Giving up Driving

Woke up last night choking. Choking on my own phlegm. Starting to seriously think about dying with dignity.

Contacted my daughter Chelsea a few days ago. She's a sophomore at Washington State University. A straight "A" student. Doesn't drink or party. Both my kids are doing amazingly well and I'm so proud of them, considering growing up with FTD dad. Told Chelsea I need to give up driving and will giving her my car at the end of the Arizona summer. I'd give up driving now, but we're facing the Arizona summer with temperatures routinely over 110 degrees.

I've had people drive with me recently and everyone agrees I'm an excellent driver. To the naked eye I drive fine. People also say they can't tell I'm sick, that I look and act fine. All FTD'ers are familiar with people questioning whether we are sick or not. We are driven crazy that we are so sick, dying of a progressive terminal brain disease and people question or make light of it. Yet, when it comes to driving the same logic doesn't apply. Many FTD'ers have no awareness or insight that there sick and have to have there license pulled. Some states revoke your license immediately upon FTD diagnosis. Many have some awareness won't give up there license do to independence, logistical needs, work, survival or simple human nature. I refuse to be judge or jury on anyone and there decision. I do know what FTD'ers are going through. I've had FTD for 10 years and have been driving. I know it's the right and responsible decision for me no matter how drastic or inconvenient it will be to my life. 

(Thinking about a moped or motorcycle?)

I play the same mind fucking games all of FTD'ers do. Avoid the highway. No long trips. Cut back my driving. Drive  only where I'm familiar with. Drive only a few miles a day and just to the store or restaurant. The illusion of safety and doing the right thing. Then there's reality. I've FTD, it's getting worse and I'm going to need to stop driving. I follow traffic laws like any other citizen. Have my Mini Cooper and have never been cited or pulled over. No fender benders. Have killed numerous insects, though this can never be proven do to window washer efficiency. 

Six months ago I moved deciding I had to leave NYC. Had to move from friends and support systems. Was told I wasn't allowed to move nor drive. I refuse to live my life in fear. Fired my Power of Attorney, moved, upon landing in Arizona went directly from the airport to the car dealership. There is no perfect place to live life with FTD. In fact life sucks with FTD everywhere, but as far as I'm concerned it's a good "sucks" here and I'll make it a good sucks anywhere. NYC is not a place one should live with FTD. Another topic for another time. What I can say is I've absolutely loved my 6 months of Mini Cooper driving. I love sitting on my balcony enjoying the 70 -80 degree weather.

What is life without a car for Howard FTD. Closest grocery store is over a mile away. No family, no friends, no one with a car. Remember I'm the neighborhood nut. So how do I get to docs etc? Public transportation is very limited here, but I'll do what I can and bike it. I don't keep food at home and can't decide what to eat when I'm out. I now regularly choke on liquids on phlegm and liquids. Besides morning in Starbucks I avoid people because of my behavior. Assisted Living? No way. I'm not the Assisted Living type. I'm extremely well educated on AL, have visited many and have many FTD friends there. Not for me. I'm not prepared to rot away. Dying from FTD is horrific. If you don't think I'm not looking at dying with dignity, your out of your fucking mind.

Flying to NYC next week for the AFTD Conference. Will be hosting a breakout session with 23 FTD'ers on "How to make a better life after diagnosed" and addressing the General Assembly with question/answers. Am so excited. There will also be some of the top FTD specializing neurologists and medical personal in the country there. Many of my FTD compatriots from my support group, caregivers I know. Close to 300 people attending.

Will be happy to see Dr. Ted Huey from Columbia presenting. He is one of the top FTD specializing neurologists/neuropsychiatrists in the world. I met Dr. Ted Huey when first diagnosed and he got me off Aricept, which had horrible aggressive side effects. Don't know if he'll remember me, but I'm forever grateful.

* I run a private FTD Patient Support Group on Facebook.  The groups for FTD Patients Only and 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

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. 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. All help is deeply appreciated:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

FTD Aggressiveness and Love

Remember when you were a kid and there was always the neighborhood crazy person. The one you as a child avoided and made fun of. The person parents held there children closer when around and who people gossiped about. You'd pass that person and smile slightly to be polite while cringing. Possibly talk for a few seconds being mannerly and feeling sorry for them. Every neighborhood has one. We all know him, it's that guy. I'm that guy now. The neighborhood nut. Awareness cards, explanations, brain disease, big fucking deal. Here I'm alone and alone is alone. Back in NY, I had friends who would sometimes explain behind the scenes my FTD'er behavior. Even then many of my friends would no longer socialize with me in public. Here, as with everywhere you try to explain FTD. Some get it, some are scared and others say "you don't look or sound like anythings wrong with you." That's the FTD curse. If they "get me" fine. If not, fuck em, next. Maybe I should join the traveling circus. under the guise of "FTD man", the man with the diminishing mind and unfiltered mouth.

The the last few months have seen multiple complaints about me in the apartment community including almost a fistfight with a neighbor who followed me up the stairs to his apartment. All I know is I went to him and his wife's apartment to apologize for a behavioral issue. Next thing I know we're almost at blow's. It's beside the point him and his wife are a couple of assholes. This is the third time in 6 months I was teetering on the edge of a slugfest. Once after cursing out an 85+ year old woman at Costco. Wasn't even aware I did something wrong, till there was some big 30 year old in my face about it.

Do I have a history of violence? Last time I got into a physical altercation I was 13 years old. Gave David a black eye and we're still friends now 43 years later. Never been arrested, though have killed my fair share of NYC cockroaches. My behavior has gone downhill. Why? I have bvFTD (behavioral) you assholes. I now have a flash/anger problem. I could be fine and within a flash of the wrong statement, I'm in anger mode. It's always verbal and anytime it's gone towards the physical, it's been at the behest of the other person. I would say the chances of me starting a physical altercation are still about as much as me winning an Olympic medal for woman's ice skating. 

Many FTD'ers are similar to me with flash/anger viper tongues. FTD - Incurable, untreatable and unstoppable. The best I can do is drink a bottle of $2.99 Trader Joe's wine at night to relieve myself of the living hell known of what happens in my life with FTD. Some FTD'ers are on antipsychotics like Seroquil or other meds to help combat FTD symptoms or make them easier to live with. We all have our choices and do as we must. No right or wrong in this. I like my head clear and am on no meds for FTD. Spent 6 years in a medically induced fog while misdiagnosed as bipolar. I'm losing my mind and am going out aware of it.

Will my aggressive behavior continue to get worse? I've absolutely no idea and as with any of the smorgasbord of FTD symptoms, they come and go with no rhyme or reason. I'm sure frustration and difficulties of living with a degenerative brain disease contribute. No question progression has speeded up. Have been having issues choking on water and liquids. Used to have that rarely, now more frequently. Friends have written me suggestions which I keep forgetting. Head up, head down, breathe, don't breathe. Not a clue, but I'm really not worried about drowning while drinking a glass of water. A couple of people have suggested a speech therapist. Right, that's for people with money. I'm not starving, but I've no money for the extravagances in life like specialized medical care. 

So what do I do to address my FTD aggressive symptom? I spend more and more time alone. Don't isolate or hermitize, but behavior modification needs to be addressed. Avoid people for the most part, except a few I banter with at Starbucks. I avoid major trouble that might have me wind up in Assisted Living. Oh, excuse me. Those with behavioral issues usually wind up in a secure dementia facility. Sorry, not for Howard. When the times right I'd rather grab a bottle of wine, head out for a walk in the Arizona desert and become rattlesnake food. 

So was that was a pretty good FTD rant?

Aggressiveness is just one of the wonderful revolving door of symptoms we with FTD face and combat daily. My symptom smorgasbord includes non-stop incessant chatter or FTD blabbermouth syndrome, hypersexuality, insomnia, sensory overload overstimulation to noise and crowds, eating disorder, impaired judgement and reasoning, exhaustion and memory impairment that's probably causing me to forget what I'm forgetting. 

Yes, I laugh and still manage to have a good time and make the most of a life gone awry. Has my life gone awry? No, life is life and sometimes life turns to shit. I consider my life "Good Shit Mon." Pretend there was a Jamaican accent to that. Laughing is my weapon for battling FTD's Number One Enemy: Depression. So far I'm kicking depressions ass. That pesky parasite is just not allowed back into my life. Lifetime ban. 

So what do I do? Just keep living life. Find happiness and purpose every day. Get my ass up and out to Starbucks 7 days a week, like I've been doing for the last 2 years. Keep my routine in tact and keep on keeping on. A few hours in Starbucks and I'm usually exhausted at home till the next day. But I did something and that's huge. I showered, shaved and got the fuck out the door. I got out and maybe I blogged, wrote, bantered or just checked out nice butts. In FTD world, this is as major accomplishment that one can sometimes only pray for. Faced the FTD monster that sucks the life out of you and won. One day at a time we fight, one day at a time we win.

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

Where there's Yin, there's Yang. Yang comes in the form of my new girlfriend Terri. Life and love goes on even in dire health circumstances.  FTD rips apart families and relationships. Many find themselves sick and alone. Even with FTD life and love goes on. Many, yes many with FTD in my FTD Patient Support Group magically found love back in there lives. Some have even gotten married. Love finds a way. Terri and I see each other once a week on average and Terri knows I don't want another caregiver. Yes, she does help me and I'm appreciative, but it's not and will not be a caregiver relationship. 

Terri contacted me over a year ago about FTD. One of thousands of request for information I receive. At the time I was living in NYC, had a girlfriend and moving wasn't even in the thought process. Life happens and I wound up in Arizona. Of course I checked Terri out on the web and she was hot. Yes, I've FTD but am also a man which makes me a genetic asshole by birth. One day out of the blue, sent her an email asking her out on a blind date. She was shocked, but said yes.

Terri's in the medical community and works in a Psychiatric Hospital doing assessments, discharge planning etc. She understands FTD and has worked with FTD'ers. I might be losing my mind to FTD, but I'm still a lot of fun and we both share our mutual dedication of hard, challenging work. We're companions, buddies, friends, lovers and have a deep mutual respect for each other. Both of us have been around the block of life. Terri's attitude is she would rather have a "short, spectacular relationship with me, than a long mediocre relationship." We both know I've FTD and where that road that leads. It is what it is and we have what we have. What we have is good. Terri is incredibly supportive and does the best she can when I'm having those FTD moments. What more can I ask. She wrote to me, "Guess I'm an FTD girlfriend-in-training" after a small FTD induced spat. I'm a lucky guy and realize it.

I consider every date our first date and treat it as such with the excitement and passion it deserves. 

I promised Terri never to get complacent in our relationship. I bust my ass doing the little and big things to make sure she knows she's loved and appreciated. I've FTD and take nothing in life for granted. Apathy can take a hike. I'll kick it's ass to. Last Monday, I randomly dropped off roses for her at work. Yep, I FTD'ed her. Left it down by the main desk for her. She later sent me the above pic of them on her desk. In turn Terri is funny, sassy, intelligent, loving and incredibly loyal. I fight like hell to keep my symptoms in check for our relationship, but I've that good old FTD diminished filter which leads to hilarious moments or not. Last week while out at dinner I announced out loud the baby at the next table should be duct taped. How about dem Yankees?………

* I run a private FTD Patient Support Group on Facebook.  The groups for FTD Patients Only and 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

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. 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. All help is deeply appreciated:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

"Ask the FTD Patients" group

I treasure the good times and nice surprises in life now. Received this from the U.S. National Library of Medicine asking permission to include my FTD blog in it's collection. I'm humbled and honored that my work will be archived and made available to help those now and in the future. 

Dear Mr. Glick,

The U.S. National Library of Medicine (NLM) is building an online archive of Web content as part of its mission to collect, preserve, and make available to the public materials that provide information in medicine and public health, and document their histories.  NLM wishes to include your blog, available athttp://earlydementiasupport.blogspot.com/, in this collection.

We are requesting permission to use Web archiving software to make an archival copy — essentially a snapshot — of how your site appears over time, and to make the content available to researchers through NLM. Including FTD/Dementia Support Blog in this online archive will greatly enhance the value of the Library’s collection. 

Thank you for your time and attention in this matter. We would greatly appreciate your reply verifying your approval. Please feel free to contact us with questions. 

Warm regards,

Sandy

Sandra Taylor
Digital Manuscripts Technician
History of Medicine Division
Room 38/B2E21
National Library of Medicine
8600 Rockville Pike, MSC 3819
Bethesda, MD 20894

The National Library of Medicine is part of the National Institutes of Health, U.S. Department of Health and Human Services.

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

 Announcing a new FTD online group 

"Ask the FTD Patients"

"Ask the FTD Patients" is a Facebook group made from the 

80+ patient members of the FTD Patient Support Group. The purpose is to answer questions from caregivers, loved ones and the medical community. 

FTD is a rare disease and it's so tough getting answers and understanding behaviors, medications and diagnosis's.  We are hoping that we who are diagnosed can contribute and help those in the FTD community gain further knowledge through our first hand experience and give back to society.

Participating are patients with all the FTD variants and all types of living situations. Some live alone, with family or in assisted living. We have experience on medications and the medical community. All of us have some degree of awareness and insight and all have firm FTD diagnoses with scans. 

"Ask the FTD Patients" is a 'questions only' group and not a support group for venting. All questions are screened by moderators and administrators who are people diagnosed with FTD. To join, just type in Ask the Patients in the blue Facebook search bar.

Here is a link to join Facebook. You can use a fictitious name.
Facebook signup

The sole purpose of this group is to help others and further awareness of FTD.

Howard

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

* I run a private FTD Patient Support Group on Facebook.  The groups for FTD Patients Only and 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

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. 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. All help is deeply appreciated:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

Inappropriateness

You Are Not Alone!

* I run a private FTD Patient Support Group on Facebook.  The groups for FTD Patients Only and 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
--------------------------------------------------------------------------------

Really upset last night. Drank a bottle of $2.99 Trader Joe's wine. Hurt someone yesterday and kept having a vision of her face. Was at Starbucks in the afternoon for round 2. Sbux was empty with no line. One of the workers who I to friendly with had her back to me. A little while passed and I made an unnaturally loud Uh, huh. She turned around smiled. When she arrived at the register I told her I told her I shouldn't have called her because I was really enjoying looking at her ass. Can't put into words the hurt and shock on her face. Can't describe the visceral reaction this had on me. This is a young, early 20's elementary school teacher that worked Starbucks as a second job. Rare I use FTD Awareness cards, but pulled one out of my wallet. Explained FTD to her and she understood. Explained I'm sick and not aware what I'm saying is wrong and hurtful when I say it.

The revolving door of FTD symptoms stops when you die. Can't tell you the amount of nights in NYC I awoke, awoke crying. Affected by what I said during the day. Not knowing or recognizing the person saying disturbing things and acting inappropriately. No longer knowing the person that's me. Being awake can be a nightmare. I haven't gotten better since NYC. I'm losing my awareness and getting apathetic. Sitting here numb and in shock. Doing the best I can to live a happy, productive life while I'm losing me to FTD.

Was told by someone that I've just about stopped cursing both in public and in my writings. Yippee. Wasn't aware and couldn't care less. 

To die quickly from FTD or slowly from FTD? People tell me I'm lucky. Not feeling so lucky right now. 

Heading home now from Starbucks. 9:10am. My day is over. Living this life, writing this blog. Not sure what to think anymore. Just hoping this blog helps further awareness of FTD. That's what it's all about……...

Howard

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone modestly with no caregiver. 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. All help is deeply appreciated:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

AFTD Education Conference 2014

The Annual AFTD Conference 
White Plains, NY 
(just outside NYC) on March 14, 2014.
(10am-6pm. AFTD social event following meeting)

Caregivers, medical personel as well as patients are invited to the conference. Last year we had about 12 patients attending. Many are signed up so far this year. 

Learn about the disease that has affected our lives and families. Learn new ways of coping, strategizing towards the future and find out the latest efforts towards a cure from the best FTD specializing medical minds in the country.

Since FTD is such a rare disease, this is an opportunity to see your not alone and learn different tecqniques of dealing with FTD. 

I will be co-hosting a session for those diagnosed with FTD: "Making a New Life After Being Diagnosed."

Besides being educated this will be an excellent conference to network and help set up new support groups for patients and caregivers.

I will be organizing a separate informal dinner for just patients and there companions Thursday March 13th at 7pm close to the hotel. We have 13 signed up for that dinner so far. Please email me at howardglickftd@gmail.com to add yourselves to the reservation.

Here are the links to the Conference and the agenda:

2014 AFTD North American Education Conference Information Link

Respite Grants for Travel

Conference Agenda

Shuttle from LaGuardia or JFK airports. 
Red Dot Shuttle 800-673-3368

Where:
Crowne Plaza - White Plains
66 Hale Avenue
White Plains, NY 10601
914-682-0050

You Are Not Alone!

* I run a private FTD Patient Support Group on Facebook.  The groups for FTD Patients Only and 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

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. 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. All help is deeply appreciated:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

FTD Apathy

* I run a private FTD Patient Support Group on Facebook.  The groups for FTD Patients Only and 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

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

Going into 2014 I need to realistically assess what I can accomplish. No time to mourn what skills I've lost and am losing. I've the desire to forge ahead, be productive and keep living an awesome life.

Doing my New Years 3 step FTD red sneaker dance. 3 restaurants, in/out of each within seconds. Then home to wine and 11pm bedtime.

Heart wrenching pain. My kids left a couple of weeks ago and I think about them constantly. I think how they said how emotionally distant I was. They also noticed and told me it was the biggest change they noticed in me from the previous year. I think about how I no longer love or have feeling like I used to. I have to dig deep and fight for love and feeling. It's still there and needs to be awakened. The quality and type is different, but I'm in touch when told. FTD and apathy. 

They visited for a week. I noticed a picture on Facebook of my friend Marc, hugging his son Juno and realized I kissed and hugged them once. That was days before at the airport when I picked them up. I immediately went and hugged and kissed both of them. Made it a priority to hug and kiss them frequently from that point on. Stuck it in my diminished brain routine, like going to Starbucks each morning. Yes, I felt the emotion and the love, but it doesn't come naturally. I need to somehow be made aware and work on it. 

Can't describe the crushing feeling of fighting and losing the FTD battle to keep feelings that make humans human. 

The picture of my friend Marc brought me back to reality. This insidious disease called FTD is stealing my life away. Even when with them I felt distant, but a kiss and hug brought back those feelings. They were younger when I started showing symptoms and was so out of control being on up to 17 pills a day and placed in a medically induced fog. Never got to teach him father/son things when he was younger. I sit here feeling like shit because I wanted to teach my son about basketball, baseball and football while he was during his visit. Even recorded it to teach him the rules. He's 15 now. I never did. Fell headfirst into the apathetic, lethargic way of FTD and it never got done. Spent to much time alone in my isolated FTD state while they were here. Have been thinking and dreaming of having him come for a father/son weekend of just sports. 
Can't afford to do it, can't afford not to. 

I've no food at home. We laughed how hunger got them out the door. I did explain to them in the month prior I was sick for almost a week. Stomach cramps and much bathroom time. Thought I had a stomach virus till I bought new milk for my Cheerios. It tasted different. The milk I was using was spoiled. Have to love FTD.

They've struggled through the train wreck of FTD and are making it. Been a rough ride. There mom deserves much of the credit. 

Yesterday was NFL Football playoff games. Have been bouncing around since I moved to Scottsdale, AZ trying to find a comfort zone. Most of the time I'm alone. People are okay in short doses. Can't keep track of conversations when I'm in a group. Get lost and hear all background noise and conversations around me. Sunday mornings I hang with the Starbucks weekend warriors. Always a couple of hours of fun and enlightening conversation from an assortment of characters. The leader of the band is a retired political/government crustacean who is opinionated, forthright and funny. Jeffrey and his wife are polar opposites and the perfect couple. Had an interesting head injury/dementia conversation with former NHL player Perry Anderson. Not being a hockey fan, I had to Google Perry who an "enforcer" in a long career. You couldn't meet a nicer, well spoken man. Have met many sports pro's since I moved here and have really been enlightened as to true cost our entertainment is to there health. I always leave the weekend encounters  like I just starred in a "Seinfeld" episode. I try to keep low key on the FTD thing. You know me, once I get started I don't stop. Trust me, not a day goes by where there aren't new victims to my FTD awareness crusade. 

I left Starbucks and went to 4 different places trying to figure out a Sunday football lunch. In the end went back to one of the places I already had been to and got a cheap Mexican Burrito. Need to get back on my salad and wings 7 day a week routine. Healthier, cheaper and keeps confusion out of my life. Sort of like Albert Einstein wearing the same black suit all the time, so he had more time to focus on the world at large. Went out late afternoon to watch the Seattle Seahawks football game at my "Wing" place called Stax. Was excited about the game. Placed my order as soon as I entered. Stax is quiet and not a sports bar. The noise level to me is deafening. Didn't even make it 10 minutes. The owner knows me/FTD. Asked him to make the order to go and waited outside in my Seahawks jersey.

Have been having many issues with blogging and other work because I've been having brain to keyboard difficulty. My girlfriend figured it out. FTD - The land of diminishing skills. We're figuring out options for moving forward.

Yes, Howard has a new girlfriend. Intelligent, beautiful, sassy, incredibly supportive and funny. She is in the medical field and quite familiar with FTD. Soon out of the gate we had a huge misunderstanding. It was an "FTD" thing. The next morning I received a text from Terri stating she's realizes she's an  
"FTD Girlfriend-In-Training". l almost peed myself.
More to follow…………..after all, you are an 
"FTD Audience-In-Training".

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. All help is deeply appreciated:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

FTD: What about the Children?

* I run a private FTD Patient Support Group on Facebook.  The groups for FTD Patients Only and 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

Off we go into the New Year. The end of the year I tried changing my routine to somehow force myself into "book writing" mode. Seems like every year I change around my routines that work and wind up grinding to a halt. I just redecorated Starbucks and brought it back to pre-holiday Howard FTD comfort level.  Back in the captains chair and off in the right direction. No more running around going crazy trying to find a comfortable place and alter what works. Next time you read that I need to alter my routine to be more productive, please give me a swift kick n the buttocks or a baseball bat hit to the head. Knock some sense into me. Everything I'm doing is getting done in it's time. Yes, "All in good time, my pretty."

Seeing my kids was wonderful. I want to thank those of you that sent gift cards and cash. It helped tremendously and I'm deeply appreciative of the help. My kids are 15 and 20. They were 5 and 10 years old when I started showing symptoms. We often hear from spouses about the devastating changes that happen when FTD strikes, but our most important commodity is our children. How does FTD effect them and there lives? Nothing short of devastating. FTD is bad enough, but being misdiagnosed and drugged up out of my mind by a vacant medical community made things much, much worse. I've few memories from back then, probably better that way I'm told. I was hoping to film my kids for the documentary, "Howard's Brain" and have them discuss what it was like back then. At first they agreed, but then right before we were to film, they said no. To many painful memories that they didn't want to relive. Guess I was being insensitive in not asking that from the beginning. My daughter brought up how I ruined her Bat Mitzvah and how she didn't speak to me for a year. My son didn't even have one. My behavior was so bizarre and disturbing in my actions towards them and how off I was. Can't tell you how vacant I feel now missing them growing up and now sort of being an outsider. I know I'm not, but I'm distant and one week a year isn't enough to pull things together. Not even sure if frequency of visits would help this. I fight like hell to keep keep FTD symptoms at bay and overcome them with alternate actions, but there's only so much I can do. 

Asked them at the end of this trip if they noticed anything different about me since a year ago. They both agreed that I'm more emotionally detached. That's the main thing they noticed over last year.  I know it. I know it and it hurts like hell. Would love to write here a solution, an action or problem solver. Sometimes in life there are no answers or solutions. I can only hope to see my kids more in the future and become closer and have a further understanding. FTD sucks. My children also noticed I've more energy than last year. I explained to them because I no longer take Namenda/Memantine for FTD. The last 2 pills (Aricept/Namenda) the medical community recommended I take for FTD are now on medications to avoid with FTD list. Maybe someday the medical community will get it's shit together with FTD. Right now the medical community is on my "avoid" list. No question I'm doing better without there ,"No answer, pretend answers." Come out with a cure and I'll be first on line, otherwise don't call me, I'll call you.

AFTD is addressing the issue of kids with an FTD parent. AFTD will be launching a new website………..

AFTD Sharon Denny:

AFTD is developing and exciting new website for kids and teens who have a parent with FTD. We will begin to populate the site prior to its launch in Spring 2014. Children (ages 12 and under) are invited to submit a personal story, poem or work of are about their experience to be featured on the site. For more information email: kidsandteens@theaftd.org. (Submissions from teens with be requested soon.

AFTD also has the booklet available, "What about the Kids?" The full booklet is below and your can order it or quantities from AFTD.

"What About the Kids"

Will be blogging again soon. It's been a while and this is a new start. At this very moment I'm feeling tremendous pain of loss of family, loss of a life that has been decimated by FTD. 

I plan to articulate my life with FTD. Both here and in my book. I constantly read from caregivers and the medical community how FTD patients are acting, behaving and feeling. I intend to keep explaining what's in FTD patients heads.

We've a lot of work to do………………

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. All help is deeply appreciated:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

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. 

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

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