Friday, November 29, 2013

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

Tuesday, November 19, 2013

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



Monday, November 11, 2013

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