FTD and on a Roll

On a roll here at McBucks. A woman just walked in from the deluge outside soaked from head to toe. I started laughing hysterically out loud. She was at the cashier dripping and staring at me (along with all the other customers). She was half a store away at the cashier. As she stood there dripping she said, "what's so funny about this" her hands outstretched. I said loudly across the store, "don't worry, you won't melt, stain and I hope not shrink".  Considering she's 4'9", I could've been in trouble. She looked at me and said,"but I could get sick".  There was a moment of awkward silence and we both then started laughing. 

A new wonderful mom & pop coffee shop opened up right across the street. Cafe Bunni was opened by a lovely couple. It is tiny and the coffee is what McBucks used to be before it went mainstream. Absolutely delicious. I urge all of you coffee drinkers to give your neighborhood mom & pop cafe a shot. Right now because of the generosity of my readership and others I have about a $100 credit at McBucks. I'm making a slow transition to Bunny. I have to give credit that Starbucks corp. did listen and make changes after there disastrous renovation. 

A funny historical note. I used to not drink coffee for the longest time. I started drinking coffee 18 months ago because I started coming to Starbucks.

Certain corporate things do raise my blood pressure. The Starbucks corporation has developed there own language for the McBucks crew to use. They had a recent promotion. If you purchased something in the morning they would give you the receipt for a discount on some product in the afternoon. The first day I remember standing there facing the McBucks "partner" cashier and he proudly announced with a giant Stepford Wives smile. "Would you like your Treat Receipt".  I said "what" with a you have to be kidding me look on my face. He said, "A treat receipt for your afternoon snack". I said no thanks. By day 4 or 5 I couldn't take it anymore. After hearing, "Would you like your Treat Receipt"? I retorted with, "What do I look like a fucking dog". "Treats are for dogs and animals. You guys need to start talking like humans, not corporate lackeys". I felt like reaching across the counter and choking him to death. Urrr No one offered me a treat receipt after that. 

The point here is not that the workers of Starbucks are inauthentic and unoriginal because of there scripted corporate lingo. The point is a man with a rare progressive behavioral disease called FTD that can't help but react in an aggressive way a good deal of the time. Since he can't control himself, this is one of many symptoms that has put his life in ruins. The poor guy behind the counter who looked like he was 15 was in shock with his mouth open. People in line were staring at me like I was crazy. It's some life. 

It wasn't Starbucks and the service in the end. It was me not being aware that I'm unaware till after the fact. Even though it was pissing me off for days and I didn't say anything because you don't do that, I did it even knowing that I shouldn't do it without even knowing I was doing it.

Things are looking up these days. Why? Mindset and positive attitude. I've got a long road to haul, but I'm going to take it with humor and keep things going in a positive light. I've got a tremendous amount of things going. My blog, Howard's Brain, The FTD Patient Support Group, all the other groups and forums I contribute to and the book I'm writing. I'm taking it slowly and doing what I can, knowing it's making other lives easier. Things are falling through the cracks and life is tough. Big deal. Keep on going and keep making life productive, filled with purpose and find happiness. Accept reality and don't get caught up with day to day disappointments. 

Help is filtering in from a couple of places. I've some excellent friends that are they for me, trying to help me the best way they can. I'll just keep moving forward with hope that things are going to be all right. 

Howard

The Double Edge Sword of FTD

Trying to negotiate life with a broken mind isn't easy. Yesterday I was sitting across from a friend who commented she couldn't see anything different between the way I'm now to the way I was last year. That's the double edge sword of FTD.

If you sit across from me and have a beer or a coffee you'll never realize that your talking to a person with a severe neurological disease. I was thinking of wearing a sign on my chest that says, "FTD Here" but realized people would ask me if I deliver flowers. 

The FTD double edge sword applies to patients and caregivers. Some patients can be aware there is something wrong with there brain and life and no one else gets it. Caregivers can say there's something wrong with my loved one and all the caregivers friends might think the caregiver is crazy and the real FTD'er is fine. Of course it gets more complicated because most FTD patients aren't aware there's anything is wrong with them. There are two reasons this might happen. One is that FTD effects them organically and there not aware there's anything wrong with them. Doesn't matter what behavior they exhibit. There unaware that  there's anything wrong with them no matter how bizarre there behavior. In the beginning stages it's common for a FTD patient to be in a doctors office and have the doctor convinced there's nothing wrong with them while the caregiver wants to pull there hair out. Caregivers, if you have any comments about your loved one being unaware a comment below would be appreciated. Then there are the less common cases like me. Patients with FTD that, "are aware that we're unaware" whats going on with us. We know and have accepted that we have FTD, but are forever baffled by our behavior, thinking disruptions etc. We know we're slowly losing our minds and go through an incredible struggle to be aware and control what we're doing and keep our lives together. 

Physically, I feel the same same as I did last year with the addition of 40 pounds. What's more difficult this year over last? Absolutely nothing unless I really think about it. That's what I told my friend Sheila.   Yes, my behavioral incidents seemed to have picked up a bit, but even though it can get a bit ugly there have been no major incidents. Sheila asked if I handed needed to hand out my awareness cards when things happen. The truth is I've only handed out one awareness card and that was over a year ago. Someone told me my behavior issues more resemble that of a "grumpy old man". Great, I'd rather be an FTD'er than Ebenezer Scrooge. 

It's become very difficult for me to follow up on things and keep track of projects, paperwork etc. I used to be extremely organized and now it is impossible to multitask or get through just basic day to day tasks. One year ago ago it was easy to toggle between my blog, filming and the various online support groups I belong to. Now, it is hard for me to do anything for more that a minute without being distracted. Settling in on writing this blog is taking extreme self control and discipline to keep my mind from wandering off. It's now 8:01am and by 9:30am I will be home exhausted for the day. Today is also God's Love We Deliver, delivery day. GLWD has made a big difference in my life. I can't tell you how much there charity food deliveries have made my life easier. They are true saviors and if someone is looking for a charity to donate to AFTD and GLWD are on the top of my list.

Thinking things through and planning things out are so difficult. Amazing how even while writing this I find myself somewhere else after a sentence of two. 

Last week was a tough week for me. Having my lawyer put the ice on the case was difficult. I'm lucky to have concerned people around me to help me put together a plan together. it just gets so difficult because there are so many ideas bing floated. 

I'm doing fine with a roof over my head and food on my table. 

This will be a short, not to detailed blog. Last week was a rough week and there was a lot of concern out there. I want everyone to know I'm weathering the storm and forging forward.

I want to thank everyone for your support out there. Your letters, kind words, and love you've shown me help me immensely.

Howard Glick

FTD Wanderer of NYC

Hopes Fading Away

In life we have hope, faith and reality. We try to make some of these tangible, even if there as close as a distant star.

I've accepted my diagnosis of FTD a long time ago. My life has been altered and in order to continue on I needed to make subtle differences in my life. I've done the best I could.

One thing I hadn't given up hope for was having my long term disability from Unum reinstated. In my heart I felt that right would prevail and sooner of later it would be reinstated. It is proven medical fact that I became symptomatic with FTD while I was employed and my company was paying premiums for my disability policy. It's been proven that my bipolar diagnosis was erroneous and that the medical community of Seattle just wasn't familiar with the rare disease called FTD.

Would having my disability reinstated make life altering changes that would have me sitting at $50,000 lunch fundraisers with Mitt Romney. No, but it would've made my life easier. I'd be able to see my teenage children more and help contribute to there lives and education. I'd be able to have someone come in and help me a bit with cleaning and cooking. Take a vacation and have some money for clothes, vacation etc. My dream of possibly visiting Israel again in this lifetime is now gone. Most of all I wouldn't be a charity case. I live in NYC where life isn't cheap and with SSDI I'm only making it with help from friends and others of you out there. I've been fiercely independent all my life and have been there for others, never needing help. I've never have given up that hope of financial independence thinking something could get me out of this FTD laden hole. I always had secreted in the back of my mind that the 6 Billion Dollar company Unum would come through when realizing I wasn't disabled from a broken leg and by no fault of my own did not get the appeal paperwork in on time.

My lawyer contacted me 2 nights ago to let me know he wouldn't be filing. I've also spoken to other lawyers who have also told me they didn't think the case was worthy of taking on. The law is the law and since my appeal was not tendered in time because of the misdiagnosis, there is no case. Fairness, justice, right and wrong have nothing to do with it. If this was a criminal case DNA would have it reversed, but it's not.

Okay, now it's time to move on and face my current reality. I'm quickly becoming a charity case. Just writing that sickens me. There is no question that things are getting more difficult as time goes on. I can no longer plan things at all or multi-task. Getting just about anything done is extremely difficult. Every day is a different smorgasbord of FTD symptoms to deal with.  I look at the two years since I left the hospital after being diagnosed and told to make my "end of life" plans. Well, I still don't have a will, medical proxy or any type of plan for the future. I have meaningful loving people who care, show up and disappear just as quick. People have there own lives to live. I can't afford to hire anyone to help me and I have no caregiver, so I fall into the category of people will help me when they can.

Guess I look in pretty rough shape. The super of my building saw me in the supermarket and came up to the cashier and insisted on paying my bill. I told him I have money, but he was just being extremely nice. I was born and raised in NYC. I enjoy living in NYC now and I fully intend to stay here. People do know me in the neighborhood I live in and I get a measure of support. Many know I'm ill with FTD and have a bit of patience with me or help me. Sometimes my behavior is out of control. I was at the dental clinic on Tuesday and this toddler was screaming and yelling in happiness and wouldn't stop. The mother made no effort to keep him at all quiet and instead kept playing with him. Finally I shouted would you please shut that f ing kid up. This is a doctors office, not a playground. Of course, it was now all eyes on asshole Howard time. What can I say, "shit happens".

Lately, I've had many people that know me telling me I can no longer afford to stay in NYC because of my financial situation as well as my medical condition. Life has been becoming incredibly difficult and I'm having difficulty.  People have been telling me I need to move to assisted living, to a family house where people can look after me and some have suggested a group home. I've been told to seriously start considering Seattle, Colorado, Florida or other places.

I'm going to be very clear in this. I can barely afford to be in NYC, but I can't afford to be anywhere else. This is the only place where I can have any type of life. My behavioral issues anywhere else will have me wind up in police station or and institution. I'm getting outside help now so I'm okay and if that changes so be it. Besides I'm not ready for "Dress up Howard holiday's" yet.

Yes, I continue to get squeezed and more services continue to be reduced or cut. This year not only was my food stamps reduced twice, it was finally cancelled. Home health aide gone, Medicaid cancelled. Other services gone as well. Yesterday I was informed my extra-Medicare help on pharmaceuticals is being cancelled. Guess that means less pills I have to take.

We are all masters of our own fate. I fully accept that my life is not only rough now, but is going to get much rougher. So what, it's my life and I'm going to keep it going my way. I'm not asking anyone for financial help, all I'm asking is to support me in my decision in keeping the quality of life I have. I'm not giving it up and anyone that suggests me moving again,  is not going to get a pleasant response.

I've had to adjust and live a different quality of life to accommodate my sidekick FTD. I have a decent life, everything considered. Of course I always had hope my quality of life would improve. Now, that hope is gone, but my reality isn't bad. I'm going to keep on typing and get back to filming and show what happens to a life stricken by FTD. I'm going to continue my work to help those in the FTD world and will not waiver until there is nothing left.

Being alone with deteriorating health and a declining financial situation  is a recipe for disaster. In life, not every story has a happy ending.

So, am I in bad shape. No, it's another day and I'm at Starbucks kicking ass. Universe, bring all the bullshit you have to offer my way and what you'll find is I'm still not going to give up. In fact, I'm more resolved than ever to keep being productive and live a decent life with purpose and happiness.

Howard

Need Your Help

Hi Everyone,

Chase Bank is giving donating 5 million dollars to different charitable organizations. AFTD is on the list.  There are 5 days left to "Get Out the Vote" for AFTD in Chase's Community Giving Grant Contest. Please click the link below and use your vote for AFTD! 

This is through Facebook and you need to be a Facebook member.  All you need to do is Click. No registration, no fuss, no mess. Fast, easy and free. 
Just votes, no money.

We need to be in the top 196 organizations to move on. Our voices need to be heard and we need you to vote. AFTD does so much to help caregivers, patients and researchers. Please vote to help them get funds for our cause.

When your done voting, please share this link. FTD is a rare disease so for us to get the necessary votes we need everyone to go above and beyond and share this. 

Please Vote then Share on Facebook 

(Click link)

Facebook chase community giving/charity

Lets win this thing and move towards a cure.

Howard

New Trial for FTD Drug Announced

Announcement for new clinical trial for a drug which will stop the progression of bvFTD.

"If successful, this will be the first investigational drug that is able to arrest the progression of this disease."

(Click link below to go announcement)

news-releases/phase-3-clinical-trial-begins

Patients and caregivers are invited to sign up for Clinical Trial and study updates as more news is available at:

(Click link below to sign up)

http://www.PicksDementiaStudy.info

Please note, in many countries outside the United States  FTD is still known as Pick's Disease. FTD or Pick's disease is named after Arnold Pick, a psychiatrist who first discovered the disease in 1892.

Since I've been diagnosed 2 years ago in NYC, I've watched the name changed and squabbled over from: 

Pick's to: 

Frontotemporal Dementia (FTD) to:

Frontotemporal Degeneration to(FTD):

Frontotemporal Lobar Degeneration(FTLD):

Personally I think some people have to much time on there hands and like to bicker over language. Then again, who am I. 
Just a FTD'ed Demented Degenerate :-)


Frontotemporal Disorders

The specific subtypes of frontotemporal degeneration are:

* Behavioral Variant FTD

* Nonfluent/agrammatic variant primary progressive

* Semantic variant primary progressive aphasia

* Logopenic variant primary progressive aphasia

* Corticobasal syndrome or degeneration

* FTD/Motor neuron disease

* Progressive supranuclear palsy

For information on these FTD subtypes visit:

AFTD - Association for Frontotemporal Degeneration. Below is a direct link to the disorder page.

http://www.theaftd.org/frontotemporal-degeneration/disorders

Howard

FTD: Hate me, Love me

Had a visitor in from Tampa last week. Lady D has FTD and was coming in for medical tests and a visit with me. We met and are friends through the FTD patient support group I started. Lady D is a well accomplished Southern Belle and successful business lady, having been a senior VP for Wells Fargo. We spent the first half of the day after Lady D arrived at Mt. Sinai Hospital. That evening we had a wonderful Italian dinner and then went to see the Broadway show Spiderman. 

The next day Lady D took me out to Keens Chophouse. This is where Babe Ruth and Teddy Roosevelt used to go for steaks. Lady D asked the waiter to bring me one of there finest steaks. Yes, I finished it. It was such a nice change from "Meals on Wheels" type meals and Pizza. Diana and I had fun in NY. I thank Lady D. for her incredible generosity and friendship. 

I had only one incident while Lady D. was here. While walking in the street some smoke hit me and I jumped all over the guy saying out loud, "Your killing me and yourself smoking those cancer sticks". He fired back something I don't remember now. Lady D. quickly told me she was worried I was going to get killed. She suggested I say, "Have a nice day". I explained that I couldn't help myself. It was an impulsive aggressive reaction that I couldn't control. Plus, if I went around NYC shouting at people, "Have a nice day". That would surely get me killed. I work very hard at monitoring some of the FTD symptoms. I rarely make sexual jokes, say inappropriate sexual remarks or make a pass at anything that moves. I cut my cursing down to a bare minimum and curse less than the average New Yorker. I am proud of these accomplishments. I told Lady D. I've picked my battles and if I try to monitor and control everything I will totally burn out. She understood. 

On the way home we passed the same smoker and he waved at me. Lady D looked at me. I explained that I've leveled my FTD smoking tirade on him many a time, while he's stood smoking and leaning on that mailbox. He's used to me. I'm a neighborhood institution.

Hate me, love me.

To read more about Lady D. She was featured in the Forbes FTD Patient Series:

Diana – The Disease That Stole My Career: Inside The Mind Of Frontotemporal Degeneration

Here is an FTD Symptom Chart. This was eerily reflective of me. According to the chart  I'm at mid-stage now. I've read enough now to also know that each person is on their own path and symptoms from different stages can happen at any time. Even though my symptoms say I'm at mid-stage, I will consider myself in the early stage till I decide I'm not. If I was going to believe everything I read on FTD, I'd be dead instead of enjoying steak and typing. Mindset and attitude is so important when your sick with any disease. 

On the chart shopping/meal prep jump out at me. I have my stable "God's Love we Deliver" meal at lunch but you'll find me wandering the streets of the neighborhood just about 7 nights a week in almost a crisis mode. It's the same unnerving experience every night. FTD is a bizarre disease and there's no easy answer. FTD defies logic and "make sense" ideas need not apply. 

FTD is the Unexplainable and you can't explain the Unexplainable.

Someone wrote to me recently and told me she thinks she's ready for a nursing home. She's younger than me and just can't take all the "horror" of this disease. If someone would chronicalize my thoughts and actions for a week, I'd be on my way to Switzerland to be euthanized out of mercy. 

Sometimes awareness with FTD is merciless. 

On the flip side my life is the ultimate adventure.  I am so happy to be alive and to be fighting on. In the 2 years since being diagnosed, I've met and had contact with some of the finest people humanity has to offer. 

I've found that doing work to help others is by far the best gift you can give the human race and yourself. 

Break::::: People are very, very kind. A woman who I didn't recognize just came up to me and handed me a Starbucks gift certificate. Her name is Teresa and she told me we've talked before. Thank you so much Teresa if your reading this. It's deeply appreciated.

Well it's 11:40am and this FTD'er is fried. I'm heading home. 

Howard

Future Treatments

Many people ask me what treatment I'm getting for FTD or future treatments I'll be getting.


From this patients point of view. I have a closetful of MRI, SPECT and PET scans. I have thousands of page of doctors notes. Besides scans, I've had ECT (shocks), VNS (implant in the chest with wire to my brain), spinal taps and every medication that doctors can trial and error on a living human. There is no FDA approved medication for FTD. Some people need them for behavioral reasons which is totally understandable. Unfortunately, all meds are trial and error, hit and miss. The more you take, the faster the demise of your brain.  I will not be taking any meds besides Namenda. I'm not sure if that even works. 

I started taking Melatonin for insomnia about 2 months ago and just took myself off it. 

Meds might give me peace of mind, but they'll be taking away from my quality of a real life.

I have a firm diagnosis of FTD.  Incurable, unstoppable and untreatable. 

I see my neurologist once a year because I like her and maybe if there's a magic cure on the horizon, I want to be on the list. 

I will be donating my brain to science.

As far as being scanned, poked, prodded or experimented with. Those days are over. Waste of time, money and needless anxiety. 

The only reason for anymore medical exams is if my Long Term Disability company Unum decided to reinstate my disability. Insurance companies want to make sure you can't be cured or have a miracle. At least till your in the grave.

One piece of positive news is my lawyer is making some headway in my disability case against Unum. There's a long way to go, but there is hope. I'll take any hope anyone can give and run with it for miles.

Howard