiting nurse back in NYC. I was freshly diagnosed and had a home nurse visit. The nurse had a translator. She had a strong foreign accent and the translator was to translate her language into Spanish for other clients. The nurse spoke broken english. I tried to explain FTD to her for the longest time. Like 98% of the people in the medical community, she'd never heard of FTD. She looked at me and said, "I smart, I masters ". Guess she was trying to tell me she was well educated. Okay, whatever. She then went on, "I know Dementia, you no Dementia".  The translator looked horrified how Idiot Nurse was talking to me. I was speaking slowly and really trying to explain. Enough, I stood and told both Idiot Nurse and translator to pick up there shit and get the fuck out of my apartment. I was yelling at Idiot Nurse the whole way out the door. Like all professions you've fools who've limited knowledge. I commend Swamp Guy on the profession he haas chosen, unfortunately, having a bit of knowledge does not entitle you to be an ignorant rude fool going through life like the Tin Man before he received his brains. The way Swamp Guy carries himself and acts, he's an absolute disgrace to the medical community for which I've much respect. Swamp guy, If your reading this I've always liked you. Still like you with your inappropriate behavior and by the way, Fuck You!

I do need to thank Swamp Guy. Looking at him, made me want to look good. Having lost 43 pounds I now fit into my old wardrobe of nice shirts and clothing. I'm now putting on nice clothes each day as part of my routine. I'm going to continue to control what I can for as long as I can and bust my butt to live a happy, purposeful life. Thanks to Swamp Guy I'm looking good. So, thank you Swamp Guy and by the way, Fuck You!  

Today is a milestone. First time since I've moved to Arizona I've broken my routine and not gone to Starbucks by my apt. 7 days a week, every week. Haven't missed a day missed. Have been stifled by unproductively as of late and needed to make a change. Living successfully with FTD/Dementia for as long as you can is routine, exercise, minimal stress and lady luck on progression. I do everything I can to stack the odds in my favor and stick to my routine. My favorite place on the planet is Sedona, AZ a short distance, yet I've yet to break my routine and leave the Phoenix area or my morning routine Starbucks. A simple change can throw someone with dementia for a loop. Two weeks ago I arrived around 6am at Starbucks to find it redecorated. All the chairs and furniture were moved around to accommodate there Christmas sales of additional retail products. Spoke to the manager who assured me they will change it back after New Years. I've been struggling where to sit ever since. I feel like I'm playing musical chairs with a blindfold on. The music goes off and I can't see where the chairs are. So I sort of hang around aimlessly moving from one chair to another. Enough is enough. Have been uncomfortable and unproductive for weeks now. Routine needed to be changed and behavior modified. Normal logic dictates it's no big deal, just go somewhere else. For someone with dementia, anxiety creeps up with uncertainty. I'm now at a different location. May not seem like a big deal, but for someone trying to keep Humpty Dumpty together with elmer's glue, it is. Guess I'll see how it goes.

 “Vote for FTD/Dementia Support Blog in Healthline’s Best Blog Contest.  Find my blog on page 9 of the alphabetical list:

Contest (click) PAGE 9 - Please vote and help FTD Awareness!!!

You can vote Once a day. Please vote each time you visit this blog.

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. Got my kids tickets to visit me but could use some help so I can do things with them while there here. All help is deeply appreciated:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

FTD Demented Thanksgiving

 Mayo Clinic Black Friday special. 

Buy one PET Scan, get one Frontal Lobotomy Free

There's good luck and bad luck. I've no luck. Would you believe I don't qualify because I have FTD.  The nurse saw the huge disappointment on my face. I waited all night for this once a year "Black Friday" special. She told me I should be happy.  FTD is a free Frontal Lobotomy without Surgery. "FTD au natural" she beamed. I smiled back meekly. Yep, guess I'm just an unappreciative, self centered asshole. The nurse felt bad for me and offered me a free Lumbar Puncture if I'd have the PET scan done. What's a Lumbar Puncture I enquired? Sounds like fun. She explained it used to be called a Spinal Tap, but they changed the name so they could bump up the price. She proudly explained how the medical community followed the Starbucks concept. Starbucks changed the name of chocolate to mocha and doubled the price. Mayo did the same. Spinal Tap to Lumbar Puncture. The rest of the nation did the same. Mayo is a true leader in the medical community. 

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Thanksgiving Day. Knew I'd be alone and am absolutely exquisite with that. Of course I missed being with all my friends in NYC, but life is tradeoffs. I knew days like this were coming, but I also know they'll be over. Mindset baby. I will not get down or depressed. Just not going to happen. I'm living here in Arizona, riding my bike, driving my car and enjoying being out in the 73 degree sunny weather. Can also sort of afford to live here to. Can't do anything about  living in the land of the diminishing mind of FTD, but can keep my mindset positive and make sure every fucking day is good or great. I will not be fucking deterred on my mission of finding Happiness and Purpose in life. My FTD symptoms and issues I now blow off. Nothing is going to get to me. I'm living and loving life. 

Spent the morning with some Starbucks cronies. Everyone discussed there Tday plans. Yea, it sucked and I felt a void, but onward I roll. Also had trouble following cross conservations. FTD baby FTD. I live on planet earth and can't isolate. I'm much better with one on one, but can't give eviction notices to every one on the planet. Guess I need to deal with all you Normies :-) So I listen and try to keep up and absorb. Of course no realizes us FTD'ers are experts at making it seem like we're following. What am I going to interrupt every 2 minutes with, "Uh, excuse me but I'm not following because I'm losing my mind". Normal FTDness. Onward we forge. Let it all go and keep fucking going.

Met an absolutely remarkable woman. Have had light, intermittent contact through the world of FTD for close to a year. Now there's been first contact………………...

Decided to have a good bottle of wine with salad and Turkey or some sort of meat for my festivess Thanksgiving. Went to the wine store and took the recommended Cabernet. Next food. Started looking for restaurants and grocery stores. Wanted some real food for Thanksgiving.  In and out I went doing my indecision FTD wandering thing. Went on for over an hour. Finally gave up and went home. Salad and wine it was. 

Watched football and popped the wine cork and had my salad with wine about 4pm. Salad was from fairly old arugula and limp celery. Who cares, the wine was exceptional. Hey, no one out there can tell me I don't have my shit together and priorities in order. Wine first, food second. Enjoyed my Thanksgiving meal. Fell asleep whenever and woke about Midnight. I woke up ravished. Absolutely starving. All I had to eat all day was that leftover lifeless salad. Opened the refrigerator. Empty. I lie. There was cold water. My mouth was salivating, I was so hungry. I started laughing out loud and shaking my head at the absurdity of the situation. Here we are on Thanksgiving Day. Most people in the country are busting at the seams and wanting to vomit. There refrigerators are full to the brim with leftovers for the week. Here's Howard Glick FTD starving with absolutely nothing in the fridge. How am I to juxtapose such life contrast. With a good laugh. Big fucking deal. Couldn't even go back to sleep I was so hungry. Have been at Starbucks since about 5:30am. 

Still haven't eaten and I'm smiling. Couldn't give a shit. Being hungry doesn't bother me anymore. It's a definite Flufferfoot symptom. At least I'm still de-Walrus-ing. Left NYC 246 pounds, now 204 pounds.

Knew I was going to be alone and was okay with that. Moved here, changed my life, kids coming for Winter Break. That's life. Do the best we can and keep on trucking.

Life is what you make it. I've a wondrous life. No more mourning of the past or wants. There is today and tomorrow. Guess what? They'll both be good days. Just a bit of confusion over one issue. Should I go for the free Lumbar Puncture? :-)

Had many friends call and text all day and night. Was deeply appreciated. Meant a lot to me. Love you all.

Howard

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. Got my kids tickets to visit me but could use some help so I can do things with them while there here. All help is deeply appreciated:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

* 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. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard

FTD Holiday Survival Guide

* 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. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard

Walrus Alert - Left NYC weighing 246 pounds. Now at 206 pounds. When I left NYC I was busting out of my size 38 Levis, but refused to buy 40's. Would rather walk naked than buy 40's. Now I just bought 34's at Costco. Am now on the last hole on my belt. Hey, good news is when I die they won't have to slice my death suit open in the back for me to fit into it. Should fit just fine. Whew, at least won't have to die uneasy.
                           
Another holiday season is rolling around and I'm so thankful to be here on planet earth. The minutia in my life, I left back in New York City. I'm very sick, but I don't care. I'm living life and doing great. I'm happy about what I have in life right now, no longer mourning what I lost. Life flows and you can be a moving river or a stagnant algae filled pond, where life and air is sucked out and your choked to death. 7 days a week starts out with a chuckle, as I can never organize getting out the door smoothly. Sometimes I have to turn around 3 times to get my Alice bag. My good friend Alice in NYC taught me to carry a small bag of veggies to Sbux every day. This Alice bag is partially diluted, but it usually has carrots, pea pods, broccoli and string beans.

Every morning I have to find my backpack from the day before. Then it's like heaven. My 5 minute bike ride to Starbucks where I have my stump of the day. My Sbux buddy stumps me every day. Hard to tell if he's purposely fucking with me or happenstance. A bit of both. I'm thankful he keeps me on my toes. He asked me yesterday if the NY Jets won the day before. No, they got killed. Who did they play? Don't remember, have no idea. I laughed. Welcome to Howard's world. My buddy gets me every day. 

Probably the thing I miss about NYC is the relationships I had with people. Challenging each other intellectually. FTD was just a weakness to exploit and rip me a new asshole. Try to get anything past Alice or Stephen Athineous. You'll get your head handed to you. Had to be on your toes 24 hours a day. These were also exceptional people who with there actions and the way they lived there life did nothing but make  this planet a better place to live in.

Lately I've been off a bit because Starbucks has gone into Christmas mode. What that  means is they changed all the seating around to accommodate there retail sales. Each morning I walk in not sure where to sit. Sort of like playing musical chairs with a blind person. Right now I'm in my FTD power chair. Uncomfortable, take no shit and just get your fucking work done chair.

Funny, to me FTD is all about luck, routine and adapting to change. A sense of humor helps.

Luck in where and how fast the FTD progression is. My heart goes out to patient and caregiver alike where of all progressions. No one has a moratorium on pain in FTD world. Doesn't matter how much time I have left. What matters is the quality of life. Howard's world consists of making a better quality of life for me and those in my world. My antidepressant is fighting FTD symptoms which is no longer a battle, but just a part of me. Was on the phone with an FTD'er at 6am this morning and told the person I had to hang up and get out the door or I may never leave the apartment. There was immediate recognition and I was out the door. 

I live in the land of the diminishing mind. I'm rewired and dealing with it. It does get rough and confusing when my mind get muddled and the wires cross. I say and do things that come from a person with a sick mind. Instead of faltering, I stick to my routine and don't deviate. Won't get stuck in the quicksand of my brain and dragged away by FTD's number one enemy. That pesky parasite we call depression is out there, but I'm not buying into it. I'm not fragile and will not falter. 

Getting set in a routine is extremely difficult, but what happens when that routine needs to change. Have been struggling to get my book going. Just can't seem to get it fit in. Tried to slam book writing into my routine, but that hasn't worked. Routine change has to be consistent and gradual. My morning is Starbucks, but I'm gradually shifting the rest of the day and afternoon. It is working. Fooled myself into thinking I would have more afternoon energy since I've lost 40 pounds, but that's a fools dream. I have FTD and need to rest a bit around noon. I'm now writing more and more for my book. Have eased off the pressure on myself and it's starting to flow. 

There's yin and yang with FTD.
The Yin - Sat next to an 89 yr. old WWII vet. He served in San Francisco protecting the Bay area from Japanese invasion. I was a veteran of the Israeli army and there's usually a camaraderie amongst vets. He ordered food to go and we chatted. Richard outlived his wife and kids. It was sad, but he kept pushing at living life leaving his Assisted Living, driving and going to restaurants. When his togo food came I grabbed the bag and walked him out to his car with it. We talked at his car and he mentioned he might not remember me next time we meet, so I should forgive him. He didn't realize we were on the same team of diminishing brain cells. When I went back in to "Uncle Sals" I received accolades from many at the bar for helping him. Was sort of shocked, thanked them but said it doesn't bare well for our society that we're so devoid of manners. We should naturally be helping our elders and be criticizing those who aren't getting off there lazy asses with the little effort it takes. Took me about 20 seconds to go from hero to asshole. Ask me if I give a shit?

The Yang - Was at Costco and was loading my car with my few items and saying goodbye to a senior citizen woman who I befriended in the store and happened to be in the car next to me. Next thing a nasty, vile elderly lady in her mid-eighties told me to move my car with the nastiest tone. I don't even remember returning my FTD gesture to her with equal passion. As I opened the car door I turned to face an extremely hostile, 6'2"+ twenty something year old. Of course it escalated….. The chapter is called Vile Lady in my book. I was conflicted to post the Vile Lady incident here on my blog. Of course it ended like all my FTD altercations with end being no one hurt, but a better insight of FTD revealed. This really showed me how apathy has entered my life. There are so many wonderful and horrible pieces to my FTD puzzle. Hopefully my book will give a better understanding of FTD and help those with any type of dementia, live a better quality life.

Actually pretty excited about my book which is cruising along. I've never taken a righting course, so hopefully I'm heading in the write direction. In "I'm Aware That I'm Not Aware" you will meet some of the best people humanity has to offer, as well as the lowest scum on the planet earth.

I've no publisher, nor editor. Laughing here. A good friend in NYC might be able to help. Any ideas or help from out there would be welcome. howardjglick@gmail.com 
This just like when I first started my blog. Me and the keyboard, love it. Grassroots baby. When I finish it, it will be published. I'll do it if need be. Have decided to buy a copy myself so I know at least one will be sold. This will not be a tragic or depressing book. This book will be about how to live life with dementia. Everyone deserves a happy, purposeful in there life for whatever time we have left. 

One of my main motivations is to make money so I can see my kids more often. I will see my kids for winter break in December. That's twice in 2 years. I really would like to see them more than once a year. Instead of complaining I'm doing what I can to try and make that happen. 

***** Need help*****AFTD was kind enough to send me 1,000's of my emails to them in the last couple of years on a flash drive. This is my daily and nightly records of life with FTD. Problem is I can't figure out how to open a new Outlook account to access them. I've a Mac and there in Microsoft language. If anyone has Microsoft Outlook experience and can help me install and open the emails, it would be deeply appreciated. I've spent hours and hours unsuccessfully trying to accomplish this. It's probably as easy as me missing to check off one box. howardjglick@gmail.com

It's taken me many years to learn how to handle holiday situations and I've certain strategies which now work. 


Whenever I go somewhere I need a "quiet escape room". Before you leave for your holiday trip, arrange a room for you or your loved one can go to, to take a break. Better than leaving in the middle of Turkey dinner. Usually an hour or two is all I can take of all the noise, smiles, overstimulation and holiday cheer before I start unraveling. I start heading towards a negative place with inappropriate remarks and behaviors that I'm unaware of coming out. Rather than force whoever I went with to leave and be a total party pooper, I always make sure there's a quiet room I can escape to and lay down for however long it takes. I used to meditate, but that stopped some time ago.  People know I have FTD and it's never a problem finding a safe room. I'm happy to be around friends and it doesn't matter if I miss the meal, event or whatever. I might fall asleep or just lay there quietly.

I used to just run off if possible or make make some peoples lives miserable. No more, now I head to the quiet escape room and maybe I have some time left to hang out and really enjoy myself. No matter where I go now, there's always an escape plan. I do much better at planned events. 

As far as helping cooking and preparing. If I know in advance, I can work on preparing something, but even that has it's challenges. At Thanksgiving I was asked to bring ice and dinner rolls. Instead I offered to make salad. I was told to make salad for just 8-10 people. I made it for at least 30+. It blew my budget and I wound up giving much of it away. Next year I'll bring the ice. I just have to give up things I used to do and change my way of life to coexist both with FTD and the world around me. 

If you have FTD and can no longer cook or do everything you used to do it's okay. Do not beat yourself up or try desperately to do something you can't successfully do. Accept you can't do what you used to do and find something else to do. We all want to feel useful and a part of something. Whether it's walking the dog or taking the dishes off the table, there will be a way to contribute. We have a tendency to beat ourselves up. It's the disease, not us. Be useful and don't mourn about what you can't do, find something you can do.

When you have a progressive disease like  FTD, things are going to keep changing. Expect the unexpected from yourself. I am lowering the expectations of myself and letting people know to expect less of me. That's extremely difficult  constantly giving up cooking, driving, helping with kids etc. for those of us aware with FTD. If we don't give in and screw up, we usually don't care and that frustrates and makes angry the people around us. If your a caregiver, you need to realize if you get one good hour at a holiday situation, that's a good thing. Take and appreciate that. Don't dwell over years past. Enjoy the moment and wreck your normal brain over what no one can control.

Traveling with FTD for me is easy now. My Mantra NAFW - Not a Fucking Word has saved me many a time. I no longer say a word at airport security, hotels etc. After 120 flights a year and over a million miles, I'm on cruise control when I travel. It's extremely easy to get out of control with FTD. One wrong question and we're in someones face. Airports and hotels are perfect places for nonsensical questions that get a normal person crazy, never mind an FTD'er. My advice to caregivers. Drill NAFW into your loved ones head long before they travel. NAFW means ignore everything and just comply, now matter how stupid the person is in front of you.

Carry FTD Awareness cards which you can print off the AFTD website for free.

Just try and enjoy the holidays for what they are now and don't push yourself, caregiver or patient to make it like past years. A couple of great hours is better than despair. Make the best of every moment.

Have a wonderful Thanksgiving everyone.

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, cash. Got my kids tickets to visit me but could use some help so I can do things with them while there here:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

Howard

FTD Awareness, Apathy and Impulsiveness

It's hard functioning knowing your reasoning, judgement and filter are off. "I'm aware that I'm not aware" of what's happening real time. Real time is not a reality in my FTD world. Being embarrassed, frustrated and totally disappointed with myself is now a commonplace occurrence  Also is forgiving myself because I know it's the disease, not me. Just sitting here I'm thinking how at a new bar/restaurant Friday night I told the bartender who was wearing shorts what great legs she had. Not just a comment, but went into detail describing the curves of her calfs etc. (pic below is my realtime grimace as I type)

My realtime grimace

FTD sucks. For some reason when I do these things they have such an air of honesty that I never have had pushback. I'm also not making an advance towards woman when I do this and that comes across. Just showing an honest appreciation for there beauty or how well they take care of themselves. Never been yelled at, slapped or punched. There really just compliments gone awry. Never have had to hand out an FTD awareness card. The Leggs bartender, took it as a compliment and told me she was a former collegiate soccer player. Now she bar tends, as well as is building a finance career. 

Well, just told the Starbucks girl how pretty she is with just the little bit of rouge she put on. Young and beautiful. Just a wee bit of makeup highlights her features. She's very pretty. I've told her this before along with her cute Mr. Magoo-chick glasses she wears. She smiled having no idea who Mr. Magoo was. Whether I was appropriate or not, I've no idea. I know I go into details of what and why I like or don't like something. Whether it's appropriate behavior. I don't know, nor care at the time. For you that don't know the cartoon character, you should Google: Mr. Magoo

Funny thing about awareness. You have to fight for it. I did have a "first" date a few weeks ago. Of course the beginning of dinner started me off talking about me, myself and I. Mid dinner my awareness alarm went off and at the next conceivable break in conversation I asked her to tell me about herself, family favorite area of vacation and life. She was a bit shocked and said she read people with FTD were apathetic and self absorbed. Yep, that's what the docs generally agree on and feed it like a poison to FTD'ers and caregivers. Yes, each person is on there own FTD journey, but I've seen enough FTD'ers light up and fight back for as long they can for awareness. It's simple, we're in a war against dying brain cells. How the rest of the brain rewires to compensate, well that's a theory game. In all fairness my girlfriend in NYC helped train me with awareness. When totally self absorbed and not even asking her any question about her, she'd get up and leave. This happened frequently in the beginning, but like Pavlovs dog I learned. I've also learned you have to fight every moment with FTD and more importantly, let things go and forgive yourself for what you can't control. You just can't keep fighting and questioning yourself. 

Weight gain and awareness:
Okay, so I've turned fanatical. I weigh myself each morning with the scale being on my kitchen floor. Went from 246 pounds in NY to 209 pounds this morning. Funny, how docs keep telling you, "Yep, weight gain from carbs and sweets is an FTD symptom". Yo docs, how about suggestions on how to focus FTD behavior on methods of losing weight and taking care of yourself with FTD. Never here that from docs. We've been written off by ignorance. Each person has there own progression path and rate of decline, but there's no question you go further by using your mind, exercising and keeping your body in order. We've got a lot of fight that can be focused. Part of my morning routine is turning on the water for the shower, then heading to scale in the kitchen. Weighing myself each morning works for me. I'm committed to getting to 190 pounds. 

Mint Chocolate Frappuccino Samples
Fuck that!

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A week ago was sitting with my Starbucks cronies and a senior woman with a wondrous smile and bike helmet in hand entered. She just rode 10+ miles on the bike path Greenbelt and was so excited. Bike Lady's youthful exuberance at 61 was contagious. Hold it, I live on the Greenbelt. What bike path. Have been here about 2 months and now I learn I live on a famous bike path. Thought it was just a Golf course. I decided when I hit 210lbs I was going to start working out. A couple of problems with that occurred. My hand problems and severe arthritis which even typing now is painful, plus the cost of a gym membership.

Bike Lady inspired me. As I said earlier, I try not to be impulsive in buying. I check my bank account about 10-20 times daily minimum. Haven't a clue to my finances, am bleeding, but okay for now. A bike would mean exercise and biking to Starbucks daily, as well as another activity in my routine. A few miles on the Greenbelt daily would help. Spent the 2 days after my bike lady inspiration running from one bike shop to another. Found a great bike at Landis Bikes, but the sales boy was an arrogant little shit. Wouldn't buy from that asshole or his shop. Did request and receive a nice solid business card which I used to remove bird poop from my car.  Finally one shop with 1K+ dollar bikes sent me to a shop they thought would fill my needs, Bike Emporium. 

The owner of Bike Emporium was full of  positive frenetic energy. You could tell she drove everyone around her nuts and all that entered her world absolutely loved her.   This 30 yr. old,  tiny 90lb., sassy, spunky chick was going a mile minute and loved what she was doing with her life. This was the 3rd Crystal I've met in my life and each was remarkable in there own way. Crystal took absolutely no shit and totally abused me. Of course I loved it, plus she had the coolest Canadian accent. Decided I was buying my bike from Bike Emporium. Settled. Explained to her my FTD and other deficiencies and she put together the perfect bike for me. I asked Crystal about a bell or horn and she pointed me to a large case filled with them. I picked one out and of course she told me how ugly it was and picked a really cool bell. She picked out a certain handgrip to help with my arthritis etc. 

All in all, she gave me a discount but I paid double of what I was thinking of spending on my bike. 

`

Crystal at Bike Emporium in Scottsdale

Went from the bike shop to the supermarket and who do I run into at the door, Bike Lady from Starbucks. Told Bike Lady excitedly that I just came from buying a bicycle. Thanked her profusely for the inspiration she'd given me at Starbucks. She was excited for me. We small talked and parted ways.

Crystal delivered the bike the next day and showed me how it functions. My last bike was when I was 14 years old. Had it for a few days. My last memory was standing helplessly on a NYC street as a thief rode away on my bike.

Well, back to the bar with Leggs the bartender Friday night. There were a few people in the bar when an old crusty geezer entered. We looked at each other and there was an immediate connection. Love at first site. He said to me, "Do we know each other?' Terry and I laughed and the next half hour we we're hooting and laughing. Both of us kept commenting how familiar we were to each other. I thought maybe he has dementia as well, who knows or cares. We were having a great time and Leggs even served me a glass of wine. His kids came in and then his wife walked in. Terry went to introduce me to his wife. I sat there with my mouth wide open. It was Bike Lady. We hugged, talked laughed and told Terry how we knew each other. I then took Bike Lady and her brilliant smile out to see my bike. They parted and all were excited at what we had experienced. Terry and I were talking how we were looking forward to getting together again. Guess he frequents Leggs bar/restaurant. What an amazing world we live in…….

Have been biking every day. Did fall twice so far. Couple of scrapes. No helmet and love the wind in my hair. Hey, not much brain left to damage there anyway. Biggest problem so far is how to lock the bike. Stood there for over an hour trying to figure if they could steal the tire or bike and how to put it on. No success. FTD sucks. A Starbucks buddy and salt of the earth political savvy Scottsdalian, Jeffrey saw my difficulty and came to the rescue. He knows I've FTD and showed my how to properly lock the bike. He reinforced it in me a few times after. Just wasn't sure…….. Maybe it was PTSD from that bike thief riding off on my bike when I was 14. 

Is it on right?

Do I have to name them?

The Greenbelt

Howard Glick  

Living Life. One FTD day at a time

New Diagnosis

Ever feel like the universe is just fucking with you.

Ten years ago I got sick and my whole world went upside down. Never knew what hit me. Lost my successful longterm career, family, money, soulmate, friends and health to FTD. Lost everything a person could lose. There is no recovery from FTD. There are no medications or therapies to slow, stop or reverse it's progression. You will continue to lose your mind till your mind till your dead. 

What I did learn is not lay down and die, not be depressed, not mope, not feel sorry for myself and never ever give up. Whatever obstacle gets in my way, I will figure out a way to overcome. If I can't overcome it, I let it go. I forgive myself quickly for the actions I can no longer control. I believe everyone has a right to happiness and purpose. Both happiness and purpose don't just show up at your doorstep, but you need to fight for both every moment of every day. I do everything I can to help others with FTD as well as other walks of life get on the same path I'm on.

I also have learned that I've a sense of urgency that drives people crazy. I'm on the clock. That clock is FTD and it's ticking down.  I've no time or patience for bullshit or lackluster efforts. 

I created a new life and started over making this blog my core and expanding out from here. I've risen to become a successful writer/filmmaker amongst other things. I type and film on a daily basis. On moving day from NYC I was filming while walking up stairs and fell. Both camera and I got broke. Joe Becker, the filmmaker got me a new camera in 2 days. Wish the same could be said for my body.

It's been about 3 months since I fell and injured my right hand. The pain and swelling have gone up and down. I've tried to ignore it but it's reached the point that even shaking ones hand has brought me to the edge of tears. I figured it had to be a broken bone or ligaments. My left hand was a wreck with 6 of 8 bones being broken or dislocated. Have been on and off painkillers for years. Since damaging my right hand, I've been forced to use my left and now it's 24 hrs. of chronic pain.

I know there's a huge stigma about the dreaded painkillers, but they are relief now. I could write an intellectual article on how Vicoden is working pain relief for me with FTD, but no time now. Found a doc and he sent me to an orthopedic surgeon. Dr. Thull was voted one of the "Top Docs" in Phoenix for at least 3 years straight. I already had the mindset that I had a ligament or bone damage and needed surgery. At one point I found myself sometimes not being able to wipe myself with either hand. Chop the fuckers off and give new me hands. I think you get the point.

Dr. Thull had the X-rays and examined both hands. Left hand beyond repair. The right hand with the extreme pain came a shocking diagnosis. Severe Arthritis and a good chance nothing will help. I was in shock. The fall with the camera brought about a condition that was there. Surgery would not help. He told me to try Aleve for 2 weeks and if that didn't work, cortisone shots, but didn't know if that would be successful.

I left in a state of shock and filmed my thoughts and reaction for  "Howard's Brain" at a bar with a Diet Coke. I've busted my ass beyond belief to recreate my life and exist with FTD for as long as I can. My life consists of typing and holding the camera. My new career is now over. Now it is painful to type and I can't hold a glass of water in my right hand, never mind the camera. I'm totally devastated. The Universe hates me. Some people that have heard have wrote to me about use Dragon speech to text software. I love typing my expression and emotion. Love the sound and feel of pounding away on my keyboard. Now what the fuck am I going to do? Start a new career in crosswords and puzzles. Maybe I can become a clown.

Tell you what I'm going to do. I'm going to keep on keeping on. I'm not going to increase my painkillers, in fact I'm going to decrease them to there previous level that's helpful but not interfering with my life. I am going to keep blogging but will be cutting back. 

My new main focus will be my book, "I'm aware that I'm not aware" each morning 7 days a week. My book I believe will not only help with FTD awareness, but help anyone dealing with a chronic disease. My main focus will be my book, then my support group which helps many including me and the long term project: "Howard's Brain". Am also going to be working on booking speaking engagements. I've applications out now to various groups and Universities. Will soon have a highlight disk to send out. Don't think there's any disease that can ever shut me up.

I might be crippled by pain and movement but I'll find a way to type. I'm in pain right now. I don't give a shit. I'm sorry Mr. Universe. You better come at me with more than FTD, Cancer, Heart Disease and now Arthritis. Anything short of Leprosy with body parts falling off and I'll keep going. In fact, I'm more determined than ever. 

Now I'm going to pull an FTD reversal and say thank you God and the Universe for the tools and help you've given me. In the last 2 years I've accomplished more to make a difference in others lives than I could've ever dreamed of. 

I was walking in pain for 3 weeks from buying sneakers 2 sizes to small. Thank you for putting that sales guy in front of me who told me I was in pain because my feet were busting out and he replaced them. 

Thank you for having Kevin Smiley inspire me by losing 25 pounds with FTD. Up to then it's just docs saying, Yes, those with FTD gain weight from sweets and carbs. I've now gone from 246 pounds in NYC to 211 pounds this morning. Can't figure out how many pounds that is right now, but it's a lot and I'll keep going. 

Thank you for giving me a firm diagnosis with my hands. I know what I'm facing and I will not stop any of my work on projects. Might have to shift a bit, but I'll keep going. There's always a way to get things done and I'll find it. I'll walk into that Valley, facing the pain and keep going. Why? Because I am the baddest mother fucker in the Valley.

Howard

* 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. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard

I could use help. Am on Social Security Disability with no other help. Gift cards, etc. They are deeply appreciated. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, cash. Letters with FTD questions are fine:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

Fighting the judgment battles

Was out on a date last night, a first date. Thank God for first dates, since I rarely make it to a second. Might as well be a Vampire. I'm funny, charasmtic and intelligent like a Vampire. But, do you really want to be part of my world? I've now lost 33 pounds since leaving NYC, so I might be even considered decent looking. I've had some remarkable accomplishments and really am a good guy. But, do you really want to be a part of my world. Dating me is an adventure. I've never read the FTD dating protocol book. Don't think it exists. It will have to be a chapter in my upcoming book. Probably under the heading of my new dating service D-Date or Dementia Date.

How people  handle disease is how they handle life. Life is the ultimate curveball and FTD is the pitch. I like how the previous line sounds even if I haven't a clue if it makes sense.

Last week I wrote about the sneaker incident. I bought sneakers 2 sizes to small. Didn't pay attention nor care at the time of purchase. Just wanted to get back to my writing at Starbucks. Wore them for three weeks in extreme pain. Spent a ridiculous amount of hours buying bandaids and scheduling when to put them on, adjusting the laces and even figuring how best to walk so they didn't hurt me. My reasoning and judgement are off. Didn't think at all that there was a size or fit problem.

I tried on the sneakers and took a couple of steps, paid and left. It wasn't impulsiveness as much as bad judgement. Should've walked a bit, checked the toes etc. When I returned them I was shocked when the sales guy pointed out my feet were busting out of them. The cost was $50. I've had the new ones on for days now and it's so nice not to be in pain. I would've limped around in those shoes till they were worn out I was bed bound. I'm not looking after myself the way I should. Right now my feet are perfectly fine, but typing has me in pain that would cause any normal person to stop immediately. I have slowed down with my blogs, posts and responses. My new doc had both hands and wrists X-rays. One shows severe damage and arthritis. 6 out of 8 bones have been broken or dislocated. Multiple surgeries and very limited movement now. Yes, constant pain which is worse now because of extreme pain in the other hand. So now I'm using my severely damaged hand because I can't use the other and now that both are killing me. Guess I shouldn't complain. It could be worse. I could be suffering from FTD, cancer, heart disease or flufferfoot. All diseases whose asses I've kicked in the last couple of years. Guess this is the part where I should be throwing a pity party. Tough times, eh. Two years ago I was out of the hospital after my cancer operation, alone like now and doing the wash in the basement of my NYC apartment building. My catheter was ripping my penile skin and it was bleeding. I'll take the hand pain.  Hey, I'm patient, caregiver to myself and tireless awareness advocate asshole. So do I deserve a party or some common sense? I'll take the common sense. Have an appointment with an orthopedic doc this afternoon to figure out what to do. In the meantime painkillers are giving me some relief. 

The whole sneaker incident bothers me. Shows me I'm off kilter. I know it, but who likes to face it. How many sneaker incidents are there? I've no idea. Comes with the territory of having a disease that effects your judgment. I know my judgement is off, but I'm doing the best I can and will continue to do so. My main motivation behind going to docs is because I'm in so much pain typing. Typing is my life and I've a book to complete and a movie to make. BTW - Just filled up another memory card for the FTD documentary, "Howard's Brain". Can't hold the camera because of my hands, but have been using a tripod.

* 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. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard

I could use help. Am on Social Security Disability with no other help. Gift cards, etc. They are deeply appreciated. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, cash. Letters with FTD questions are fine:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

Living med free with FTD in Arizona

Howard

Pain

Bought a pair of sneakers a few weeks ago. I usually act pretty fast when people make comments. Someone sort of hinted by telling me I could put my sneakers in a bucket with bleach to refresh them. Bottoms were worn. They sort of ran away on there own long ago, so I took the 50 yard trek from Starbucks to Big 5. Big 5 is  the "Staples" of sporting goods. The 10 year old customer service rep helped me. Bada Bing, Fifteen minutes later was back typing at the Starbucks table my butt is now acquiring.

A couple of days later they really started hurting. I'm no hero, but seems my body has been crackling from pain for a while now. It's not just the pain. With FTD your ruminate on the pain, which makes it worse. I ignored it hoping the sneakers would break in. Instead my feet were getting broken in. I started putting on bandaids when my socks were getting stained with blood. Of course the story within the story was buying a box of bandaids. This included trips to "Fry's", "Walgreens" and "Walmart". What type, size, cost etc. Nothing is simple in FTD world. My morning routine now changed to include band aiding each morning. Of course it's a domino effect was now I didn't have anyplace to throw the bandaid wrapping, ends or used band aid. I've bought minimum 4 garbage cans and returned them all since moving. To tall, to small, color etc. Now I've these annoying little pieces from bandaids. Found an empty plastic bag to throw them out it. Days later I discovered my unopened meds were in that plastic bag with bandaid pieces. Hey, everyone hates those little pieces that fall on the floor etc. Can't they invent edible wrappers. The bandaids helped, but my feet still hurt and I needed to adjust how I was walking. 

Now it's three weeks or so later and I'm back in Big 5. Not because of the sneakers, but need to refresh another of life's items that wear out. I'll spare you.

While looking a salesman asked if he could be of assistance. Since my feet were hurting I went right into how I purchased the sneakers 3 weeks ago and they hurt and are cutting into my foot. Could anything be done? Chris told me he could see by looking at them that they were way to small and stated I should've had him help me. Ridiculous. I told him someone else helped me and I came to Big 5 and paid more for sneakers not expecting experts, but a bit of help. Hey, I expect to pay a bit more, but get product that works. Otherwise, instead of dealing with brainless twits, I might as well save money and order from Amazon or Zappos. He asked if I had the receipt. No, and I told him I had dementia. I don't know if Chris realized it, but we were heading into an FTD realm of no return. This was about to get out of control and I really didn't give a shit. We went from bad sneakers to me spending $50 and getting ripped off from incompetence. Unacceptable. 

Chris was a good manager/guy. He had me sit down. Brought out the same sneakers except 2 sizes larger. Took me to the register and made an exchange. Wearing them now. It's so nice not to be in pain. Big 5 has now earned a loyal customer instead of the worst enemy in the world. An FTD'er.

I'm aware that I'm not aware.

*Just wanted to say I do take total responsibility for this whole thing. If I wasn't sick, I'd have realized when I initially tried them on that they didn't fit. I wouldn't have worn them for weeks in pain. They were ridiculously tight. In fact, they were crazy tight. What can I say it's the disease, FTD. FTD causes your judgement to be totally off. *Added on after article was written.

Have been is a tremendous amount of pain lately. Both hands. wrists killing me. X-rays show extreme damage to one wrist. Had 6 of 8 bones broken/dislocated. Multiple incidents and surgeries with severe arthritis now. The other I can't hold a glass of water and it hurts to type. Have an appt. with a specialist on Monday. Have to actually use my other hand to release the emergency break. Shifting hurts like hell.
Used to take painkillers, but stopped. All the public stigmas and my girlfriend used to drive me crazy. Back on them now and I have relief. I can't tell you how nice it is to have relief from chronic pain. I've a new doctor now, Dr. O'Leary is a good guy. Was interested in FTD and me. Glad I didn't have to fire another one.

Onward we forge with new possibilities opening before my eyes. Will make this blog short. Yes, I'm in pain.

Howard

Alzheimer's Foundation article on FTD

FRONTOTEMPORAL DEMENTIA:
A DISEASE STILL CLOUDED IN MYSTERY
The Alzheimer's Foundation of America

PLEASE ENJOY THIS ARTICLE ON FTD FROM THE 

ALZHEIMERS FOUNDATION of AMERICA 

I ADDED AN ARTICLE FROM AFTD AND 2 FROM FORBES. THE PURPOSE IS TO SHOW HOW PEOPLE CAN ADJUST TO LIVE WITH FTD.

THANK YOU

Please scroll down for full size article

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

FORBES ARTICLES

    Alice G. Walton, Contributor

    I cover health, medicine, psychology and neuroscience.

Brain Ventures: A Businessman's Battle With A Rare Neurological Disorder

If you start chatting with him at the localStarbucks where he hangs out six days a week, you might not realize much was wrong with Howard Glick. Intense periods of working on his laptop punctuated by animated banter with the other coffee shop regulars make the 53-year-old native New Yorker seem like a regular Joe.

Howard tells people that he is a retired businessman who now devotes his time to a medical blog, which is mostly true. He is a former regional director of sales for a successful tech company. And he does have a blog that educates people about a medical condition.

But there’s a lot more to the story, 

Click for full Forbes article 11/2011

Inside The Mind Of Frontotemporal Degeneration: A Patient's Story

The first of the FTD patients talks about what it’s like to “live a life that’s slowly slipping away.” More patients will share their stories in the coming weeks.

 

A self-professed pain in the butt, Howard Glick, 54, has shaken up the FTD community, mainly for the purposes of bringing patients together and bringing attention to this little known brain disease. Last year, he launched a blog to chronicle his own road with FTD, and he is now, in concert with the Association for Frontotemporal Degeneration (AFTD) and producer Joe Becker, making of a documentary titled, appropriately, “Howard’s Brain.” He also heads an online patient support group for “FTD’ers,” the first of its kind. Caregivers are not allowed to join.

When asked to describe what it’s like to be “inside” a brain with FTD, Howard speaks candidly. “I 

Click for full Forbes article 5/2012

I live alone and could use help. Am on Social Security Disability with no other help. Things are real tight. Gift cards, Starbucks, Costco, Trader Joe's, Outback, cash are deeply appreciated. For those that want to help there is a yellow donation button on top of the page. 

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

howardjglick@gmail.com

* 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. There are 80+ members from 10+ countries. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard