FTD/Dementia Support Group

Kickstarter

2012-03-08T08:25:00.000-05:00

click link to see trailer and donate!

http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

3/8/2012 12:46pm EST Just reached $10,000

Halfway There!!!

~~We're almost halfway to our goal of $20,000.~~ We need your donation now to continue filming and finish the film "Howard's Brain".

A little about "Kickstarter", it's a site that allows people to discover, watch and contribute to fund a project. If the project meets its goals in a set period of time, the project is funded, if it doesn't meet the established threshold, the monies collected are returned to the donors.

We hardly ever beseech each other to contribute to worthy causes yet, this one is so personal and close to home for most of you that I'm asking you to do that now.

This film might be starring me, but it's really about all the patients, families, caregivers and lives that have been devastated by FTD.

If your reading this there is good chance you are family member, caregiver, friend or someone in the health industry directly related to FTD. You know how devastating FTD is. The film is not only about devastation, it's about me finding purpose in life again and grasping at a life that is going away. There's no question my health is declining, but I'm choosing life and to make the most of it till the very end.

Please watch the trailer and if you're moved, donate something towards the project.

Maybe circulate the link to your communities, via e mail or post on FaceBook? Get your community / family to support this project in this way. Joe Becker of Thinkfilm is the filmmaker, he's won Emmys for TV's "West Wing" and produced hundred's of other projects including the short FTD caregiver film, "it is What it is". This is a real opportunity to get this film made.

"Howard's Brain" being made will shine a light on this awful disease and raise more funds for research and an eventual cure.

Donors who pledge $1+ will receive something special depending on the amount. $50 pledge will have there name listed in a "Special Thanks" in the film credits. Please go to the site to see the all pledge gifts.

Don't let this opportunity slip away from us.

We need your help now.
Thank you,

Howard Glick
http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

FTD - Me Wrong? "Howard's Brain" update

2012-03-06T08:14:00.001-05:00

click link to see trailer and donate!

http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

We're on target being 40% funded toward's our goal of $20,000. We need your help to expose FTD. Please donate to make this film a reality.

Please help fund "Howard's Brain"

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

"Was there ever a time when you thought you were OK but there was something wrong with other people"?

Hi P,

All the time. I constantly think I'm right and others are wrong. Even when I'm proved wrong and know I'm wrong, I still don't understand why I'm wrong, even though I'm aware I'm wrong.

There have been many incidents where I know I'm 100% right. All of a sudden the person I'm with is so hurt and so in shock that I said what I said or could be thinking they way I'm thinking. I know I'm wrong, but have absolutely no idea why I'm wrong. I go to other friends or people and tell them what happened. I then get that sad look and grimace and I know I'm off.

I've accepted the fact that I have FTD, my brain is damaged and my thought process is corrupt. I can only try to minimize the effect I have on others. These days I've been forcing myself to slow down and be quieter when I'm in a serious conversation . I've been somewhat successful (I think). I'm still the incessant talking, no-stop chattering FTD'er most of the time, but I'm working on identifying those moments when I hurt people and screw up. I'm trying to minimize the damage I do to other people.

Anyone that knows me, knows that I'm incredibly logical. It's just my judgement, reasoning and common sense that's all screwed up.

Living life this way is a nightmare. The movie, "Howard's Brain" shows how operating with a damaged brain can turn a normal situation to absolute chaos for me and those around me.
I can only hope people keep donating so we can show the insidious face of FTD and work toward's getting a cure.

Every day FTD poses new challenges. I can only hope to minimize the pain to others and somehow keep my sanity, while I slowly losing my mind.

Howard

FTD Film - "Howard's Brain"

2012-02-29T08:07:00.000-05:00

click link to see trailer and donate!
http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

Please help fund "Howard's Brain"

We've filmed over 100 hours of me living life with FTD. FTD is a life of horror, strangeness and adventures. It's a seesaw ride in which both FTD and me taking turns kicking each others asses.

I've lost and just about everything one values in life, yet I've battled back to give myself a life of purpose and happiness.

It's a life of extremes with me either crying or laughing. People around me are either hysterical laughing or chasing me down the street.

Please visit the link above or below to get the latest update of "Howard's Brain". You will see actual footage as well as a short commentary from seasoned filmmaker Joe Becker. Joe Becker's credits include the FTD short film, "It is What it is" and the TV show "West Wing".

This film is intended to educate and drive further public awareness of FTD. The greater public awareness, the more funding there will be towards research and an eventual cure.

The "Howard's Brain" film project has been a labor of love. Many people have donated countless hours and financial resources.

The HD Video camera equipment cost over $2,000 and was donated by Joe Becker. Joe also has spent plenty of resources on UPS, as well as the torture of watching my ugly mug on film for hours at a time. Marc Turkel, a lifelong friend flew to NYC from Seattle and spent 3 weeks filming me in November. Yesterday Marc donated $150.00 to help the get the film complete. Then there was Tamara, David, Lena, Stephanie and countless others that donated time and energy in helping me film. They all had the pleasure of me FTDing them and driving them crazy.

I've dedicated my life to fighting FTD. I'm putting my heart and soul into this film, the FTD Support blog and the FTD Patient Support group.

The film discloses the most intimate moments of life with FTD. I openly talk about the nightmare that Tamara went through for 6+ years of misdiagnosis, first in a loving relationship and then as a caregiver running me to doctors offices, shock therapy and dealing with me in a medically induced fog. Her helpless feeling of dealing with doctors that kept changing diagnosis's and her knowing I wasn't bipolar. Her having to rush home because I was wandering the streets naked. The absolute hell her life turned into because of FTD. My story is similar to most FTD caregivers go through.

Then my own feelings of hopelessness of a life turned upside down. A twenty year career gone, my children thinking I'm crazy, most friends and family disappearing, bankruptcy, medical hell including 17 pills a day, 50+ electric shock treatments, a VNS device implanted in my chest., countless shrinks, doctors and hospitals. Then the low point, a suicide attempt and 7 weeks of hospitalization where it was discovered I had FTD. Coming home to an empty apartment, broke and on food stamps, days of eating cheerios and water, horrible home health aides, cancer and horrible side effects to Aricept where I thought I was about to die from FTD. All the pain and hardship of how FTD rips lives apart is discussed in excruciating detail on film. Much of it in real time because the nightmare never really goes away.

Now I've fought and clawed my way back without medications to a life of purpose and happiness.

I've found the best and the brightest medical staff. I have real friends and a real close network of community support that helps me with everything from writing checks to making sure I have food at home. I belong to a support group, Riverstone Memory Club which helped get me of my feet and am in contact with AFTD 7 days a week who constantly reassures me not to worry because I am insane :-)

I'm in a constant battle each moment of the day trying to manage the symptoms. Where I'm somewhat successful, FTD rears it's ugly head every day with me always having to talk myself out of complicated situations. FTD is progressing and my mind is slowly liquifying. It's apparent to all that know me well that my life is slipping away, but I'll continue to film and live.

I still date, party and continually grasp to have a life which is quickly disappearing.

Life goes on and I have a life. Not one of my choosing, but I'm making the most of it and I'm extremely proud of my accomplishments.

I've never asked for help from anyone. I'm now asking you to please go to the link below, watch the 8 minute film explaining what we're trying to accomplish and contribute anything you can. This way we can complete this project and fight FTD.

Anyone who has been involved with this documentary is very excited. They've seen me talk and act without any inhibitions. I discuss and say absolutely anything on or off film and couldn't care less. There is absolutely no bullshit in me and I speak the truth and say what I will, regardless of the consequences. For me, I'm just living life. For the world looking in it's a real live look of what life is like with FTD.

"Howard's Brain" has an excellent shot at going mainstream and really making the public aware of this horrible disease. We are now in early production mode and need funding.

We need to raise minimum $20,000.00 before March 29th for the project to move forward.

Please donate whatever you can. Even $5 will help spread the word about FTD.

Please share this site, retweet or spread the word of this project by any means necessary.

I've been to FTD Hell, lets keep others from going there.

click here

http://www.kickstarter.com/projects/thinkfilm/"Howard's Brain"

Please help fund "Howard's Brain"

Thank you,
Howard

AFTD Education Conference 2012

2012-02-28T08:30:00.002-05:00

The AFTD Education Conference is in Atlanta on April 27, 2012.

This is the first time patients as well as caregivers have been invited to the conference. This would be a good place for us to get educated on FTD as well as have our voice heard as to the needs of patients.

Respite grants for travel are available.

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

Here are the links to the Conference and the agenda

http://www.theaftd.org/about/atlanta-2012-education-conference-and-annual-meeting

http://www.theaftd.org/wp-content/uploads/2012/01/conf-flyer-2012.pdf

Howard

Lunch with a fellow FTD'er

2012-02-17T11:32:00.000-05:00

It took 20 months, but I finally met someone else with FTD.
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One of my struggles with FTD is never having any contact with anyone else that suffers from FTD. Anyone who has FTD knows the isolation and day to day struggles we go through while slowly losing our minds.

Being alone with FTD is difficult.

I struggle all the time to make my life easier.

I will refine that last statement.

I'm doing fine and work extremely hard on my mindset and attitude to keep it that way.

Diana flew up to NYC from Tampa for the day. She had a doctors appointment and we were to meet for lunch. We hit it off from the moment we met. It became very clear that we were mirror images of ourselves.

Diana took me to an Italian restaurant for lunch. Okay, put two FTD'ers together for lunch and of course the police will be involved, we'll be eating food off other people plates and making a total scene.

Sorry, no such luck. These two FTD Patient Support Group members who have no caregivers, bust there butts to maintain a normal as possible life against all odds.

Diana is a wonderful person who was well accomplished as a Senior VP at Wells Fargo Investments. She is funny, direct and very FTD'ish. She has a no shit, take charge attitude like me. We both have traveled extensively and Diane has absolutely no plans on giving up on life and will live it to the end like me. She is heading early this summer to the Amazon for an adventurous vacation.Diana has a wonderful family history which extends back to the Mayflower.

We we're both self absorbed, listening but cutting each other off to get a word in.

Amazing how we've similar day to day disabling struggles do. We talked about handling the basics in life and what a chore it's become. Basic checking account. I never had a chance to tell Diana my struggles, so here we go. I can't even balance a checkbook or write checks. This has gone on for years. Of course I don't have money to create many bills but of course there some. I'm lucky to have a Chase branch right next to me whose employees he me write checks when I need to pay bills. The employees of Chase are wonderful and are always willing to help me. There familiar with my FTD difficulties.

Diana was lucky enough to get a more recent diagnosis of FTD. A few years and clearer diagnostic tools make a world of difference in learning and making one's fate. She has serious health issues, but refuses to let that impede her life. Diana is a go getter and I can't tell you how refreshing it was to spend time with her.

We both even have Unum Long Term Disability plans. Fortunately for her, Diana didn't get misdiagnosed for years and Unum recognizes she has FTD and gives her benefits she's entitled to. My diagnosis is now crystal clear with plenty of medical facts backing it. We even have brain scans showing FTD progression over the years. UNUM is of course a "for profit" company that is screwing me because it's easy to turn a blind eye on someone whose sick with terminal illness that didn't have a clear diagnosis from the outset.

I will be doing addressing UNUM's disgusting track record denying legitimately disabled people there benefits as well as US government class action suits as soon as I get the go ahead from my lawyer.

Diana was so helpful trying to help me with future plans getting organized when I somehow start receiving funds from one of the many ventures I'm into. For me, it's difficult to see. Yesterday I was happy to see NY State was kind enough to give me $19 for the next month or 63 cents a day for food stamps.

Diana was kind enough to offer me assistance numerous times. I told her what I tell everyone. I appreciate the offer. Thank you, but I want for nothing. My ex-partner Tamara has been helping me and others assist me in different ways.

I live a very limited lifestyle, but so what. I have a life. It's a good life that I'm proud of. Is it one I would choose, no but it is what it is and I'll make the most of it.

People constantly ask me what are my future plans with regard to long term care. How can I even think about that when I'm barely making it financially. My answer is sooner of later they'll scrape me off my apartment floor.

It was so nice to have lunch with Diana and know we can count on each other for friendship. I'm looking forward to seeing her in June when she comes back to NYC.

Diana & I know and get each other.

The FTD Patient Support Group is filled with people like Diana that will take the hand life has given them and will keep going. Many of us in the group are alone and are making it on sheer guts and determination. This isn't something new to us. This is how we've always lived our lives and will continue to carry on.

I look forward to meeting other members of the group.

Howard

Valentines Day and FTD

2012-02-14T09:07:00.003-05:00

One of the roughest things that someone with FTD or Dementia can find themselves with is alone. Many people are used to it, but not me. I've been in many good relationships, but try dating with FTD.

Of course I get very lonely and about 6 months ago a friend of mine I suggested I join a dating site, OkCupid.

How is dating with FTD?

When you mention FTD/Dementia, you might as well go on a date with a vampire and instead of bringing a pint of blood, you bring garlic and crosses.

I went on approximately 10 dates and never made it to a 2nd date. The dates went from bad to worse. I met most at cafes or Starbucks in Manhattan. Most of the women were really nice. I was excited at the beginning of each date and usually wound up less than excited on the way home.

Of course I don't lie and FTD/ Dementia does come up on the first date sooner or later.

Some highlights:

A math professor who told me after 2 minutes that she was seeing someone on a regular basis, but just used OkCupid to meet new people. She decided to have brunch and ran up the bill.

An Emmy award winning comedian who I met at Starbucks. We talked for about 40 minutes and all of a sudden just got up and walked out. Guess the joke was on me.

A lawyer from Brooklyn who somehow did a background check on me knowing only my first name. Right before our first date she all of sudden knew about FTD, Forbes article, Blog, Israeli army, etc. We never made it to the 1st date.

A graphic artist who I met at the International Photograph Museum. She was 5 minutes late and called me on my cell phone. Turned out I was looking right at her 10 feet away. She barely looked like the person her photograph represented. Easily 10 years older than her picture. We spent 35 minutes in uncomfortable silence walking through the museum. Yes, me silent. You know it was bad.

This was in November and my friend Marc was in from Seattle helping me with the film. I've known Marc since I was 5 years old and he's always been straight with me. I asked him if he thought I might ever have another woman in my life. A couple of my challenges are:

53 years old

FTD

Cancer

home heath aide

$1.45 a day in food stamps

Marc told me I didn't have much of a chance.

I brought the situation up at "Riverstone Memory Club." Many of members were also single and lonely.

I announced to the group my intention of starting my own dating service. You've heard of E-Harmony,

J-Date and Match.com

My dating service will be called D-Date or Dementia Date.

It will be a dating service for people suffering from one of the Dementias or Memory Loss. You can date the same person again even if it doesn't work out after 3 months because chances are you won't remember them anyway. All your dates will be like exciting first dates.

If the date doesn't work out. Forget about it.

Well, it's been three months since that insightful conversation with Marc. Indeed my situation has changed. Now my challenges are:

54 years old
FTD
Cancer
Heart Disease
$.63 cents a day in food stamps

ON THIS VALENTINE'S DAY, I NOW HAVE AN INTELLIGENT, BEAUTIFUL NEW WOMAN IN MY LIFE AND WE'VE STARTED AN EXCITING NEW RELATIONSHIP. LIFE IS ABSOLUTELY WONDERFUL. EACH NIGHT WHEN I GO TO SLEEP, I CAN'T WAIT TO WAKE AND FACE THE NEW DAY AS WELL AS SEE THE NEW WOMAN IN MY LIFE.

HAPPY VALENTINES DAY TO ALL!!!

FTD - Drugged Up

2012-02-10T10:00:00.000-05:00

First of all, for those out there with FTD, there is a private Facebook FTD Patient Support Group you can join. It has 36 members and is a positive, informative group. Please contact me for details of scroll down to the article which gives instructions.
Howard

This is directly off my medical charts. I'm probably forgetting a few.

wellbutin

seroquel

zelapar

selegiline patch

ambien

lunesta

hydroxicine

depakote

neurontine

lithium

ativan

lamictal

EMSAM patch

risperidone

xanax

doxepin

zoloft

lexapro

prozac

klonopin

lamotrigine

Halcion

The above medications are anti-psychotics, anti-anxiety, antidepressant and sleep medications.

These are the meds I was on while on pharmaceutical cocktails for 6+ years of being incorrectly diagnosed as bipolar. I say incorrectly and not misdiagnosed because I have a lot of respect for most of the Doctors and I know they tried there best with the information they had.

FTD mimics bipolar. Over 50% of FTD cases are misdiagnosed as a mental illness.

There are no FDA approved medications for FTD. FTD is untreatable, unstoppable and incurable.

I have been off all the above listed medications since June 2010 when I was told the PET scan and neuropsych testing showed I had FTD.

Friends and support groups are the best therapy to try and manage the symptoms of FTD. Even though I'm doing much better with my mood improved and me functioning much better. FTD continually takes me by surprise by showing it's ugly face and tries to destroy anything I have left in life.

The medical community and most caregivers agree that the best way to handle those with FTD is to drug them up and make them almost incoherent. That makes life easier for everyone. What does a caregiver do for a loved one that is now different from the person they've known for years. They don't want to abandon them, but can barely deal will them. Everyones life gets ruined by FTD and it's just easier in many cases to drug the person, than try to help them be themselves to somehow be the person they were. The more you drug people up with FTD, the less they use there brain and the faster and further they slip.

There are many medical theories to FTD'ers and the use of their brain. One theory is how the brains with FTD function at a higher level earlier on, even before symptoms show because the brain knows it's in trouble. I'm told frequently how high functioning I am, even though I drive everyone crazy.

Then there's a theory that since part of the brain is being systematically destroyed, other parts or the brain aggressively make up for it.

I'll let the scholars argue to which if either of these theories are correct. Me, I'll just say there are many with FTD that are wasting away on drugs because they don't have the correct support to help them and there are absolutely no programs or support groups targeting those with FTD.

I started my own on-line FTD Patient Support Group. It now has 36 members and is a large success. Yet besides AFTD, I cannot find anyone to help. I'm told there to many legal ramifications or unknowns. In other words, plenty of excuses, no actions. Therefore there many with FTD out there that are getting no support. Caregivers and loved ones get support, but not patients. The disease is to complicated.

I can only hope someone has the balls out there to do the right thing because FTD patients are out there and need help.

I fight to manage the symptoms every moment of every day. I have no caregiver and can't ever see there being one. It's virtually impossible for just about anyone to put with me because of the behaviors that constantly manifest from FTD.

I'm in a losing battle, but am happy to fight it.

I can only judge what I'm doing with my life and shouldn't judge others. Yet, I know now of others that are suffering and that can coexist without being drugged up.

Me, my life is sheer hell a good deal of the time but so what. I've incredible moments of happiness and sense of accomplishment from things I'm doing.

I do have to live constantly on the edge because the long term disability company UNUM, a 6 billion dollar company who has been under government investigation and fined for not paying claims has decided not to pay my claim.

Unum knows I have FTD. The medical evidence that I had it when I was under there policy is indisputable. I know plenty of others with FTD that have Unum policies, that are getting there disability. Yet, it's simple corporate greed and keeping up profits. I have a lawyer and a case will take years. Shame on Unum because they know I don't have years. We're not talking about a huge amount of money, just enough for me to get the necessary medical care and see my kids more than once a year.

It would be nice to plan for a long term facility and not scrapped off my apartment floor some day.

If anyone out there is with HR for any firm. I would investigate Unum closer before going with them as your long term disability carrier. You'll find they have many skeletons in there closet and routinely screw people who have there policies.

I am going to be starting a large campaign against Unum to make sure people are aware of what a despicable company there are.

All in all, I will not take drugs and I will keep fighting to educate, further public awareness and help those with FTD. This is what I've dedicated my life to.

Howard

FTD - Pills and Memory Loss

2012-02-07T08:34:00.003-05:00

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In my previous blog there were some inaccuracies in the piece I wrote about my Chiropractor. I apologize for the errors and it's been rewritten.

This alternative medicine works. Laurie has been working on me weekly since I've been diagnosed with FTD and there is no question that I leave her office feeling clearer with the ability to think better. There is no question that Laurie's work and friendship have been a clear contributor to me functioning so well with FTD. This is the only physical treatment that has helped me with FTD that I know consistently works .

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Thank you all for your well wishes. I've recovered and I'm back to living life. Of course there are some hiccups.

Yesterday, I was on the way to Steve's for a Superbowl party my cell phone went off reminding me to take my Namenda. Instantaneous panic ensued, followed by relief knowing that I keep extra pills in my backpack which I always have with me. I quickly took a pill before I forgot. I was at the bus stop filmng at the time and I hope the camera caught my immediate panic of the cell phone alarm going off and my first thought I had to rush home and then relief to realize my backup plan was working and I had extra pills with me in my backpack. Late last night when I got home and turned on my computer, my computer started flashing "Namenda" when it when on. I smiled. My other back up was in place. Luckily, I remembered taking the Namenda at the bus stop.

Other times, I can't remember if I indeed took it or didn't. Even though I remember remembering I forgot, I'm still not sure if I remembered to take the pill, when I remembered I forgot to take it.

Anyone with real memory loss knows the hurt and frustration over hearing from family and friends, "Oh yeah, I forget things to". It's a little different when you need to set up multiple alarms, notes, etc. to remember to take pills and even with all the backups you set up, you still forget without distraction in that brief moment after it goes off. The worry and fear about cooking and forgetting something's on the stovetop gets very real when you set up multiple timers and all of a sudden the smoke alarms is going off because you forget when the timers go off to go to the stove.

I used to be pissed off that I have Dementia and it's against NYC law to buy "hot" food with Food Stamps, but now since they lowered my food stamp allowance to $.63 cents a day I don't have to worry about it anymore.

The fear of having these memory issues and being institutionalized because you are a danger to yourself or others is very real. I write this blog at my own peril of Social Services knocking at my door because the messages I need to get across are very real to those suffering from FTD/memory loss and the public needs to be educated.

Those with FTD usually have memory issues that get worse as time goes on. I've had a combination of long term and short term memory problems. I never take them seriously, I try not to drive myself crazy. That is, till now.

After my heart surgery, the surgeon spoke to me of the importance of not forgetting Plavix and Aspirin each day or I could have a blood clot. That could have fatal consequences. Dr. Weiss was very concerned that I'd forget. He read my blog and knows I struggle with memory issues. I assured him I have protective measures set up so I don't forget. I have pill boxes with days of the week listed, 2 alarms that go off on my cell phone and computer that I stated earlier.

In a perfect world that be sufficient, but not FTD world. Not only is it a real concern forgetting to take my pills, there is another situation of me forgetting to renew my prescriptions.

I have 3 sets of meds to take and need to refill all three at different times every 30 days. Plus I need to make sure the refills are up to date or else they need to contact the doctors office and that could mean another couple of days. Of course this would only happen around a holiday which means not only would I be F'd, I would be in the ER begging for Plavix or worse. One of the reasons I've survived on my own with FTD is I'm always thinking three steps ahead. I decided to go to my community Pharmacy where they know me and my challenges.

This happened the day I left the hospital last week. I was on edge because a day earlier I had learned on the operating table I was having 3 stents placed and had a heart attack. As I said earlier, the surgeon, Dr. Weiss was very clear on the repercussions for forgetting this new med and aspirin.

I've been going to my local pharmacy for years and all the employees know me there. I'm always the same pain in the the ass. Like everywhere else they have a love me, hate me relationship. In all fairness I do joke around a lot, so sometimes people don't know whether I'm serious or kidding around. Two pharmacists were there and I explained I literally just came from the hospital and now had an additional 4 prescriptions for my heart. One of the pharmacists knows I have FTD, has been to my blog and realizes that I have short term memory issues. The other knew I had something, but sees me a spirited young 50's guys. I explained about the surgery and my concern about running out of Plavix at an inopportune moment and if they could work with me on this one prescription by making sure it was getting renewed timely. I was just asking for a phone call or some way to keep track so I wouldn't run out, not a daily reminder.

One of the pharmacists started started joking that I had no memory issues and a simple pill box would do. I tried to explain I had one and that's not the issue, but she kept jabbing away with jokes. I lost it telling her I'm barely keeping myself together and just asking for a little help and that this is a a serious situation and I guess I would have to find a different pharmacy. Of course, vulgarity was permissible at the time and I used a variety of choice expletives.

The other pharmacist who I know very well quickly came down from her perch and took charge of the situation. We got it resolved over the next day or so with the pharmacy going to help me build up a reserve of a few extra pills in case everything that can go wrong, does go wrong.

I don't have that luxury of having a service contact me or help me because my long term disability company, Unum has decided to screw me and not give me my disability for FTD which was covered under my plan while I was working. I'm doing the best I can, but if something does happen to me I hope someone goes after this disgraceful greedy company because they are keeping me from resources that are clearly helping keep me alive.

This morning I noticed that the pills from Sunday were still in the pill box. Obviously I screwed up. I also noticed there was one baby aspirin in two empty slots. Don't know what happened and I'm not going to worry about it.

This is just a moment in the life of an FTD'er who has a revolving door of serious issues every day that needs to be addressed. As each challenge happens, I'll address it to the best of my ability. Just can't help feeling that I'm starting to live on borrowed time.

It's a lovely day in NYC, I'm at Starbucks and life goes on.

Howard

FTD - Suicide

2012-02-01T10:44:00.004-05:00

Hi Everyone,

I started writing this a few weeks ago before having my heart surgery.

The topics of euthanasia and suicide have been brought up many times in many forums and groups. I have answered this before and have decided to post this to the public.

Hopefully sharing this will give others a more in depth understanding of life with FTD. Most of us with FTD have been misdiagnosed for years before getting a correct diagnosis. There are those out there that never find out.

I've been in and out of Columbia Presbyterian Hospital the last couple of days. Continuous EKG's and blood work. Looks like I have some heart issues. They want to monitor it till they get on top of it or admit me.

In the last year it's been FTD and Cancer. Might as well add bit of a heart problem and some leprosy to the mix.

I don’t believe there is a person alive with FTD or misdiagnosed like I've been that hasn't thought of suicide or euthanasia.

In May 2010 I went to Arlington Cemetery to visit the memorial of the 220 Marines that died in the barracks bombing in Beirut on October 23,1983. Although I was in the Israeli Army and not the US Marines, I spent time in Lebanon while in the IDF and had close unrelated military ties. I needed my own sense of closure.

I left the cemetery devastated after reading out loud the names of all the marines who died that day. I did have a roundtrip ticket to return to NYC.

My mindset was one of hopelessness.

I was on 17 powerful antipsychotic, antidepressant, anti anxiety pills a day for being what was thought bipolar. I had been through 50+ ECT’s and the VNS device implanted in my chest. Nothing worked. The love of my life was no longer my partner, but my babysitter. I was bankrupt, depressed and didn’t know what was wrong and why nothing would fix me. I was having suicidal thoughts for a long time now.

I was misdiagnosed for 6+ years as bipolar. I gave up and went back to the hotel room. Drank some tequila and took Ativan, Ambien as well as other pills and passed out. I was in a coma for 3 days and hospitalized for 7 weeks.

During those 7 weeks I lost the woman I loved, my stepfather of 37 years I loved died, I found out I wasn't bipolar and actually had FTD. They titrated me off the 17 pills I was on a day, told me I had a terminal illness and to make my end of life plans. I went home alone to a half empty apartment, the love of my life gone, broke and with a terminal illness. Then they gave me a medication for FTD which was known to have bad side effects for those with FTD. Another medical mistake. Aricept had me walking out into the streets of New York City in a haze. Cab drivers aim for you in NYC. I thought I was about to die. My neurologist found out after 4 months the hospital made a mistake. In those 4 months I also found out I had prostate cancer and had my prostate removed.

I haven’t had any suicidal thoughts since leaving the hospital after being diagnosed with FTD in June 2010.

It's a year and a half later now and my FTD is slowly progressing. I have no caregiver, I don't take any meds except Namenda, I'm broke on 63 cents a day on food stamps, cannot sustain myself financially and need help each month from charitable friends to survive. It's also very real that I have a very dark future on the horizon. I also found out a week ago that Unum, the long term disability company will ignore the overwhelming evidence put forth by my neurologist that I’ve been disabled with what we know now is FTD. They refuse to reinstate my disability. I haven’t been on one pill for over a year and a half or seen a psychiatrist once for being bipolar because I’m not. I’ve had proper treatment and therapy to learn to live and deal with FTD.

I struggle every moment of every day at trying to control the symptoms of FTD.

Maybe Unum thinks I forgot how to be bipolar. Unum has a history of not paying disabled people and have been sanctioned by the US government for it.

Have I given up? No way. I'm back and kicking ass until my last dying breathe. I have fought and clawed my way back to be able to function in society.

I'll be in my NYC apt till they peel me out.

I now have a blog on FTD which is surpassed 10,000 visitors since I started it in July and have people constantly contacting me from around the world. I was featured in Forbes in November and have been in numerous publications worldwide. There making a documentary about me for AFTD with 90+ hours having been filmed. HBO is now interested in seeing footage for a documentary. I belong to groups and forums around the world and work relentlessly to educate and further public awareness of FTD. I receive and respond to over a hundred comments and letters every week.

Three weeks ago I started the first FTD Patient Support Group. There's now 34 from 7 countries. I just launched a 3x a week live chat. The members pre-empted me by starting it last week and it's on and off now 24 hours a day.

There isn't a moment of every day that I don't fight to manage the symptoms of FTD. Yet I've managed to find happiness and purpose. My doctors and my support group Riverstone Memory Club are always there for me. I have the best support systems and friends in the world. My friends are there through thick and thin. Putting up with my FTDness and not giving me an inch of slack. They constantly keep me on my toes and make sure functioning. I work hard to keep it that way and in the world of FTD you are constantly doing everything humanly possible to alienate yourself.

One of my doctors and friends, Laurie Mullen, a chiropractor, has worked on me with Sacro Occipital Technique (SOT). Laurie uses her hands to evaluate, release and balance muscle and skeletal restrictions which affect the sacral-cranial system. She gently feels various locations of the body to find restrictions of motion or misalignment. Laurie then uses gentle chiropractic adjusting, stretching, and pressure to release restrictions in any joints, tissues or cranial bones influencing the sacral-cranial system.

This balances the structures surrounding the brain and boosts the body's ability to self correct. I think this is an invaluable tool for those with neurological impairments.

This alternative medicine works. Laurie has been working on me weekly since I've been diagnosed with FTD and there is no question that I leave her office feeling clearer with the ability to think better. There is no question that Laurie's work and friendship have been a clear contributor to me functioning so well with FTD. This is the only physical treatment that has helped me with FTD that I know consistently works .

_______________________________________

Birth is a terminal illness. FTD is an obstacle on the road of life. FTD is hell for everyone. My teenage kids only know dad being sick all there lives. They also know that dad gets out of bed tirelessly every day and kicks ass.

Yes, I did try suicide and now the spirit of life has taken over. I don't take a moment of any day for granted. I will never recommend suicide or euthanasia to anyone. I would never be that selfish again towards my children and loved ones.

I'm facing a very uncertain future but I will not live my life in fear. I'm slowly losing my mind and my grasp on life is slipping away. FTD is untreatable, unstoppable and incurable. I will fight and claw till my very last breathe is gone.

That's my response to those considering euthanasia or suicide for any reason.

I’m now on the way to be admitted to Columbia Presbyterian Hospital for heart problems. My cardiologist is Jacques Merab. I have faith in him.

Hopefully I’ll be back at Starbucks writing and making the most of life soon.

Snapping back to today February 1, 2012. I am back at Starbucks. My surgery and 3 stents were placed successfully. I am happy and with purpose. My mindset and positive attitude are set and I will continue this wonderful life I'm living.

Thanks everyone out there that have been helping me through this amazing journey. I truly love you all.

Howard

FTD, Cancer and now a Heart Attack

2012-01-26T11:58:00.001-05:00

I spent 6+ years in medical hell being misdiagnosed as bipolar before being correctly diagnosed and treated for FTD.

Thank God life has gotten easier.

This week started out with a milestone on Monday with my blog crossing 10,000 guests.

On Tuesday I went to Columbia Presbyterian Hospital, was informed I’d had a heart attack, spent two hours in surgery having three stents installed.

Now it's Thursday morning and I'm back at my Starbucks office laughing with my buddies.

A friend just arrived at Starbucks, Maxine, who just read the above paragraph, gave me a hug and said out loud “God doesn’t like you”. I started hysterically laughing as well as all the people around me who heard what happened and pronounced, “No, God loves me and I’m still kicking ass and typing away at Starbucks”.

Just another week in the life of an FTD'er.

In the year since I’ve been diagnosed with FTD and found out my brain is liquifying, I’ve have cancer resulting in my prostate being removed and now heart disease resulting in a heart attack with 3 stents being placed.

Guess I’m supposed to be home with a mopey face in bed with a TV remote in hand having visitors saying how lucky I am to be alive and me nodding somberly in agreement. Yeah right, like that’s ever going to happen.

Brain, heart and penis. Three major organs all gone haywire. Now lets look at the end result.

Brain - FTD - In the 1+ year since being diagnosed, I have had many acts from selfless medical professionals and friends to help me back on my feet. Two neurologists, Dr. Kyra Blatt and Dr. Karen Bell of Columbia gave me both excellent advise and treatment. As anyone in FTD world knows, I bust my ass 24 hours a day trying to manage the symptoms of FTD and continue living a life that is slowly slipping from my grasp. It’s working and I’m living and loving life.

Cancer - 4 months after being informed of I had FTD, I learned I had prostate cancer. On April 1st (April fools day) I had my prostate removed. My Doctor, Dr. Ketan Bedani, the director of robotic surgery at Columbia, did the surgery. I’m a man, which entitles and classifies me as an idiot. Who cares about cancer, will my penis work? Four months after surgery I was back in the saddle :-)

Heart - Chest pains started in December. It took me a while to find an excellent cardiologist. I found Dr Merabb at Columbia. Dr. Merabb got me the treatment I needed and helped save my life.

Being alone with FTD, I once again couldn’t follow as circumstances were changing and didn’t realize the severity of the situation. I showed up at Columbia Presbyterian Hospital alone Tuesday at 6:30am to be treated. All the other patients were with someone. When asked who was with me, I told them I was alone. When prompted how I was getting home, I told them I’d take the bus. As usual this FTD’er was looked at cross-eyed, but so what. I didn’t think to tell anyone because it wasn’t a big deal.

20 minutes into the cardiac cauterization, the surgeon Dr. Weiss told me I had had a heart attack, had close to 100% blockage and need 3 stents. I was up through most of the procedure incessantly talking and non-stop chatting in both English and Hebrew to Dr. Weiss who was Israeli. Looking back, I’m surprised they didn’t gag me or knock me out. I was probably driving everyone crazy as usual.

Once the surgery was over, I thanked Dr. Weiss and his staff for saving my life. I was laughing and beaming in the recovery room. Brain disease, cancer and heart disease and I kicked all their asses.

My friends showed up at the hospital and continuously called, texted. and emailed in shock wanting to know why I didn’t tell anyone. I told them I didn’t realize how severe things were getting. My ex-partner Tamara contacted me and told me she putting extra money in my account so I would have healthy and decent food to eat. Tamara and I split up over a year ago and she is still the angel in my corner.

I might be screwing up moment by moment and day by day with FTD, but I’m smart enough to keep myself surrounded by the best and the brightest.

I do due diligence and always manage the best medical staff to treat the litany of challenges the Universe keeps hurling at my body.

Most of my doctors are affiliated with New York Presbyterian/Columbia University Medical center. I cannot say enough about the doctors and staff at that hospital. They come through time and time again.

Well, I’m sorry, NYC. This FTD’er is alive and kicking and not going anywhere. I’m on a mission to educate, further public awareness and help those with FTD. I’m literally going have to be peeled away from planet earth to be stopped.

Howard Glick

FTD - Hygiene and Loss

2012-01-17T09:07:00.003-05:00

Sometimes it’s so difficult writing knowing I might be alienating the few people around me that can tolerate and love me. I think as I write how the people in my life dwindle, but the truth of FTD must come out no matter what the cost. A couple of months ago I wrote about a professor I used to speak to daily at Starbucks. He is close with someone whose wife has FTD. I used to openly talk about FTD and my symptoms. He talked about how her symptoms were similar to mine and how she cascaded into a rapid decline. He had no idea how much that effected me. This was a man who I liked and respected. I wrote about the incident without using his name or describing him. I haven't seen him in months and feel terrible about it.

It’s a terrible feeling slowly losing your mind and actually knowing your life is slowly slipping away. I don’t feel it slipping away moment by moment or day by day. I still am grasping for a life that no longer exists. It's hard to keep putting up with continual loss. I try to be productive each day, but things keep falling through the cracks.

One of the cruel things of FTD is it is deceptive to the one that has it and those loved ones around you. One of the symptoms of FTD is failing hygiene. Me, I’ve always taken at least 2 showers a day since I was in the Israeli Army 25+ years ago. My hygiene has always been impeccable. I've never worried about it, that is till now.

A close friend of mine told me she noticed I haven’t changed my jeans in weeks. I immediately answered that I have a few pairs of the same Levis which is true, but I was covering up. There it was, I was busted. Yes, I do my wash every Saturday but I’ve been wearing the same jeans for a while now. Washing them on Saturday’s but I’ve noticed that I’ve been washing just one pair of jeans for a while now. I just never thought twice about it, till now.

I normally bush and floss my teeth twice a day. I’ve done that forever. Now I’ve come to the realization that I’ve been flossing and brushing once a day, sometimes two but mostly one.

Well it’s another battle to fight. Of course I’ll get right on top of this. I’m glad I know what’s going on so I can institute change. It’s not always going to be this way. Sooner or later I won’t realize or care what’s going on.

I don’t know if anyone realizes how difficult it is to fight an unseen, unknown enemy that happens to be taking over your mind. FTD is slowly driving you crazy and killing you while destroying your whole life and turning your friends and relatives lives into a living hell. I’m in a constant losing battle. FTD is an unstoppable, untreatable, incurable disease. There are drugs that will numb me to being touch with myself and probably make my behavior and my life easier, but I choose to fight like hell every day and to cling onto a life that is going away,

Sooner or later very little will matter to me, but be more difficult for the people around me.

Right now the important thing is to put on a fresh pair of pants every day and brush & floss twice a day. It’s has to be regimented or I’ll fall of the mark again.

Such is the day to day battle with FTD. Next............

Documentary and Life Update

2012-01-13T09:17:00.002-05:00

Hi Everyone,

I just want to say I'm thrilled with how the Facebook FTD Patient Support Group is working out. It now has 30 members and is always active. I'm starting a live chat schedule next week, but the members beat me to it and have already started using the chat feature.

If there is someone new needing instructions to join the invitation only group please scroll down couple of articles to the one called, "FTD Patient Support Group" or email me at howardjglick@me.com

The filming is going well with an estimated 60-70 hours shot. The filmmaker, Joe Becker of Thinkfilm Inc. has experience shooting people with FTD. Joe made the successful FTD short film, "It is What it is". That film shows four families and discusses what FTD does to families. It is gut wrenching. Joe is a seasoned filmmaker whose credits include the TV hit show "West Wing".

Joe Becker sees my whole world.

The film being made about me has a yet to be revealed name and will be a full length documentary. There is now interest from a major studio who contacted Joe about wanting to see footage and have a meeting to discuss a full length film. So far people that have seen parts have said the film takes you from laughing out loud to tears running down your face. I've been told because I have no inhibitions (FTD) I'm great to film. I'll say anything at anytime to anyone. If I didn't live in New York I'd be in jail, institution or drugged up like most other FTD'ers. I'm totally honest and have zero tolerance for BS. I'll say what's on my mind which either has people around me hysterically laughing or chasing me down the block wanting to kill me. I never ever get into physical attractions, but am constantly saying or doing inappropriate things and need to talk myself out of situations. I say hurtful things unintentionally and can reel for up to days after when I realize how much I hurt someone.

Joe sees me crying in the middle of the night worrying about being on the streets because I don't have enough money to sustain myself. He hears how I'm slowly get squeezed and choked by society. How my social worker promised me a rent freeze because of my terminal illness only two have my application denied, then the appeal rejected and finally a lawyer from NYC telling me I'd be getting more help if I was a substance abuser or alcoholic. Joe has been with me through my frustration of how my food stamps went from $2.03 a day to $1.45.

Finally a couple of weeks ago on my birthday December 24th I received a letter from NYC stating my food stamps are now reduced to $0.63 a day. I can appeal it by a sending in paperwork and then go to a hearing in Brooklyn.

Joe also follows my triumphs how my blog has received international attention, how I've helped others with dementia in my community and am receiving media attention for projects I've created. Of course the film covers the horror history of me being misdiagnosed for 6+ years. FTD taking from me just about everything life has to offer.

I'm not sure if the film will be a triumphant story of me facing life with FTD and overcoming obstacles or end in tragedy.

I just heard from my lawyer that my private Long Term Disability insurance company has refused to reinstate my disability. Dementia and FTD is covered.

This is a huge blow to me.The stress on me now is unimaginable. I will write about this after I meet with my lawyer next week.

Howard

Violence and FTD

2012-01-09T13:06:00.001-05:00

STARBUCKS MAIL

Arrived at Starbucks last week morning and was informed by the manager that I had received mail and it was highly unusual for customers to receive mail at the stores. It was addressed to Howard Glick (customer) at the Starbucks I go to on 181st and Ft. Washington Avenue. I told the manager I would open it up outside in case it blew up. I went outside to film the opening and not to endanger the cast of characters and crew of Starbucks. I'm still here and sure enough it was a letter from someone in Texas that I've never heard of.

The letter stated that my blog was helping him. He has FTD and PPA. He enclosed $50 cash and suggested I set up Paypal so people could send me money. He wrote a very nice and touching letter. I cried on film. I'm such a woos. You guys know me and I don't like charity, but it was an extremely kind gesture. I've been receiving Starbucks gift cards and gift cards regularly. I've thanked everyone. I'm deeply touched by everyone who has reached out to me saying I'm inspiring them or helping them understand and deal with loved ones.

The gentleman who just sent me $50, sent it in cash and it was appreciated. I added it to my Starbucks card. I've received many requests for an address to send things to and some suggest I set up a foundation, but I've no idea what I'm doing so that's out. I'm going to give out my home address because I'm scared gifts will go to the wrong place.

Howard Glick

620 Fort Washington Ave. Apt. 6F

New York, NY 10040

VIOLENCE AND FTD

There are many misconceptions about violence and FTD. I've never had a disposition towards violence, but have been terrified at the possibility of becoming violent.

While incorrectly diagnosed as bipolar, for 6+ years I was on 21 different medications and up to 17 pills a day. I routinely broke cellphones in half and through them out the window of cars. I would throw things and break things. Cursing and yelling were part of the repertoire as well. This was done mostly out of frustration. Why was I frustrated? I was sick, my personality was changing. I was in a medically induced fog and didn't know what was going on. The doctors did the best they could treating me with pharmaceuticals and turning me into a zombie.

When diagnosed with FTD I was taken off all the meds and besides being straight for the first time in 6 years, I now had the challenge of learning the new FTD turbo-boosted personality of Howard Glick. Howard Glick FTD was enhanced with a loud personality, incessant talking or non-stop chatter and would always just talk about me and never let another person get a word in. Constant inappropriate statements and sexual comments/jokes were the norm. People around me were either hysterically laughing or chasing me down the block wishing to do me bodily harm. My friends nicknamed me BS man because I was now 99% straight talk and won't take any BS from anyone. I constantly find myself in confrontations but have the innate ability not only to talk myself out of any situation, but become friendly with the other combatant.

I used to be petrified about becoming violent especially after reading story after story in all the forums and groups I belong to.

I quickly learned that there's not one FDA approved medication for FTD. Doctors just tried managing symptoms and behavioral issues by experimenting with all types of combinations of medications hoping something would work. Strong antipsychotic, antidepressant, anti anxiety medications are used in conjunction with behavior management are the medically accepted norm, but not the Howard Glick FTD route. This trial and error sometimes works, but often causes chaos for both FTD patients and caregivers before finding a temporary bandaid. Since FTD is a progressive disease and continual brain changes are a given, constant change of medication and behavioral control tactics need to be applied.

The trick was now to learn how to mange the symptoms before I wound up in jail or institutionalized. There was no way I was going back to being a lab rat trying pharmaceutical cocktails that no one knew would work.

I decided to take on my behavioral issues with proper rest, meditation, diet and constant monitoring of myself by me and by my friends. People at Starbucks and my lifelong friends are quick to point out when I'm getting tired or getting out of control.

Every single day there are behavioral issues, fortunately I am in New York City where my behavior is not just tolerated, but normal. If I was in Iowa of Vermont I'd be incarcerated or institutionalized real fast.

Violence and FTD constantly comes up on numerous forums/groups etc. and I have never read a clear cut factual answer. I took this question to the Helpline at AFTD who has the best resources and most experienced medical staff in the world and here is the answer I received.

Howard,

Below is as thorough an answer to your question as I have been able to come up with, thanks to help from Sharon and the guidance of members of our medical advisory committee.

Please feel free to pass it along to the person who originally posed the question.

I hope you are well and happy new year.

There is no research published on predicting the likelihood of violence in people with FTD. According to the doctors we contacted, verbal and physical aggression can occur in any neurodegenerative disease, but there is also no reliable way to guess the probability of what someone’s future symptoms or behaviors will be.

There are things a patient and/or family can do to address the issue if someone starts to have trouble with increased agitation or behavioral outbursts. Because FTD makes it harder for a person to control his/her own behavior, other help may be needed to reduce the chance of things getting bad unexpectedly.

If the person has family or friends around, behavior techniques (caregivers changing their behavior) can help to redirect attention and diffuse rather than add to the problem. There are also medications that can be used by a knowledgeable doctor to reduce the symptoms. Often behavior techniques and medications are used together.

If agitation or outbursts are a problem, the person should address it with the doctor and family/friends so they can stay as active and involved with others as possible.

Matthew F. Sharp, M.S.S

Program Coordinator

The Association for Frontotemporal Degeneration

msharp@theaftd.org

267-514-7222
866-507-7221

____________________________

Life with FTD goes on with each new day being the ultimate adventure. I don't take a moment for granted making the most of every day with FTD. I look forward to living life and not obsessing about illness or death.

Birth is a terminal illness, FTD is simply another obstacle in life to be overcome.

Howard Glick

Update: FTD Patient Support Group

2011-12-22T13:08:00.003-05:00

I want to tell everyone that the FTD Patient Support Group is off to an excellent start.

Some of the members have come from the FTD Support Forum and know each other. I want to thank the Moderator of the FTD Support Forum for realizing the need and the value of having a patient only group and help me identify FTD patients.

Since starting the Patient only support group a few days ago we've had 22 members join. There is now a place for FTD Patients to go to with an upbeat, positive and comfortable atmosphere. We talk not only about the difficult topics and our lives, but also strive towards improving our lives and once again find happiness and purpose.

The group operates through Facebook. The group is closed and confidential. It is by invitation only and no one from the outside can see who the members are or what is discussed. There is also a live private chat service that members can use. There are patients represented from 3 countries so far. I guess that's why we get posting close to 24 hours a day.

Sharon Denny, the program director of AFTD is a guest and helps the group by opening up the resources of AFTD to answer questions that come up. I've started using the AFTD Helpline to get answers to questions. To keep the anonymity I go to the helpline for the group to get answers for the questions unless the members want to go themselves.

For those of you that have programs at Universities/hospitals or run FTD Caregiver Support Groups, please make sure the caregivers and loved ones of FTD Patients know about this group.

I can be contacted through my email:

howardjglick@gmail.com

If you would like an outside opinion of the group please contact Sharon Denny of AFTD.

Thank you AFTD for announcing the group on your homepage of your Website.

As the group grows and needs change I will adjust by adding people with FTD expertise to help moderate.

The FTD Patient Support Group will be making FTD patients and caregivers lives easier.

FTD Patient Support Group

I'm announcing the creation of the first FTD patient only support group. It will have a unique and unusual name. It will be called the "FTD Patient Support Group".

The FTD Patient Support Group will be a private group that's open to those with FTD and other similar neurological disorders.

This will be a comfortable community for those with FTD.

AFTD

"This support group will be independently run by Howard Glick. The Association for Frontotemporal Degeneration (AFTD) has offered to provide information, education and resources at the request of group participants to help them understand and cope with FTD in their lives."

Association for Frontotemporal Degeneration Link - AFTD

FTD is a progressive disease. We need to keep adapting and changing because of the changes being made to our brains. In the group we will be able to share our experiences to help one another go through these changes.

This a place those with FTD can go and be with others that can relate to your life. You don't need to be alone with FTD any longer.

The group is meant to give those with FTD a sense of belonging. People with FTD will not only be able to be part of something special, but will be with people they will be comfortable with in a pleasant atmosphere.

We can share our experiences, good and bad with the goal of making a better life for ourselves. We can also the learn the difficult task of learning how to educate those around us about FTD. It's important for those around us understand who we are and what we're going through.

By sharing our experiences with each other all be able to reduce the amount pain we're going through in day to day life.

The FTD Patient Support group will be a group to go to laugh and to cry. To share our former lives and current life.

We will try to help each other keep a positive attitude and work around all obstacles.

We'll figure out the best way to deal with the symptoms of FTD through our experiences and make our lives a bit easier to live.

We all have behavior/language/symptoms with cause issues. We'll learn to get over things fast. None of us is perfect. If we do something that bothers us, we need to get over it and move on. We'll try to reduce the dwelling and ruminating over things we can't control.

Start thinking of positive things we can do to enhance our lives.

We need to be aware and accept the changes in our lives. The life we were living is over. Accept it and make a better life for yourself today. We'll help each other do this.

We all have experience with meds and doctors. Some things work for some and not others. We can share our experiences.

How to Join

Send me a message with a request telling me you have FTD or a neurological illness and would like to join the FTD Patient Support Group. I will then add you to the group.

The names of the people in the group are confidential and will not be shared with anyone. No one will be able to see or access any of the names or information on any of the members of the group from the outside. You can use an alias if there is any concern. No personal information will ever be disseminated by me.

If FTD patients need the help of caregivers to participate, they are welcome.

Vulgar language and adult situations will be tolerated. This is real to our world and as long as it is being used to vent, or used in a constructive manner that's fine.

We already have people from 3 different countries that have joined.

I will be the moderator and be monitoring the group 7 days a week.

If you need help joining Facebook or have any other questions or concerns you can contact me directly via my email: howardjglick@me.com

Please help spread the word of this group get help those in need of help.

The FTD Patient Support Group will be be officially starting Wednesday December 14, 2011

New FTD Patient Support Group

2011-12-12T11:11:00.011-05:00

FTD Patient Support Group

I'm announcing the creation of the first FTD patient only support group. It will have a unique and unusual name. It will be called the "FTD Patient Support Group".
The FTD Patient Support Group will be a private group that's open to those with FTD and other similar neurological disorders.

This will be a comfortable community for those with FTD.

AFTD
"This support group will be independently run by Howard Glick. The Association for Frontotemporal Degeneration (AFTD) has offered to provide information, education and resources at the request of group participants to help them understand and cope with FTD in their lives."

Association for Frontotemporal Degeneration Link - AFTD

Having FTD is not the end of life, it is just the beginning of a different type of life. We can never return to the life we once had, but we make the best of the life we have now. Everyone has the right to to happiness and purpose in life. Just because we have FTD does not give us the excuse or the right to roll over and die.

FTD is a progressive disease. We need to keep adapting and changing because of the changes being made to our brains. In the group we will be able to share our experiences to help one another go through these changes.

This a place those with FTD can go and be with others that can relate to your life. You don't need to be alone with FTD any longer.

The group is meant to give those with FTD a sense of belonging. People with FTD will not only be able to be part of something special, but will be with people they will be comfortable with in a pleasant atmosphere.

We can share our experiences, good and bad with the goal of making a better life for ourselves. We can also the learn the difficult task of learning how to educate those around us about FTD. It's important for those around us understand who we are and what we're going through.

By sharing our experiences with each other all be able to reduce the amount pain we're going through in day to day life.

The FTD Patient Support group will be a group to go to laugh and to cry. To share our former lives and current life.

We will try to help each other keep a positive attitude and work around all obstacles.

We'll figure out the best way to deal with the symptoms of FTD through our experiences and make our lives a bit easier to live.

We all have behavior/language/symptoms with cause issues. We'll learn to get over things fast. None of us is perfect. If we do something that bothers us, we need to get over it and move on. We'll try to reduce the dwelling and ruminating over things we can't control.

Start thinking of positive things we can do to enhance our lives.

We need to be aware and accept the changes in our lives. The life we were living is over. Accept it and make a better life for yourself today. We'll help each other do this.

We all have experience with meds and doctors. Some things work for some and not others. We can share our experiences.

How to Join

You need to have a Facebook account. Once you have a Facebook account you need to friend me. Search on Facebook for Howard Glick. There are a few, but i'm the only one with a Starbucks sign behind me.

Send me a message with a request telling me you have FTD or a neurological illness and would like to join the FTD Patient Support Group. I will then add you to the group.

The names of the people in the group are confidential and will not be shared with anyone. No one will be able to see or access any of the names or information on any of the members of the group from the outside. You can use an alias if there is any concern. No personal information will ever be disseminated by me.

If FTD patients need the help of caregivers to participate, they are welcome.

Vulgar language and adult situations will be tolerated. This is real to our world and as long as it is being used to vent, or used in a constructive manner that's fine.

We already have people from 3 different countries that have joined.

I will be the moderator and be monitoring the group 7 days a week.

If you need help joining Facebook or have any other questions or concerns you can contact me directly via my email: howardjglick@me.com

Please help spread the word of this group get help those in need of help.

The FTD Patient Support Group will be be officially starting Wednesday December 14, 2011

AFTD article on Howard Glick

2011-12-07T09:18:00.002-05:00

Hi Everyone,

AFTD - The Association for Frontotemporal Degeneration has written a full page article about me in there quarterly newsletter. I am attaching a link to the Newsletter which is on the AFTD Website.

AFTD is best resource worldwide for the most accurate and up to date information on FTD. There website is extensive and always kept current with the latest news.

You can register with AFTD in 2 minutes on there home page and receive the free quarterly newsletter by email, post or both. A direct link to there website is on the lower right of this blog page.

Taking on FTD: Howard Glick
The article is on page 9
http://www.theaftd.org/wp-content/uploads/2009/02/fall-good.pdf

In the last few weeks I have received hundreds of wonderful comments through all the different social media's I engage in. Your comments keep me going and motivated.

I also want to personally again thank Alice Walton, whose article in Forbes has helped educate and further public awareness of FTD.

Forbes article

http://www.forbes.com/sites/alicegwalton/2011/11/17/brain-ventures-a-businessmans-battle-with-a-rare-neurological-disorder/
Thank you so much for your support,
Howard Glick

FTD - Distraught Over Being Unaware

2011-12-02T14:05:00.015-05:00

I want to thank Alice Walton for the accurate depiction of my life with FTD.

Forbes article

http://www.forbes.com/sites/alicegwalton/2011/11/17/brain-ventures-a-businessmans-battle-with-a-rare-neurological-disorder/

The article has received much attention and has helped educate and create further awareness of FTD -Frontotemporal Dementia.

Alice recently wrote an article Forbes featuring Steve Jobs shortly after his death. Three weeks later Howard Glick is featured in Forbes. I feel like I'm in good company.

Steve Jobs was worth over 6 billion dollars. Howard Glick has $104.79 in the bank. That's all I have to my name. I believe I might be one of the monetarily poorest businessman featured in Forbes.

I might be poor, but I have a life. It might not be the life anyone would've chosen, but it's mine and I'm making the best of it.

My story is very similar to many with FTD. I got wiped out financially having the wrong diagnosis for over 6 six years.

I had a high profile job in the technology sector I loved. I worked the same product since the 80's and consistently moved up the line. I was the first outside sales rep hired to sell the Riso product line in New York City. The technology was new and the manufacturer was an unheard of Japanese company.

99.9% of you are now saying to yourselves, "Who is Riso". (you can google to find out)

The local distributorship was an hour and half away by car. I was to work out of my apartment. My largest competitor was a little known company called Xerox.

Jobs vs Microsoft - Glick vs Xerox

Jobs out of his garage and Glick out of his apartment.

Anyone who knows me knows I love having fun. Where I do have an ego, right now I'm having pleasure juxtaposing these analogies between Steve Jobs an obvious genius and me, an accomplished businessman and known schmuck.

I engaged Xerox like David fighting Goliath. Year after year I pounded away at them in NYC taking over school district after school district, account after account. Whereas I was like a little pesky mosquito to be swatted and consistently missed, Xerox did frequently try and recruit me to join Team Xerox. Sorry, I was loyal to Riso.

My career track advanced from distributor to the manufacturer Riso out West and I was promoted till FTD infiltrated my life.

In the last nine years I've managed to lose almost everything a person can lose in life. I rarely see my children out of Seattle, I couldn't afford to go to my own son's Bar Mitzvah which was just at a Shabbat service - no party, I lost my career, the woman I loved and all my money. I've never been sick in my life, never been on unemployment, never needed public assistance of any kind, never been arrested and always paid my taxes.

I also had a long term disability plan in case I got sick. I lost that being incorrectly diagnosed as bipolar. I have a superb lawyer working with my neurologist trying to get it reinstated. Dementia is covered under my plan and a SPECT scan from 2006 suggested that degeneration had begun. A 2010 PET scan has now made it clear that it was FTD manifesting itself.

Like a boxer who is down and out on the canvas, beat up and nearly dead. I have risen for one last round. I will not be denied my last shot at life.

FTD is not a terminal illness. Birth is a terminal illness.

Until the day we are dead we have a right and a responsibility to life itself. It is up to us to make the most of every moment of every day. I will continue to help educate and further public awareness through my blog, the documentary that is now being filmed, social media, through interviews and periodicals. I will not hesitate or stagnate. Whatever it takes to get the word out, I will do. My goals are set. I am on a mission and I will not be denied.

A few days ago a close friend of mine Janet texted me at 2:45am saying she couldn't sleep and wondering if I was up. Janet has a boyfriend.
I was up doing my meditating, clearing my mind routine when I got the message.

I replied by saying we should be having sex and describing what we should be doing and how it would help her fall asleep. What I wrote wasn't x-rated, but well up into the R-rated category. I knew what I wrote but didn't see anything wrong with it. Janet immediately responded that I was way out of line and she was very upset. I wrote I was sorry but I really didn't believe that I did anything wrong.

I was totally unaware of how offensive and inappropriate I was.

It hit me a half hour later and I was devastated. I sent off email after email for the next day or so feeling terrible if not close to being crushed. Janet was shocked at the time, but understood and quickly got over it. She is one of the few people that understands FTD and can put up with me. At times I feel it might be easier not to follow anything with no self awareness or insight, like so many of my fellow FTD sufferers. Of course I fear my condition will deteriorate and at what point does Janet and the rest of my loved one's have enough of me.

I've lost so many I've loved to FTD.

I ran into a professor I know a day later and told him the story. A good friend of his wife has FTD and is in the final stages in a facility. He is an intelligent, good natured man and he has gained my utmost respect. Subsequently after hearing my story, he told me his friends wife was at my stage when FTD started progressing very fast and she soon was totally unaware all the time of what she said.

Of course he didn't realize the devastating effects his words had on me. I didn't say a word.

There have been an alarming number of incidents lately. For the first time a lifelong friend, Marc Turkel found in necessary hand out an FTD awareness card asking to please pardon my behavior/language because of a Neurological Disease. We were in the office supply store Staples. I've prided myself in carrying these cards but have never needed to use one of these "Get Out Of Trouble Free Cards". Marc was in from Seattle for 3 weeks to help me with the filming and spend time with me.

Welcome to the wonderful world of FTD.

Forbes Magazine: A Businessman's Battle with a Rare Neurological Disorder

2011-11-17T13:34:00.019-05:00

Forbes Magazine has written an article about my life with FTD.

Brain Ventures: A Businessman's Battle with a Rare Neurological Disorder
http://www.forbes.com/sites/alicegwalton/2011/11/17/brain-ventures-a-businessmans-battle-with-a-rare-neurological-disorder/

Forbes just added the article to their Health & Woman editions.

If you've read the Forbes article, please look at the other articles in my blog which describe living life alone in NYC with Frontotemporal Dementia. I articulate what it's like to overcome everyday obstacles with FTD.

Articles range from what it like to be misdiagnosed as bipolar for over 6 years to losing almost everything in life. I have also written on fighting and winning battles against depression, isolation, and the constant battle trying to survive with minimal social services.

To Whine or to Wine?

2011-11-07T11:39:00.000-05:00

I would love to whine, but I can't. The truth of the matter is I'm not a whiner. I'm an implementer of change.

I am lucky to have the best friends in the world who no matter what happens, will not give my an inch of slack or let me feel sorry for a myself. We love each other and we treat each other the same way since we were 5.

I take everything one step at a time. My reality is still this:

My SSD is $1,996.00 per month.

My rent is $1,636.00 per month (Gas & Electric not included)

That leaves my with an income of $360 per month to live in Manhattan.

My social worker assured me she could get me a rent freeze and a food stamp increase. FTD is recognized as a rare terminal disease.

My DRI rent freeze application was denied.

My appeal to the denial to the NY Housing & Finance was also denied.

A subsequent phone call from a Lawyer with NYC Housing & Finance explained to me I make to much money. She also agreed with me I would get more help from NYC if I was a substance abuser or alcoholic.

Now I just got my new lease and my rent is going up to $1,700.00. That means my income will be $300 per month. There is no cheaper rent anywhere near me. I live in Manhattan and this is the way it is.

Lets not fret over little things, after all there is the food stamp increase application.

I made $2.03 a day in food stamps or $58.00 per month.

The increase not only was rejected, they lowered my food stamps from $2.03 a day to $1.45 a day. My monthly allowance decreased from $58 to $45. At least I know that because of my sacrifice we will not have to burden the top 1% of wage earners with a tax increase.

I'm barely making it and a rent freeze and food stamp increase would have meant I could have had a small measure of stability into the future the I wouldn't be on the streets.

Never mind never seeing my teenage children who live in Seattle. I miss them.

I'm bankrupt and cannot move. There is no place cheaper in the area. I have my support systems and medical help here (Columbia Univ. Med. ctr & Columbia Presb. hospital). My friends are in the area. My neighbors and building staff help me and are familiar with my condition. My support group at Riverstone "Memory Club" is here as well .

Right now I want for nothing because of the kindness of friends. I also have a couple of things going that hopefully will bear fruit. If they don't work out than I will find another way to survive. I am living on the edge and I hate living on the edge.

I have FTD and my life is in total chaos and disarray because of it. 99.9% of the world thinks FTD has to do with flowers.

Guess what, I'll find a way out. I really don't care what obstacles the Universe throws at me at this point. I am going to find away out of this hole.

I ain't heard no fat lady singing yet!

I intend to keep going till there's nothing of me left. No matter how rough each day gets I will meditate and clear my my at night. I will figure out new ways to articulate what it is like to think like an FTD'er and to keep pushing towards greater public awareness of FTD.

I will continue to go to Starbucks 7 days a week and continue the work I'm doing. At this point my intentions are to start working towards speaking engagements and motivational speaking. This is with or without my other projects that are looking promising at this point.

I believe we are all masters of our own fate. No matter how difficult things become I will never return to the medically induced fog I was in for
over 6 years. It may not be fair to me or others around me, but that's the way it is. This is my decision to make and I've made it. Forget the easy road.

Besides dealing with the minor complication of FTD in my life I am involved in many online group/forums/etc. I've noticed in multiple forums people get caught up with a situation and go on harping on a topic or point. Let me pull a Seinfeld and say,"Not that there's anything wrong against joining the band and being supportive."

One example is a recent person who was justifiably upset and wrote about it. At the end the person wrote there sorry about whining. From that point there many wonderful supportive people went on to discuss whining. Page after page after page went on discussing whether whining was okay, whether the individual was whining and that this was the place to whine if they were whining. I'm sure someone will whine about me writing about whining.

I wrote the following response and I'm publishing it because I'm involved in many groups on and off line. I feel we all need to sit back, breathe and be human. In no way am I mentioning anything that can allude directly to any group or individual.

The following was my response to multiple pages of responses to whining:

To wine or not to whine, or to whine and not to wine. that is the question? I will at anytime share a bottle of wine and whine or not whine with anyone who prefers wining over whining or whining without wining.

After reading page after page of whine or not to whine, I'm sitting here at Starbucks laughing and not whining.

FTD is a strange, elusive, devastating, and absurd type of Dementia. Then again there are people out there that will argue it's not a form of Dementia.

Hey, caregivers and fellow FTD'ers. Kick back and relax with or without a bottle of wine and enjoy life for a moment. We are all doing the best we can and deserve some laughing, crying, whining and wining. Groups can be a great release, but let us all remember we need times of levity even in groups where things get vey intense.

Sit back with your loved ones and pull out the old picture album or bring up some old fun stories. We are living and moving on. Find a way to find some happiness in your life with or without wining or whining.

Howard Glick - FTD'er who is living life with happiness and purpose

FTD - I'm in the War

2011-11-03T18:03:00.001-04:00

I'm consistently dealing better managing the revolving door of symptoms of life with FTD.

Right now I'm taking FTD head on with no caregiver and no drugs (except Namenda) and I'm kicking ass. I am clear, lucid and can articulate well.

The symptoms are there and not going anywhere, I'm just dealing with them differently. For months I wrote about how I would come home from Starbucks at 9:30 -10am exhausted and quiet often be in bed till the next morning. I was exhausted from monitoring my behavior trying to keep my language, sexual jokes and innuendoes etc. at a minimum.

Sometimes the home health aide would be shocked that I was so exhausted I couldn't answer any question besides what my name is. I would just stand there confused and disoriented and she would tell me to go lay down.

My neurologist and friends told me not to worry about my language, behavior etc. I was told to stop my monitoring and over thinking because I was burning myself out. In my desire to return to the human race I discounted there advice. A few weeks ago my Starbucks buddies and staff noticed I was staying later and later or returning in the afternoons. Friends also noticed that my behavioral/language difficulties were greatly reduced.

Now it seems I'm getting close to having most of my all energy back. I still don't sleep more than 3-4 hours a night.

I just put it together a few days ago. All the monitoring of my actions and language that was burning me out was finally paying off dividends. I integrated into my life and have successfully minimized these symptoms and now I'm not needing the constant monitoring of myself. Of course I slip, but big deal.

Of course the hours of monitoring, meditation, resting, and mind strengthening exercises are helping.

Some reports say FTD behaviors have a physical cause and cannot be controlled or minimized by the individual.

The more I find out about FTD the more I realize how much is not known. The Frontal and Temporal lobes cover half the brain.

I frequently get contact by people whose loved one display new musical talents as there language skills decline. One woman is now mute, but started singing beautifully. Another plays organ. The list goes on. No one understands this. FTD is still an enigma.

"It is what it is" and I'm doing better. Maybe it's just a stage of FTD, but I'm doing better and I will continue to fight to improve every day.

Does this mean I'm ready to join society being a fully functioning person, I think not. There are so many other symptoms and issues I'm dealing with it is mind boggling. Some of the most difficult and prevalent are:

1. Not being able to put facts together and make a rational decision. This also causes my judgement to be flawed.

2. Not being able to follow conversations and phasing out in the middle of conversations.

3. Not realizing when circumstances are changing around me.

4. Not knowing exactly what a person is meaning or intending to say while there talking to me.

5. Saying things I regret later.

6. Constantly second-guessing myself.

7. Being aware that I'm unaware of what I'm saying and the hurt that's being done.

8. Short term memory loss.

9. Not being able to retain what I read and other cognitive issues.

I intended to write just a couple of symptoms but the list quickly grew. I stopped at 9.

My pet project right now is minimize my non-stop chatting or incessant talking. I get into these modes where I continually ramble on without stopping. It's usually about myself and I don't let anyone talk or pay attention to anyone else. There are a many issues involved in this and it is complicated. I will get back to you on my progress. I was going to say progress or lack of progress, but to me the efforts involved in managing the symptoms of FTD are a triumph in itself.

Everyone knows how my heart goes out to caregivers, friends and loved ones of people afflicted with FTD. You go through absolute hell.

Those suffering with FTD are in a war 24 hours a day. Whether there isolated in a bedroom at home watching TV (I did that for 6 years), in a nursing home not really knowing what's happening or going on, or battling every day out in society like I'm doing, we are in a war.

I'm going to use the analogy of watching the Vietnam war on TV. We still see the old clips and say how horrible that was. Nobody though has any idea of what that soldier on the ground was going through. That's what it's like living with FTD. You can't explain it or understand it unless your going through it.

Living life with FTD is fighting a horrible war that never ends and everyone else is watching it on TV.

Living with FTD is nothing short of war.

Howard Glick

FTD'er who is living life with happiness and purpose

The Value of Support Groups for Caregivers and Patients

2011-10-26T11:49:00.006-04:00

Last year after I was diagnosed with FTD the Alzheimer's Association awarded me a grant so I could attend a Dementia Support Group called, "The Memory Club". The group is made up of individuals who have been diagnosed with various early onset Dementia's. I am the only person in the group with FTD - Frontotemporal Dementia.

A question was asked of me by Sharon Denny the program director of AFTD - The Association for Frontotemporal Degeneration . What is the most valuable thing I learned from Riverstone's "Memory Club".

I took the question to the talented members of Riverstone's "Memory Club" and the upcoming list is what we thought of.

(I am truly the luckiest person in the world. As I sit here typing in Starbucks, one of the lovely barista's just came by to take my cup to give me a free refill).

Many of the answers listed below can be used in context for both support groups of both caregivers and FTD/Dementia patients.

For me, the most valuable thing I learned is number O:

0. Find happiness and purpose in life again.

a. Everyone has a right to happiness and purpose in life.

1. Make subtle changes and adjustments in your routine to adjust to life with Dementia.
a. You need to learn to keep adapting to the changes made by dementia.

2. Learning to live with Dementia in a positive way.
a. You need to keep a positive attitude and work around all obstacles.

3. A sense of belonging.
a. You are a part of something and feel comfortable with the people and atmosphere.

4. Expressing our experiences to peers in an effort to minimize our problems.
a. Having others that can relate to your life and you to theres.

5. You learn you are not alone.
a. You might be lonely, but your not alone.

6. Learn you can function with your crazy ways.
a. No one is perfect. Live life and enjoy. Get over things fast and move on.

7. Life is not over, we can rebuild our lives.
a. You can have a full and wonderful life. Just different than before.

8. Awareness of Dementia.
a. Be aware and accept the a changes in your life. You can't be happy if you keep fighting for the life you had before Dementia. You need to be aware of yourself and your life to move forward.

9. Get a 2nd opinion, don't necessarily trust every doctor you see because they are a doctor.
Listen to medical opinion, but don't disregard your instincts and don't think twice of seeing someone else when it comes to matters of health and wellness.

10. A friendly, supportive, understanding environment.
a. You can breathe and relax. Better and cheaper than a psychiatrist office.

11. We are like brother/sister.
a. You can develop new close relationships with others that understand you and you them.

12. Learn how to live, not how to die.
a. Get busy living, never give up.

13. Dementia is a not a mental illness. Medications for mental illnesses do not necessarily work with Dementia.
a. Be extremely careful of all medications and there side effects.
b. There are no FDA approved drugs for FTD. The UCSF website has a guide to medicines for FTD.
c. Do not take Aricept for FTD.

Being diagnosed with Dementia is a shock to the system. It's not easy being told to get ready for the end of your life.

You have a progressive terminal illness with no cure.

You're told to make end of life plans. The only thing you can think of when leaving the doctors office is life is that I have Dementia and I'm going to die. You are in shock and many people do not get over it.

Caregivers and loved ones lives change drastically as well. They also have to go through the shock of there loved ones having a terminal illness.

Support groups will help ease the pain and help both caregiver and Dementia sufferer make necessary changes in lifestyle to create a new life.

To find a FTD support group for caregivers in your area. Check the AFTD Website for the regional coordinators.

The Association for Frontotemporal Dementia http://www.theaftd.org/

For caregivers of other types of Dementia's and if there is no FTD support group in your are, contact your local Alzheimer's Association.

Those diagnosed with FTD should try one of the Dementia Support Groups. They can find out where these are from the Alzheimer's Association. It was nothing short of a life changer in my case.

Remember, you get out of it what you put into it.

It will not be the life you once knew, but it can be a life with happiness and purpose.

Dementia is not the end of life, it is just the beginning of a different type of life.

I am looking to start a FTD patient support group in Manhattan. The purpose will be to help us find happiness, purpose and to deal better with having FTD. Please contact me if you are interested.

Howard

FTD - The Insidious Disease that Lurks in the Shadows

2011-10-21T11:24:00.006-04:00

FTD sufferers often are not aware they even have FTD. I work very hard to operate on the current level at which I am currently facing life with FTD. I spend a lot of time meditating and thinking deeply about my situation and it's commonalities to others with FTD. I continually strive to evaluate the thinking that leads me to into situations of thinking and behaving irrationally or inappropriately. The culprit hiding behind the curtain is not the wizard, but FTD which reeks havoc on the thought process.

FTD lurks in the background and is so insidious, it usually doesn't even allow those inflicted to retain the self awareness to realize we are sick.

I am always involved in situations that are giving me insight to my life with FTD and helping others to cope. I sometimes use parts of my string of conversations in my blog because these are real life situations that people can relate to as well as further public awareness.

I always ask for permission and always use fictitious names and never give any information that can possibly identify the people I am communicating with. These are parts of conversations I have had in the last couple of days.

Hello Howard,
I have a few questions for you, if you can help me.
My husband is in facility with FTD, diagnosed in 2009.
He was previously also diagnosed as Bipolar
Because of violence the doctors suggested I take no chances, for either of us, and place him in a safe place. He was admitted to a facility in 2009. He is happy and calm there.

Here's a question:
I visit on Mon- We and Fri (he is 40 miles away).
Today I said to him, when do I come back to see you,,,he looked away...I asked again....he looked away..
I said , look at me...I asked again, and he said Fri...it seems he knows, but has difficulty processing the answer,,,is this sort of it???

He does not really accept my assistance or instruction, like today he would not take his jacket off when we came in from outside, I got him to unzip it, but then he zipped it back up...a nurse came in , said take that jacket off Mr Johnson...off it came...

He is affectionate with me, and does initiate some conversation...
Can you suggest anything more I can do to help him in ANY way???
I get him to help cut out things to decorate his room, we read together,,I get him to write short notes to friends and family...etc.
Thanks, and God Bless,

Hi Joan,

It's heartbreaking to read about what has happened to both of your lives. FTD is ruthless.

You are an amazing woman doing an amazing job sticking by Paul. It's normal to feel guilty, but you made the 100% accurate decision for both of you and Jim's health, safety and happiness. Life is not easy. Joan, you are doing the best you can and did make the right decision in following the doctors advice and committing him to a facility. Not only is he happy and calm there, but he is safe and you are safe. I was also hospitalized and I knew I needed to be.

Please note that AFTD has a kit for long term facilities so they can be educated on how to care for FTD patients.

Every case of FTD is different, but many things your husband is going through are very familiar to me. First of all let me tell you your husband loves you unequivocally. Right now he is not sure how to express himself and tell you. He knows he wants you there and loves you, but he isn't sure what is going on to him or around him. He knows he is safe there and knows you love and care about him.

Joan, When your in a facility with FTD, your in a different place both physically and in your mind. Days of the week flow one into another and you lose a sense of time. When you ask him when you should come back you husband has lost a sense of time and place so it's hard to answer. He also is not sure what is happening to him but knows who you are, loves you, and wants to see you.

Your husband is in this place and is not aware he has FTD and what has happened to him and his life. He is safe and comfortable. He knows who you are and where he is but doesn't know what is wrong with him and why his life is what it is. He cannot put together what is happening to him. Your husband cannot put together the facts of his illness, of his relationship to you as well as family and friends. He is in a safe environment and knows it, but doesn't know why. He is not processing, but instead is grasping at straws and can't put it all together. It just doesn't make sense to him and he is not aware of whats happening, just that something is happening. He probably doesn't even realize there is anything wrong, but I'm sure he is going though a measure of uncertainty.

Today I said to him, when do I come back to see you,,,he looked away...I asked again....he looked away..
I said , look at me...I asked again, and he said Fri...it seems he knows, but has difficulty processing the answer,,,is this sort of it???

It would be easy to say your husband is embarrassed and that's why he keeps looking away, but that's not the answer. You got it right when you mentioned he is not processing the question. Your husband is not sure how to answer your question because though it makes sense to him he can't process it. He can't put it together and come up with an answer. Your question of when to return to visit is a simple question, but not to a person with FTD. He is not sure what your asking and why your asking. The question is confusing and he is not processing it. He knows he wants you there and is not sure why your asking and he is not sure what or how to answer. He is also looking away because he is not sure of what's going on and it's frustrating. Joan let me assure you that your husband wants you there. Joan, don't even ask him anymore. Just tell him you love him and tell him you'll be back on Friday.

You are human Joan and it is hard to read the man you love. Not only can't your husband process, you have difficulty processing the fact that he can't process. This is normal. It's different now and you also want to be assured he wants you and knows how much you love him. Joan he loves you and doesn't know how to express it. I would love to be able to tell you this might change, but it most likely won't.

The reason I can give you this advise, is because I have gone through and am going through exactly what your husband is going through now. Every case or FTD is different but the similarities are there. Every day I have problems processing or discerning even the most basic conversations or questions. I can't really put things together anymore and my difficulty processing makes it extremely difficult to make even simple decisions or know if I'm answering questions accurately or correctly.

At restaurants I ask the waiter just to bring me one of there most popular mid priced items without red meat. Of course this is amusing to them, me and others that I might be with. I do make light of the situation, but the truth is I have difficulty just processing a basic menu/specials/pricing and ordering food. Trust me, this is not the same as your basic I'm not sure what to order on the menu routine of everyday life. (I have a lunch date on Sunday and looked up the menu online and already decided what I'm going to order. This is how I live my life, one step ahead of FTD) When you ask your husband, "when do I come back to see you" I know exactly how he is not processing the question. Even though he answers Friday he is not really sure what or why your asking. Trying to explain FTD is trying to explain the unexplainable. Once again I am going to reiterate the point that he loves you and can't express it. When you have any doubts, write to me and I'll express it for him.

As far as unzipping his jacket, that's probably a measure of independence and not wanting to be treated like a child. Your trying to be helpful, but if you see it is disturbing him let it go. My ex used to be kind and helpful going out of her way with little things. The gestures are thoughtful but when your having the difficulties we are experiencing because of FTD, it just awakens other feelings of incompetence and frustration.

Do you bring pictures from home? If not, do not bring the originals but make duplicates or copies and bring them to him. Anything you bring him might get destroyed or lost. Valuables might get stolen. Pictures of the two of you together, vacations, holidays, childhood friends, or any happy time or era might help. I used to look at pictures constantly and put them in different categories. The two or you might want to put his favorites on a wall.

You might suggest for him to start writing letters to you and you might send him some short ones in the mail. I'm not sure if he is writing just while your there or when he is alone. I have picked up writing a few months ago and love it. Trying to get him into a routine of writing after breakfast each day might work. The staff there might be able to help. You both night find a different gene of communication.

Collages or vision boards might help him express himself. A simple piece of paper and cutouts from magazine attached by glue-stick to the paper is very creative and expressive. A friend of mine Ruthie Azarch does this for nursing homes, facilities, and dementia support groups including mine. I did it for the first time last week and was shocked by how much I enjoyed it. Joan, I could not follow her basic instructions of a theme, but had a great time cutting and pasting pictures and eyes and coloring the paper before I started. Here is a link to Ruthie's Website and feel free to contact her with questions on this type of therapy and how well it works for those with FTD/Dementia's.

Ruthie Azarch

www.collagaparty.com

Music - he might really start enjoying music or radio now even if he hasn't in the past. A small cheap iPod or headset might be very helpful. Studies have shown people with FTD actually have or can develop musical talent. I'm not sure of the rules of Brookhaven Manor, but maybe a small flute or harmonica might give him enjoyment and the happier he is the happier you'll be.

Chess, checkers, backgammon and dominoes. With FTD you never know what might grab his attention and challenge the mind.

Crosswords, line mazes and those and type of thinking game which can get him to exercise his brain would help.

Joan, you need to keep trying new things and sooner or later there is a good chance you'll run into something he will like and maybe something you both can enjoy together.

Make sure you constantly reassure him that he is doing okay and everything is alright. It's important for him not to worry about things.

Every day I'm in contact with wonderful people like you Joan that I try to help. Not only does this keep me going, but it gives me further insight into FTD. I can only hope to keep disseminating the knowledge I acquire to help others.

Ruthie Azarch business "Collagaparty" works Collages/Vision Boards with a number of "Memory Club" (Dementia support groups) in the New York City area.

Personally I'm not an arts and crafts type of guy which was why I was shocked at how engaged I became in this activity. Not only was I engaged in the project, but noticed how Ruthie empowered members of the group to express themselves on paper and discuss openly there feelings on the theme which Ruthie highlighted to us. Ruthie also works with Gilda's club, private functions and parties, with Alzheimer's patients and nursing homes.

Ruthie Azarch

www.collagaparty.com

I am by myself and am my own caregiver. It's clear to me I would not be able to help others and accomplish what I am doing if Tamara and I were still together.

I take Namenda, vitamins, herbs, and supplements but take absolutely no other pharmaceuticals to keep myself as clear so I can think and articulate accurately what is happening to me with bvFTD.

Howard

FTD - Explaining Irrational Responses and Questions

2011-10-13T12:12:00.003-04:00

Living daily with FTD I find myself constantly answering questions with irrational responses or asking questions that have no relevance to the topic of conversation. I'm always responding with "are you angry at me", "Am I irritating you", "Did I so something wrong", "I did it again didn't I?". These are constant questions from someone living with FTD. Often I'm not sure of what the person is saying or meaning. I'm not sure if they are being inquisitive, sarcastic, or critical. I have one friend who constantly tells me one thing, and then tells me he is playing devils advocate later so I never know what the hell he is trying to tell me.

People say they understand FTD and what's going on in the person's mind, but very few do. Caregivers try their hardest but it is difficult to understand how the person you are talking to sometimes understands what your saying and sometimes doesn't. It's especially difficult when you know and love the person and want to believe they understand you and you them.

Unfortunately the world can be a difficult place with FTD being a cruel joke on one and all.

It is extremely difficult to explain that your thought process is corrupted and the effect that has on you understanding what people are saying to you. It also affects how we read facial expressions and body language. A person can say or mean one thing and I will take it a totally different way. I constantly try and slow myself down and not answer to anyone quickly as to not misinterpret, but it's virtually impossible. When you're in a conversation and engaged with someone you need to respond to questions and comments. Circumstances are constantly changing and I find myself often without a clue of what is going on. Getting lost in the sauce is easy to do and sooner or later I will always say "What did you mean by that?" The response is usually, "Mean by what?" The person has no idea, that I have no idea, that I have no idea of what there intending to say(yes, I did say that and say that I did.) Sometimes I would say things and would be so far off base that people would just look at me and tell me I'm way off base or I have a vivid imagination. Very hurtful and frustrating for everyone.

I have been making those same comments for years now and it's simply because 1 +1 = 5. People with FTD cannot take facts and put them together to come up with a makes sense conclusion. If you say it is 75 degrees outside but will rain hard later, there is a good chance I will not take an umbrella, but will instead take a heavy trench coat.

____________________________________

A person that I'm in contact with wrote a couple of weeks ago that her husband took there children out to there Church after midnight to do landscaping. He marched back in with the kids at 6am. He explained that it was cooler at night than during the day. They do not live in the desert.

I had a remarkably similar incident.

My son Myles came to visit me in NY during July and I wanted to take him to a NY Mets baseball game. The day of the game was supposed to have a thunderstorm and possible showers. The next night game was supposed to be clear but 5 degrees warmer. 1+1=7. I took him to the game with rain because it was cooler and probably wouldn't rain that much. Made total sense to me. Guess what? Myles and I had a great time dry under the grandstand while the players never even made it out to the field it was raining so hard.

What's interesting about the two incidents is the flawed thought process that brought myself and the other man to come to the conclusion that these were good decisions. These are typical examples of things that people suffering from FTD do every day. Some people think we are crazy, but we are not.

Our decision process is flawed and we simply cannot put facts together to make a rational decision.

I would do anything for my son and so would the man in the Church/landscaping story. We both love our children and try to keep intact our relationship even though it might translate into what is an irrational act.

It was a rainout but we were determined to have a great time no matter what and Myles and I had a blast.

I'm sure the man who took his kids on the midnight landscaping foray also had a good time with his kids.

They both turned in harmless adventures that will be imbedded as harmless FTD adventures.

Film about Howard Glick for AFTD

2011-10-06T09:22:00.006-04:00

Hi Everyone,

I want to thank everyone for there support. This blog was started in July with the intention of advocating for those with FTD- Frontotemporal Degeneration. The purpose was to give insight and increase awareness of FTD to caregivers and the medical community by articulating my first person experience. I didn't realize at the time awareness of FTD was built upon family, caregiver, and medical community experience. Virtually no one diagnosed and living the disease communicated what it is like to live with it.

For those new to the blog, my bvFTD symptoms started manifesting themselves in 2004 with the first SPECT scan showing it in 2006 and further progression on a PET scan in 2010. I was misdiagnosed as bipolar for 6 1/2 years.

This effort by me to articulate what life with bvFTD is like has been received successfully with my involvement now in numerous online forums/support groups etc. worldwide for FTD/Dementia. Between my blog and email communications I have received over 4,500 correspondences since July. I also set up a Facebook, Twitter, and Linked-in accounts and I have absolutely no idea how many correspondences I've had with those.

Simply put, I eat and breathe my efforts 7 days a week, every moment possible. I am relentless in my efforts to further public awareness and help others.

This is my life and I love every minute of it. I never sleep more than 4 hours a night. My laptop is never more than a foot away from me and in the absence of a woman in my life sleeps right next to me. It even has a special cuddling and snoring app. Right now it's 3am and I'm typing away. Though I am exhausted and am aware every fleeting moment of the symptoms of FTD, I have decided I am going to ignore FTD and press forward to create for myself a happy productive life. FTD is just going to learn to coexist with a Howard Glick that will manage the symptoms.

FTD can hang out, but it's not going to rule my life.

In an effort to help me in my efforts to increase awareness of FTD, I was contacted by Sharon Denny of AFTD and Joe Becker of Thinkfilm Inc. about making a film of my experiences dealing with being misdiagnosed, diagnosed, symptoms, and daily challenges with bvFTD.

I am currently filming my thoughts and experiences with the intention of making a valuable contribution to the field of FTD. The filming is being done with the help of an intern, Lena Pressman (NYC reporter Gabe Pressman's granddaughter).

The object of being a voice of those with FTD is to help improve awareness, inspire others with FTD to get back on their feet, help give insight and understanding to caregivers about loved ones, professional education, and the development of better resources that might one day lead to a cure.

Below are just a smattering of responses I receive on a daily basis which help keep me motivated moment by moment with my struggle with FTD.

Thank you again. Truly this has been so helpful for me. I'm now sobbing and can no longer read the screen, but we have to get it out!!!! :) I am so thankful for all of the wonderful memories I have and also thankful he is not suffering. Keep on keeping on...Take care!

Your blog is so eye-opening. Thank you much for sharing your story, as it is very helpful to those of us who love someone with dementia--no matter what type. Take care and God bless.

I'm catching up on your blog as we speak! :) Your posts sound so familiar to me...similiar to what we have been through with my dad!!! FTD does not define you guys and never will and there are people out there who care!!!!!! I just want you to know that. I care!!!

Hi Howard - I found your blog yesterday and started following it. My mom has FTD (She's 57, and has been ill for about seven years now). I found your blog to be wonderfully insightful. My mom doesn't really discuss or acknowledge her condition and is in a later stage - she is suffering some major memory loss already. Anyways I wanted to thank you for what you're doing. So many times I have tried to talk to her and understand what she is going through but it never brings me any answers. My husband is in the Marine Corps, and we are currently living in Japan, while my mother is living in California and my wonderful grandmother is her sole caregiver. I feel so detached from the situation that it makes me crazy! Your blog helps me feel a little less in the dark.

Hello Howard,
My apologies for the time it has taken to get back to you – I was away on vacation for two weeks and am just back as of yesterday!
Thank you for taking the time to write to me. I am happy to discover your blog. I work with people living with dementia at different stages, and am always so happy to hear people speaking out about their experience. Our groups are always happy to find out about new resources as well.
Thank you for getting in touch! Also, you say you love Montreal, I love New York (doesn’t everyone?).

early dementia said...
Howard this was a brilliant article. Thank you for being so enlightening and creating such a safe space for those experiencing dementia themselves or by a close person in their lives. People will benefit from this and become more accepting and understanding in light of what you share.

Thank you Howard Glick. You are the most powerful and empowering person know. I am motivated and can move mountains because of your example. Like you I passionately work to empower the lives of others. Thank you Howard! !
Your blog is informative, inspirational, insightful and imbued with a sense of humor, kudos to you! Keep on keepin' and blogging on!

What a brilliant way of taking arguably the most devastating moment of your life, and in one year turning it into something unimaginable.
"Your article was extremely moving and educational to me.. someone who is just learning what you are experiencing.
Anyway, I'm really impressed with the honesty and candor (humor and grace) you express on your blog and I'm looking forward to following your life adventure.
Never give up your mission, Howard!
- Minds i said...
Thanks Howard, this is a wonderful blog. It is communicating to the world what I already know, that your journey has been remarkable, the admiration and respect I have for you is equally remarkable. The potential of this blog is for caregivers, the medical and legal communities and people managing dementia; it's already a contribution.

You are definitely making a difference.

Your honesty and insights
are remarkable. Your drive to spin gold from straw (seems like there should
be a more "ironical" metaphor) and help others is a gift.
i am reading your blog in its entirety and i am enjoying it. your candor and enthusiasm for life is nothing you should cry about!

Your ability to educate and touch each and every one of us with your candor and your honesty is a gift. And while facing adversity, each gift you give is immense.
This is just so so great.
How wonderful, how great.
Thank you very much, Howard. My friend was just diagnosed with Pick's. I sent your Blog to her parents and her mom is very interested in Blogging.
You are inspiring! Thanks so much!

Thank you so much for this. You are an amazing and courageous person! My father had FTD and passed away 14 years ago at age 58. I was a caregiver for him. I always wondered what he thought about living with his illness. He once said it was sad, but then lived life to the fullest and we made every day count. You are making every day count and I honor your courage and outlook to do the best possible with what life gives us. For 6 years I have been facilitating a support group for adult children of a parent with young onset dementia. I am passing along your blogsite to them Thank you again.

All the best,

Gary Radin - Author "What if it's not Alzheimer's"

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

I went from making a 100k+ a year to now being disabled with $1.45 a day in food stamps.

I now know the true meaning of purpose in life. I am living a dream few experience by making a profound difference in peoples lives. I will never take for granted one moment in this lifetime. There is no question I appreciate being able to do such meaningful work. As long as I'm breathing, I will continue on this path.

The only thing missing is the ability to spend more time with my children who reside in Seattle and the possibility of finding a partner in life.

Howard Glick

FTD - I'm Not Dead Yet!

2011-09-28T11:04:00.017-04:00

For those or you new to my blog, the previous article,"The Pain of Being Misdiagnosed" was about how I got sick and was misdiagnosed for 6/1/2 years as bipolar. It described the horrors of everything from being kept in a medically induced fog, to be given twice the normal amount of ECT's 50+ (shock therapy), to having a surgically placed experimental device in my chest VNS Vagus Nerve Stimulator. It also discussed the day to day nightmare that tore apart my soulmate and caregiver until we finally separated. After a tragic incident a year ago, I was hospitalized for 6 weeks where they discovered I had a rare neurological disease called FTD/Frontotemporal Degeneration.
If you haven't read the the previous article, " The Pain of being Misdiagnosed" you should.

In June 2010 the Psychiatrist at NY Cornell Hospital decided to put me on Aricept after it was discovered I had FTD/Frontotemporal Degeneration. The Psychiatrist should have checked with a neurologist. Aricept is used for Alzheimer's type dementia and it is well documented that there can be adverse reactions if given to someone with FTD. Doctors mistakenly give Aricept to people with FTD because it is a form of dementia. FTD and Alzheimer's both fall into the category of Dementia's but where Alzheimer's effects memory, FTD does not, at least until the later stages.

Please remember, not everyone has adverse reactions to Aricept. If a person has been taking Aricept for an extended amount of time, there is less of a chance of an adverse reaction. If there is any question that it might be having a negative impact on your love one, don't panic but contact your neurologist.

Paradoxical Reaction
I left the Hospital and went home knowing I had this rare form of Dementia and that my life was forever changed. It was still feeling the effects of the pharmaceutical cocktails I was kept in a medically induced fog on for years. I was feeling clearer but was having strange issues with my behavior (nothing violent or crazy, just stranger than normal). Just FTDi-sh. There were also these strange episodes:

I was getting very confused and disoriented on a consistent basis. There was absolutely no pattern but I would seem to have these episodes that would last minutes to hours.The handyman found me out in the street and took me home. I would get on the subway and not be sure where I was and ride the subways for hours. I could easily stare at wall in a daze from minutes to hours. There were plenty of times people would talk to me and I couldn't understand a word they were saying. It was like they were talking Martian. I would stare at them with a blank look on my face. I would also could not tell which way traffic was moving and New York Taxi Cab drivers will aim for you if you step into the middle of the street.

It was dangerous and I was getting worse.

I also started looking up Picks disease/Frontotemporal Degeneration on the web. Everything was devastating. I was consistently reading people with Frontotemporal disorders typically live only 6-8 years. This was consistent with The Mayo clinic, The NY Times, The US Department of Health and Human Services etc.

I had the disease since 2004. That means I had FTD for 6 years. I was totally disoriented a good deal of the time and it was getting worse. The message was very clear:

Howard Glick was about to die.

Finally I found a wonderful community neurologist in September who specialized in Dementia. Dr. Kyra Blatt had an office only a few blocks from where I lived. My lifelong friend David used to take me there every other week. Dr Blatt BANNED from reading anything else on FTD on internet. I was obsessed with the fact that I was near death and who could blame me.

Dr. Blatt contacted the Neurology Department at Columbia University Medical Center and confirmed that I was having a Paradoxical Reaction to Aricept and immediately took me off it. It took what was probably months for the horrible side effects of Aricept to wear off.

I went through four months of having a terrible Paradoxical reaction to Aricept and mixed with the negligent life expectancy statistics written in well known medical periodicals and newspapers I thought death was imminent.

Outlook (Prognosis)

The disorder quickly and steadily becomes worse. Patients become totally disabled early in the course of the disease.

Commonly, Pick's disease causes death within 2 - 10 years, usually from infection and sometimes from general failure of the body systems.

_____________________________________________________________________

U.S. Department of Health and Human Services

National Institutes of Health

"People with Frontotemporal Disorder typically live 6 to 8 years with their conditions, sometimes longer, sometimes less."

September 2010

_____________________________________________________________________

It has now been 14 months since I left NY Hospital and I am doing everything possible to keep my health stable and possibly slow the progression of FTD. I am constantly using brain exercising techniques such as strategic thinking as well nutrition, meditation, supplements, exercise, mindset, and many, many other changes in my life to control the symptoms of FTD. Since I went off the medication Aricept I have been taking Namenda.

All I know is it is a constant battle and I am doing great. Each month I am feeling better and stronger. I am in a constant struggle to keep the symptoms of FTD under control and though life is difficult, I once again have found a sense of happiness and purpose in my life.

Sharon Denny - Program Director of AFTD - The Association for Frontotemporal Degeneration- Sharon Denny came to New York to visit me a couple of weeks ago. She told me that because it is a rare disease and there is new data all the time it a has been discovered that people are living up to 20+ years with FTD.

____________________________________________________________

Association for Frontotemporal Degeneration
Management and Prognosis

Although specific symptoms may vary from patient to patient, FTD is marked by an inevitable progressive deterioration in functioning. The length of progression varies, from 2 to over 20 years with a mean course of 8 years from the onset of symptoms. FTD itself is not life-threatening.

AFTD- September 2011

Now if I could only find a partner who wants to share a wonderful life that isn't petrified of the letters FTD, life would be perfect.

By the way, I'm not planning on going anywhere for a long, long time.

The Pain of being Misdiagnosed

2011-09-18T11:08:00.008-04:00

First some housekeeping. I know I am new to the world of blogging and so are many of the people visiting this blog. On the right hand side you will see a tab highlighted in blue that says, "Join This Site". If you click on it you can join confidentially or have your name and/or picture listed like some of the people that have already joined. By joining you will be sent an email when I write a new article and it is posted. I will be writing new articles weekly. I have also recently joined Facebook so you can join the blog through my Facebook page.

*There is a shortened version for smart phones and tablets. If you don't see, "Join This Site" scroll towards the bottom of the page and above my profile you will see a tab for "View Web Version". Click view web version and "Join This Site" will appear towards the top of the page.

Thank you,

Howard Glick

Now for some history of what being misdiagnosed was like for me and my ex-partner Tamara. It took 6 years for me to be diagnosed with FTD Frontotemporal Degeneration. We must spread the word and create a deeper public awareness so others do not suffer the same way.

This first section is for caregivers and family members that are having extreme difficulty taking care of someone with FTD/Dementia. You are doing an admirable thing and you are very much appreciated every moment of every day whether you realize or not.

Tamara was helpless and so was I. I had absolutely no idea what was going on with my behavior. The doctors were saying it was depression and that escalated into a bipolar diagnosis. I was never depressed in my life. I had difficult times like anyone else but no depression. Nothing worked and everything kept spinning out of control. Life was on a continuous downhill spiral. I was no longer working and I loved to work. We rarely had intimate moments because I was so drugged up. I was a walking drugged up shell with nothing inside.

Tamara already spent a good deal of her life being a caregiver to other relatives and it just wasn't fair to either of us. Now the person she loved turned was in a medically induced fog and out of control when the drugs wore off. As the drugs wore down or my body acclimated to the drugs I would have fits of anger and frustration. I was hospitalized twice because of my depression. I was found wandering outside half naked. Tamara had to put her career on hold to take care me. There was always a doctors office or a test to be done. Her life was wrapped around being my caregiver and not my soulmate. All you caregivers out there know this all to well. A good deal of the time I tried to act like there was nothing wrong. I remember acting that way now and a good deal of the time I didn't realize there was something wrong, but my life was all wrong and I knew in my heart everything was wrong.I was miserable. I was taken care of like a child and I hated it. I broke many cell phones or would have fits of anger. Not at Tamara, just at the world in general. The doctors of course would then keep increasing my medications or trying new medications.

As I've always said, I don't blame the doctors. The doctors were just doing the best they could do with the information at hand. On the flip side I know now that there were mistakes made but I'm not going to do the blame game.

Nothing was flagrant or malicious and the fact that I'm sitting here writing this shows the table have turned with my health. The medical community has come though and helped me to the point where I can function again. Every day is extremely rough with incredible challenges that just don’t stop, but I refuse to give up no matter how tough it gets.

There is no question that I have had best people and help humanity has to offer helping me. l also have had an overwhelming desire to get back to a happy purposeful life again, no matter matter what obstacle was thrown in my path. To me it is called human spirit.

Tamara knew I wasn't bipolar from the beginning because of direct experience with a family member. She tried to get me to try alternative treatments but I wouldn't listen. I wasn't capable of listening because I was to sick and unaware of my real illness. All I wanted to do for years was sit at home and watch TV or drive around in circles. I kept going to the same restaurant day after day eating the same thing. I avoided people as much as I could and would not return calls to people that were worried about me. I look back at those years now and I now see how scared I was. Here I was never unemployed a day in my life, living a really good life and now it had literally changed in a short period of time. Work, relationships, everything. People would call from work and I would never call them back. I didn't know what to tell them. They were also shocked how quickly this happened. FTD is cruel and vicious I was driving everybody crazy with my behavior. I was frustrated, angry and extremely irritable most of the time. I broke countless cell phones in half and tossed them out my car window or into the trash. I was saying things to strangers all the time. I was cursing at people for no reason. I also couldn't find my way home half the time. I would be on the same block I lived on and still couldn't find my way home. The doctors kept trying new drugs and nothing was helping.

Yes, there were good times, but they were few and far between. I never had an easy life, but I had a good life. There were significant accomplishments in my life that I was proud of and I was never in trouble.

I read every day now about caregivers describing the person they are caring for not listening to them about there illness or taking any advice. It comes from being scared and not knowing what is going on. Let me repeat that. People with FTD cannot comprehend what is going on with us and our lives. All we know is we are stuck in a rut and it's almost like we want to wait it out. We are waiting and waiting and sinking and sinking. There is always a fear of being around loved ones or strangers and getting that strange look. We know everyone knows.

I know when I’m with people they can tell somethings amiss. You have no idea how disconcerting that is.

We know my personality dramatically changed and we didn't understand why. Even when were told we have a brain disorder, it is still incomprehensible. All we know is we lose our jobs, our children look at us with fear and confusion. Family members can't wait to get us out of the house when we visit. Some or our friends look like they don't really want to be around us. There is one person stuck with us out of love and that is our partner. I didn't know I had FTD. I know and understand now all the pain Tamara went through moment by moment. Back then it was terrible and I also felt terrible about what was going on but I didn't understand it.

Now I understand what happened every day for a good part of 6 years of looking forward to nothing but death. Now, not only do I understand but I'm pissed off enough to get up every day determined to be happy again in life and have a purpose. Guess what, now I do have my life back.

We look at doctors as Gods and they are only people.

I had excellent medical care in Seattle but FTD is elusive and was more difficult to detect back then. My doctor had me on various pharmaceutical cocktails for years and nothing improved my situation. It only helped deposit me into a deep medically induced fog and as soon as the meds wore off, I would go right back to the same behavioral problems that I was having. There was no cyclical mood variations that happens with bipolar, my mood and behavioral problems were constant.

I went through 6 1/2 years of hell being misdiagnosed as being bipolar. Never mind the drug cocktails, I had 50+ ECT's (electric shocks) with the doctor pronouncing that he never has given anyone so many ECT's and we were in, "uncharted waters". Now I know why they weren’t successful.

I also had surgically implanted (VNS -Vagus Nerve Stimulator) in my chest with a wire attached to the Vagus Nerve giving it electric impulses to stimulate the brain. Tamara and I waited for months on a waiting list to have this pacemaker installed. It was experimental for people being bipolar but was currently being used for epilepsy. We got all the approvals and were excited at the prospect of working and us getting back to a normal life.

The VNS device is still in my chest like a leftover piece of space junk.

Of course that never worked either. I was an experimental lab rat. At the time one neurologist thought it might be an underlying neurological problem, but his voice was silenced amongst all the other doctors that insisted I was bipolar. Me, I was sick and numb. Tamara was incredibly frustrated every moment of every day having to deal which we know now was behavioral problems due to FTD as well as me being over put into a medically induced fog.

Finally, after a dramatic incident here in NY Tamara left me.

For two years I was trying to talk her into leaving me because she was so unhappy and she wouldn't. Tamara had the most beautiful smile and her smiles were few and far between. The man she was with was not the man she met, but someone else who was totally out of control all of the time. Tamara never knew what to expect. If it wasn't my behavior, it was memory problems. There was always something to be stressed out about. I was also miserable because she was miserable. had every reason to. It's now a year later and Tamara and I are still close. Tamara has found happiness with someone else and I am happy for her. After what Tamara went through she deserves all the happiness in the world. She is still helping me now even though we are no longer together. Do I miss Tamara, Yes. But as I have said to her many times, "Misery Does Not Love Company".

Guess what, I also have once again found happiness and purpose in life.

My recovery will be next

New Relationships with FTD

2011-09-13T12:43:00.016-04:00

In life, you cannot stop the constant flow or ebb the flow. Attitude and mindset can be used to adapt to any situation, therefore bringing happiness and contentment in life.

When I started this blog it was with the intention of writing new article 2-3 times a week. Unfortunately I have been going through FTD related difficulties which I will address later. From the neck down I am in excellent health. I'm just slowly losing my mind. Even with losing my mind and being 100% disabled, I do notice that I am now in better mental shape than most people in NYC. As far as physical health, my blood pressure which was extremely high for years has now been normal for a year. I do attribute that to less salt in my body due to the amount of tears shed over the last year.

Well, I lost another person to FTD. No, not someone that died. I've never met anyone else with FTD. We have been seeing each other for a little over a month. She is incredibly direct, funny, and understanding. She was also very religious and was affiliated with one of the more compassionate religions. From the beginning we both have been clear that it would be only a romantic relationship because of my health. Much of our communication was done over the internet. The first few weeks over our friendship we went through a few major crises with me unintentionally hurting her with things I said.

There is no way for me to stop with the sexual innuendos and inappropriate remarks. It would take me an hour to dig myself out of a hole, not knowing if I could. She is a wonderful woman and she tried to get it. She hung in there longer than most. Last night it happened again and she told me she didn't want to see me again. I can't blame her. She tried her best. I totally understand that I look normal and sound normal a good deal of the time, so when something I say is inappropriate the person is shocked and thinks I'm insensitive or have as in this case only sex on my mind. She didn't realize that nothing is further from the truth. She is now out of my life and I'm sad.

This happens all the time, but every once in a while I think there is someone there for the long term as a friend and they’re gone.

I am painfully aware that I am unaware of what I say a good deal of the time, it is just difficult for others to comprehend. I will miss her.

Alas. But there is a new person in my life who so far is hanging in there. A good Starbucks friend of mine, Alice, a health and medical writer with a PhD. Alice quite often sits across from me. She is intelligent, unpretentious, incredible writer and a loving single mom. I met Alice a few months ago and we have become good friends. I see Alice just about every day at Starbucks and she the only new person I've met in a long time that gets me and FTD.

She has that natural beauty and aura that is always turning heads. Alice is 20 years my junior and our lives are heading in different directions which is good so I cannot even think about her as anything but a friend. Still I feel like it is another cruel joke of the universe that such a beautiful woman in every respect has been thrown into my life and I will have to be tortured about the, "What If" possibilities if I was 15 years younger and healthy. A friend of mine first introduced the idea of starting a blog to give me a positive thing to do and have purpose in my life. This was something I was looking for for a while. Alice took the time to show me the site I that could use to create my own blog. Like most things in life I pounced on it. Alice is consistently helping me by reading my articles before I publish them to make sure I won't have anyone chasing me home or suing me for my food stamps. I am a real pain in the ass and I really make a concerted effort to let her do her work and not drive her crazy. Alice's articles have been a huge help for me in putting together and keeping together my life. I'm attaching a link to an article which she just sent me the other day that anybody affiliated with any major illness should read. Caregiver or patient.

http://www.thedoctorwillseeyounow.com/content/aging/art3428.html

I am also attaching a link to her Forbes health blog which has plenty of articles. Here is a particular one I enjoyed about the psychology of yoga:

http://www.forbes.com/sites/alicegwalton/2011/06/22/penetrating-postures-part-ii-the-psychology-of-yoga/

Of course now I need to add on a cute FTD story. They’re not all nightmares. This happened about 2 weeks ago:

Please remember I go this Starbucks 7 days a week for a minimum of 3 hours. I know quite a few people there and they know not only about me and FTD, but the work I am doing to help others. I sort of notice when Alice is on line for her herbal tea refills, I don't gawk or stare, but I notice. I am also very careful about monitoring my behavior as much as I can. People that know me do give me a gentle nudge once in a while by saying, "Howard you look like your getting a bit tired" or "Staying late today". I realize I'm being told I'm slipping and it's time to go. It's usually only 9:30-10:30am.

Anyway as I was previously saying, I do notice Alice when she is on line just like I notice quite a few other females. A few days ago Alice had on a different manufacturer’s jeans than she usually wears and I noticed it, but of course didn't say anything. At one point she sat down and said, "Howard, that's a nice shirt you’re wearing". Without thinking, I retorted, "Thank you Alice. By the way those jeans fit you really well, they look much nicer on you than the Levi's you usually wear". Alice turned a little red and of course I couldn't help myself and I said, "you’re blushing". She said, "Of course I am, and those aren't Levi's.".

Later in the day I sent Alice an email: “Alice, congratulations! You have been officially FTD'd.” We still laugh about it.

I saw Alice this morning and told her how much I value her friendship. I told her when I see her sometimes I think of the first US astronaut to go into space Alan Shepard and the Shepard Prayer: Shortly before the launch, Shepard said to himself: "Dear Lord, please don't let me fuck up".

All relationships with FTD are extremely hard. In life, there are many unknowns. I might live another 3 years or 30 years. There is no crystal ball and absolutely nobody knows. I do value family, friendship, and love.

The romance and intimacy that I had in the first relationship was wonderful while it lasted. I have been in a string of these since last year when I was diagnosed. It’s not easy being 53 with a libido of a teenager. Another identifiable FTD symptom.

What has developed with Alice is a wonderful friendship and I’m hoping she will stick with me through thick and thin. Yesterday, I went for a walk with Alice and her adorable 2 year old son. I was well rested having a nap. Of course I cursed a couple of times and Alice asked me to try and watch my language. It took a concerted effort to slow myself down and monitor everything that came out of my mouth. I still blurted out a few things over the hour we were together, but for the most part I kept it together.

I cannot tell you how difficult it is to keep it together. Keeping myself silent and not cursing, saying sexual innuendoes, making derogatory statements about a dog etc. Every 2 minutes it was something else. I mentioned this periodically to Alice.

In the last year I have worked extremely hard to deal with the symptoms of FTD. In other words I still believe it’s mind over brain matter, though others believe there is less brain matter and behavior cannot be controlled. Either way, it doesn’t matter to me because I am going to continue to be happy and lead a purposeful life with meaningful friends.

My true friends and children will always be there for me, just as I will always be there for them and maybe, just maybe I will be lucky once more in life to find true love and romance together again.

Wandering

2011-08-24T10:22:00.009-04:00

New shoes with built in GPS for wandering.
http://www.thestar.com/news/article/1079210--these-shoes-weren-t-made-for-wandering

It's a bit after 6am and I am at my office in Starbuck 181, Northern Manhattan. As usual it has been a unique week.

A few days ago I went to the local supermarket and picked up grapes for dinner. It was busy with a long line at the cashier. When it came to my turn I swiped my EBT card and the cashier after a few moments announced out loud, "is that Debit or Food Stamps"? I said, "Food Stamps" and she said, thats $5.95. I quickly retorted that I was happy that I only received a $1.45 a day in food stamps. At that daily allowance, I know I would be at least spared four days worth of public humiliation.

This story of unintentional humiliation I have repeated to numerous people over the last week. Most people's reaction was pretty much the same, until I told it to my caseworker from Jewish Home Life care. Julia's reaction was, " Howard, all you had for dinner was grapes? Have you been missing meals? Do you have food in the fridge? Have you been eating? My answer was sort of a stutter Umm, Umm, Umm I guess not. I had started wandering again and did not realize it.

Julia (not her real name. I don't want to be sued for part of my $1.45 a day food stamp allowance) nailed me and knew exactly what was going on. I started wandering again. What is wandering? First of all everybody wanders once in a while just like everybody forgets things once in a while. For someone with dementia, wandering takes on a whole new dimension. I started pacing and wandering a while back. Usually I leave my apartment with a purpose or a plan and it just gets out of control. Last week, I was in transition to a new home health aide and did not have food in refrigerator. I would leave the apartment and go from supermarket to supermarket wandering up and down the aisles and buying nothing. I get confused and disorientated and sometimes don't even know where I am. Then I walk around to the local neighborhood restaurants and look at the menus. Sometimes I actually go in to a restaurant and sit down but leave before it's time to order. I can literally do this for hours and go home empty handed.

I used to go downtown and start with a single purpose in mind like buy pasta sauce from Trader Joe's. I would usually make it to Trader Joe's but frequently not buy anything and start wandering. This can become dangerous in summer because of not properly hydrating myself. It also can become extremely dangerous because when I get tired, confused and disoriented I have a tendency to walk out in the middle of the street without realizing it. Of course living in NYC, taxi cab drivers take aim for you when you do this. I can literally wander for hours or until I'm on the verge of collapse. The subways can be a safe haven for me. If I get disorientated in the subways, I can just sit in the train for as long as it takes till I feel regenerated. I have wound up taking the A train all the out to Far Rockaway where the train is elevated. That a couple hour ride. Welcome to the world of wandering.
I like to consider myself being like the Starship Enterprise wandering the city of New York instead of the Universe.

I never panic because I know that no matter what, I will find my way home at the end of the day.

I have set up parameters for myself now that I know how dangerous wandering can be. To minimize risk I now go downtown only early in the morning and make sure I get home no later than 1pm. Afternoons are always the worst for me and I need to be laying down or with someone. It is no longer safe for me to be by myself in that state.

People with Dementia wander and even though we quite frequently start out with a purpose or a goal in mind, it frequently becomes secondary. It is important for a person with dementia to know his or her limitations and to set up guidelines to keep themselves safe. We have discussed in Rivestone Memory Club what to do in the event you get lost. People reacted with, find a policeman, a bus driver, call a friend or relative. For me, I wait and figure it out. My family used to talk about putting me in an institution or group home so I have a fear of anyone finding out when I am lost or disorientated. I always figure it out and find my way or help magically appears. I do have a medic alert bracelet from the safe return program of the Alzheimer's Association. Though I have never used it, I highly recommend it's use for anyone with any type of dementia. Better to be careful!

Julia who I mentioned earlier is my caseworker for Jewish Home Life care. She is a seasoned social worker who meets with me once a month to help me with issues. I'm going to cut and paste a letter I sent to her earlier this week.

"Just want to thank for all your help and offering to help me with letting me know my options for long term care. It's a difficult topic and being my own caregiver I need to do whatever arrangements I can, while I still can. Also thank you for reassuring my I'm not alone and there are people to look after me. Even though I am lucky enough to have a vast network of caring loving people, the fact is I do spend most of my time by myself and most of my contact is mostly by internet.

I don't know if we want to take another shot at increasing my $1.45 a day in food stamps. They might lower it again. Thank you working with me on the appeal to try and reverse the denial of a rent freeze. I guess it was denied because they found my secret Swiss bank accounts as well as my Chalet in the Alps.

I have a new full time home health aide starting this week. Wish both of us luck :-) . I didn't even realize how I was starting to wander again until you brought up my food issues last week.

My Blog has now gone international with visitors now coming to visit from 10 different countries. I am also researching getting my blog translated into Spanish, Chinese etc. There is no question I couldn't be accomplishing what I am doing without the help of Jewish Home giving me a few hours a day to function fully. I'm hoping to show my appreciation by helping others".

Thanks again for everything,
Howard

FTD/Dementia Support Group

Kickstarter

FTD - Me Wrong? "Howard's Brain" update

FTD Film - "Howard's Brain"

AFTD Education Conference 2012

Lunch with a fellow FTD'er

Valentines Day and FTD

FTD - Drugged Up

FTD - Pills and Memory Loss

FTD - Suicide

FTD, Cancer and now a Heart Attack

FTD - Hygiene and Loss

Documentary and Life Update

Violence and FTD

Update: FTD Patient Support Group

New FTD Patient Support Group

AFTD article on Howard Glick

FTD - Distraught Over Being Unaware

Forbes Magazine: A Businessman's Battle with a Rare Neurological Disorder

To Whine or to Wine?

FTD - I'm in the War

The Value of Support Groups for Caregivers and Patients

FTD - The Insidious Disease that Lurks in the Shadows

FTD - Explaining Irrational Responses and Questions

Film about Howard Glick for AFTD

FTD - I'm Not Dead Yet!

Health Guide

Outlook (Prognosis)

The Pain of being Misdiagnosed

New Relationships with FTD

Wandering