Monday, October 29, 2012

FTD and Hurricane Sandy


Last night a friend was visiting and warned that Hurricane Sandy might whip though my window and into my apartment. She asked what I would do. I told her if it did I'd open the front door and let it out.


Me and Sandy this morning

 Management and Prognosis  *AFTD*

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. It does, however, predispose patients to serious complications such as pneumonia, infection, or injury from a fall. The most common cause of death is pneumonia.



I'll take 20+ years. Right now I've had FTD for about 8 or 9 years and though I'm rough around the edges, I'm planning on going for the record. I'm not going anywhere.

There is so much misinformation and outdated information on FTD. Brain imaging is an advancing science and we're getting earlier detection all the time. Many more people who were diagnosed with mental illness are now finding out they have FTD earlier. It took me 6 years of misdiagnosis to get a properly diagnosed with bvFTD. I can't tell you how many people I receive letters from that are told from there doctors they have 2-4 years left to live. The stress this puts on is unimaginable. Yes, there are many people that die quickly, but there are many that live many years and they should not have the death whammy put on them. 

When I was first diagnosed in June 2010 and told to make my "end of life" plans, I scoured the internet and everything talked about imminent death. 2-10 average 5 years till death. In 2011 that was changed to 2-10 with people living up to 17 years. Now it's 2 to over 20 years with an average of 8 years. The best things that happened to me after being diagnosed was my favorite neurologist, Dr. Blatt banning me from reading about FTD on the internet. It's was so depressing. People with any severe illness need to find a way to go on and make the most of there lives. You need to put your focus and energy on living and not dying. You put it on dying and not only will you be miserable and depressed,  you'll go faster. Sometimes you just got to fight to live.

Had some sheer panic this week. My ex-partner and angel in my corner wrote to me on Friday that she was laid off and could no longer help me financially. We split up about two and a half years ago and she's been helping me each month. She has been absolutely wonderful. I knew this day would come sooner or later, but now it was here... My lease is up in my apartment in January and I'm thinking I have to move. Where? I can't afford NYC. Arizona maybe. Where can I go that I will fit in and not get in trouble fast. The people and stores here in my NY neighborhood know and tolerate me.  I'm totally panicking. A close friend of mine told me I need to put a team together of my friends. Then Sharon Denny from AFTD called and suggested the same thing and she could arrange a conference call with my friends on the team and we could strategize. 

Sheer panic. Thoughts of life really being over. No place to go and thought of being forcibly placed in a nursing home or institution cloud my mind as well as suicidal thoughts. Of course I wouldn't do that, but it enters my mind. As my friend David told me, "Howard, your good at a lot of things, but you failed miserably at your suicide attempt so don't bother trying it again. Your suck at it." The next day it got back to me through my power of attorney and friend Marc that he had a reserve for me, so I'm okay for a while. Of course I knew that, but forgot or was just totally overwhelmed by panic and stress. Now it's a day later and I've had a couple of outbursts and have still not settled down. One little outburst had me throw a 24x36 out my window last night. It went down about 15 stories. Don't worry, nothing down there but a fenced in wooded lot. Might've killed a rat. 


I left a restaurant with a friend and when we got outside she slapped me in the face. It wasn't a hard slap, but it was harder than a playful slap. She told me it was because of what I said to the waiter. As we were leaving the waiter asked if we were worried about the Hurricane Sandy. I told him it would be great. Lightning, thunder, wind, trees snapping and the building shaking. Perfect atmosphere and we'd be riding it out having great sex. He laughed and my lady friend obviously wasn't amused. I understand  she was a bit upset about it and obviously right. Still, till this moment sitting here and blogging I still don't get what the big deal was. Did I really say something wrong.

Okay, lets do a poll. Leave me a message below or somewhere else whether you think Howard was inappropriate or not?

Ah, the wonderful world of FTD

Sandy is here and I hope your all keeping safe out there. I might go out streaking later.

Howard

Friday, October 26, 2012

Message from my friend Marc Turkel

Howard and I met at 5 years of age when I moved in across the hall from apartment 1B. Boyhood friends and then for all but two years of our adulthood, we've had our adventures! Now, I'm Howard's power of attorney. If you're reading this, you already know the challenges Howard has with FTD and the miraculous way he's handled these circumstances; Howard's a model of triumph over this monumental adversity with his grit, humor and honesty.  Howard and I have together stared down the hard cold facts, he doesn't have the safety net he paid for years while working as a sales executive. Unum, his disability insurance provider has withheld benefits based on a technicality. While Unum has disappeared his disability benefits, his needs don't disappear with them. Howard lives month to month and absent a breakthrough with Unum, his financial situation is not sufficient to meet his needs. If you are someone who can make a difference with a dollar or a hundred thousand of them, will you use the PayPal button on the page to make a donation? These funds go directly to a trust account which will be used to assure his future medical and living needs will be met. Your donations provide both the means to live and, peace of mind for Howard. Like all of us all, he richly deserves to live out these days with dignity. Thank you - Marc Turkel (Apartment 1E across from Howard's, 1B)
*Chase Bank has set up this PayPal account and it is perfectly safe.

FTD: The Comforting Funeral Director

Went to my first long term facility yesterday with a small band from Riverstone.  It was in a modern building off Central Park in Manhattan. It was only 12 years old and in beautiful. We were introduced to the director of admissions who was professionally dressed and attractive. She stood with tall with perfect posture and had the comforting look of a funeral director. She was pleasant, but her expression didn't change once throughout the 30 minute tour. Within a minute my stomach was churning noticing everyone was 20-30 years older than me and this chapter in my life might be coming up quickly. I quickly found out that this wouldn't work for me. I didn't qualify on the 65 age minimum, me being a mere 54. Nor were they set up for people with Dementia, never mind FTD. The dinning room was on an upper floor and had sweeping views of Central Park. Of course one of the Memory Club members asked if we could stay for lunch. The funeral director stared down at him and didn't even answer. Just gave him look with that pleasant icy stare. I could tell she was measuring my friend up for a casket.

As we wandered the hallways I started to notice something that was a bit unsettling. There were many elderly people scattered around and all of them sitting by themselves not doing anything. They weren't talking to anybody or reading, just sitting there. None looked sad nor had that dementia stare. Next month we're going to a nursing home. Nursing homes are usually where those with FTD wind up. That should be a real treat.

I received a beautiful invitation from someone in Arizona to look at there facilities. (will put in her name and organization soon within a day)  I've always loved Arizona and There educating facilities about FTD. This is crucial because FTD comes at a younger age with all sorts of behavioral issues. Quite often FTD patients wind up drugged up till they become docile. I won't talk about mistreatment, but its crucial that FTD patients have someone visit and check up on them to make sure about meds etc. I know no one in Arizona and still have good friends in NY. Plus a good friend of mine Stephen Athineous will be watching over me. No one could have a better person to look after you. God help any staff member not treating me right. Plus he'll be able to take the kids for, "dress up Howard day." Of course my friends have put together a list of people they'll dress me up as. Dorothy from the Wizard of Oz, Nixon etc. You get the picture.

On the way home my mind drifted to the Netherlands, Oregon and Switzerland. They have legal euthanasia or assisted death in those places. With FTD the end is quicker than Alzheimers, but not pleasant by any stretch of the imagination. I'll spare you the details. When I can no longer care for myself and my bodily functions stop working, I wish I could be taken to a nice quick transition facility rather a place to rot.

Received a letter last night from someone else I know with FTD asking me why I'm looking now because it's so depressing and I'm in such good shape. Yes, it is depressing and the last thing in the world I want to do is for end of life care. I do need to be responsible and take care of this planning now or it will fall on the shoulders of my friends. That simply isn't fair. FTD is one of those diseases that progresses very quickly. Though I'm hoping to be typing away here at McBucks in 20 years, there's a good chance I will need long term care within a few years, if that long. That's the nature of FTD. The average is 2-10 years, average around 5 years till death. Thought some have made it to 17 years.

I don't look forward to my demise and in the words my fellow FTD'er Julie Krueger, "I'll take 20!" after reading the pamphlet that gave FTD'er  2-5 years. "That diagnosis was a catalyst telling me to live my life to the fullest."

I'm living my life, but unfortunately getting screwed by Unum with them not paying my disability and me being alone has made everything in life so difficult. Long term is disability insurance is crucial  and is highly recommended because anyone can get stabbed in the back by a disease like FTD at anytime. I just recommend you use any insurance carrier besides sleazy Unum. 

I want to do as much and accomplish as much as I can in this life. It's not going to be easy, but I've got some good people around me to help me figure it out. Attitude and mindset are everything. I'm alone with FTD and my resolve to fight on and enjoy life continues. Yes, I have rough moments. Losing your mind slowly is no fun thing, visiting long term care facilities isn't easy. My soul is filling with the thoughts and actions of so many beautiful people who have come out of nowhere to help me piece together my life which has become fragmented. 

Jimi Hendrix is playing, "All along the Watchtower" in my headphones and I'm on my way to Columbia for a Stress Echo-Cardiograph.

Rock on baby, Rock on.

Howard



Wednesday, October 24, 2012

Controlling a Hiccup

* I want to apologize for those of you that get notified multiple times each time I publish a new blog. My database is extremely large and I've idea how to get rid of duplicates.

I live on the top floor of 6 story building. since the building is on the side of the hill adjoining a small wooded lot, it's like being 15 stories up. Needless to say I have an awesome view.

Over the last couple of months a dog has urinated 3 times in front of the elevator on my floor, leaving a big pool,  in the elevator and pooped in the lobby on the rug which of course I stepped in. There's only one dog on my floor and it's old.

Last Sunday I ran into the Superintendent and Handyman in front of my building. I told them about the a dog problem. The super told me he already knew and slipped a note under the door. The owner told him the dog had alzheimer's and arthritis. I told them the owner should just throw the dog out the window. The problem would be gone, dog relieved and city varmints would take care of the remains. The Super and Handyman laughed thinking I was kidding. The Super told me dogs owner was an elderly woman who was also sick and told the super that there's nothing wrong with what the dogs doing peeing in the hall. I told them she should throw the dog out the window and then jump herself. They laughed thinking I was joking around. I laughed with them.

I don't think they realize that I was serious. I still think it's the best solution with zero feeling about either of them. If anything it would me merciful.

The above was written a few weeks ago and it really saddens me to find myself emotionless when it comes to certain situations in life. What I said and felt is FTD. I would never have thought or felt that way a few years ago. A couple of months ago someone committed suicide in the subway and they closed the subway. My reaction in the elevator on the way up was that whoever it was could've at least jumped off the George Washington Bridge instead of making me and everyone else late. It was my routine 2 month or so trek downtown to get my haircut and this inconsiderate person through my schedule off. 

Can anyone out there control a hiccup?  FTD is similar. You can't control the uncontrollable. can't control my thoughts or my quick aggressive reactions. Now I feel worse about thinking in these terms, than the actual event. There's no medicine or therapy for this and it's only downhill from here. As FTD progresses it will keep getting worse. I don't even know when I say these things that there wrong. I'm slowly losing the concepts of the difference between right and wrong. Of course I fear the day my actions will find it necessary to have me put away. Right now I'm still in pretty good shape and I can only hope it stays this way another 10-20 years. You can't imagine the pain and isolation one feels when you do and say things that have people staring at you and making remarks all the time.  There are a few people that "get it". But there few and far between.

For those of you that don't know me personally, besides having a fight when I was 13, the closest I've become to being violent is breaking God knows how many cell phones when I was drugged up while being misdiagnosed. Turning thoughts into actions is different.

Last night I was on the phone telling someone how I would love a service dog. I do like dogs, just not annoying quacking Chiouwahways (spell check failed me) Service dogs work with FTD patients successfully and help them quite a bit. It would also be nice to have the additional company. Unfortunately, the upkeep of a dog is beyond my means.

Went to Columbia yesterday for my heart tests, unfortunately the medical gods booked the wrong test so I need to go back Friday. The pains in my chest subsided, so my cardiologist was probably right that its a muscle pull.

I've still a lot of life to live.

Now I just need to reach back and take my own advice about living with FTD/Dementia and not fall into depression. I somehow need to make some shifts/differences in my life. Whereas coming to McBucks 7 days a week around 6:30am is good to get me out of the house, that is all I do. I used to go to the support group "Memory Club" two days a week but that's ended. I usually never leave the house besides that. It's just getting to hard being around people. I spoke to a good friend the other day about me leaving the apartment in the morning and not returning till 3-4pm.

So now I have one of two choices:
1. Sit at home and not only lose my mind to FTD, but go nuts.
2. Head out into NYC each day and still lose my mind to FTD, but drive NYC nuts.

Think I'll take on NYC. I'd love to make the joke that if I get arrested, I hope I can bail myself out with food stamps. Except they cancelled my food stamps.

What is enabling me to precipitate this change. A few things have happened recently:
*I've stopped taking Namenda and no longer have those waves of extreme tiredness all day long. It's actually scary to think of how that pill had me so out of it. I feel so much better without it. I now realize staying home most of the day has had me cascading into depression. Besides the Namenda, I'm battling FTD's ability to keep you unmotivated and it's easy to sit around doing nothing.
* Keeping myself in a very tight routine has actually restricted me from breathing NYC air and living life. I'll still be coming to Starbucks each morning, but I'll be expanding my FTDness.
* I've gained close to 50 pounds in the last year and not only look like a walrus, but feel like a walrus.
* Though I've been filming more lately, I've cut back way to much and need to get on top of it. Of course I also cut back because I haven't been doing anything.
* Last but not least, the assistant manager of Starbucks threatened that I might get banned  from one of the higher up managers because of what he tells me was an unsubstantiated complaint to him.  I wrote the Starbucks District manager who addressed it. Then the same assistant jerk then went to one of my good friends, telling them he got reprimanded because of me and not only makes them uncomfortable, but tells my friend he lied to me, because he knows I'm sick and he was trying to be sensitive. That's right, threaten me with banishment and then pretend he's trying to help me. This guy can be an arrogant jerk and now was backpedaling. Hey, he knows I'm disabled with FTD and can't control myself all the time, but decided to be cruel by saying I might get banned.  Now he's covering his butt by saying he lied because he's being sensitive. For those that have been following the blog, this is the same guy that in the past when asked if he could lower the music which was blasting at 7am, responded with, "some people like it loud" and refused to lower it.  After numerous complaints from others, management moved the speaker. This jerk has problems with others besides me. If I hear it, so sooner or later his management will if he keeps up. This is the first time I've complained about a Starbucks employee, in fact I wrote a letter about a month ago praising one of the newer employees.

This really effected me. I may not have shown if on the outside, but it caused me much angst. Starbucks has been my staple of keeping me in a routine and out of the house each morning. No matter what happens, I know I'm out the door almost 7 days a week to Starbucks. I also have many friends there.  Now it's being threatened. Anyone familiar with FTD or any type of Dementia knows how crucial  keeping a routine is. Now, that's being threatened. As I said earlier, I did get a professional response from the district manager, whose a familiar upstanding individual like all of us are used to from Starbucks. This quelled my fear.

Now I'm home waiting for GLWD -  "God's Love We Deliver". My aluminum tray food savior. With FTD, every day is an incredibly difficult fight to keep pushing yourself.  I'm determined to keep pushing and keep making a life for myself for as long as possible.  Right now I'm FTD tired and burnt out.  Whatever I do from now till tomorrow will be easy going. I'll end this and publish.

One last thought. Because of my massive Walrus-ized body, I decided to go on a blubber attack with the Atkins Diet. I went to Costco a few days ago and picked up the appropriate food. A friend whose a neuroscientist then told me she did a paper on how Atkins is bad for the brain and heart. She told me I should check with my doctor. I asked my cardiologist who immediately told me it's unhealthy and bad for my heart. Okay, so FTD Howard just bought all this new food and tossed out a bit of the old. I'm all ready to go with a massive, demassifying effort and everyone is telling me I'm an idiot. Well, I chugging forward with Atkins. I've lost weight before and I know how to focus on it. I will modify it and eat less red meat and fat. It's a familiar diet for me and I will lose the weight and then try to do something more sensible.  Right now I'm 236 pounds. I'm determined to lose the weight and get as healthy as I can while I lose my mind :-)

Howard

Sunday, October 21, 2012

Life with FTD

When I was first diagnosed with FTD, the Alzheimer's Association gave me a grant to Riverstone's Memory Club which was a support group for those with early onset dementia. The staff and club members of Memory Club taught me how to live with Dementia and I'll be forever grateful. There's no way that I could've accomplished what I have without Memory Club's support and help.

Memory Club averaged 8-13 people and met twice weekly. I might have been the only one with FTD, but it became quickly apparent we all shared similar difficulties. I was very lucky to be in a support group for patients. They are very limited, compared to the amount of support groups and programs for caregivers. There are no support groups for just FTD patients. There is one  Online FTD Patient Only Support Group.

Mainly because of economics, the numbers of club members shrank to just 1-2. City and Government funds were slashed and with the economy people couldn't afford to go. I was lucky enough to have grants from both the Alzheimer's Assoc. and then AFTD - The Association for Frontotemporal Degeneration. In the beginning of the summer, I stopped attending Memory Club. It just wasn't the same without there being a large amount of people engaged in our discussions.

The last few weeks I've been having chest pains, so I've been panicking a bit more about getting  my "end of life" plans together in this lifetime. While at Memory Club I picked up a piece of paper and scribbled on a piece of paper that I leave all my earthly possessions to my children. Had two of the staff witness and sign it. Alas, it's done. I need to do a proper will, but this will do for the moment.

I spoke with the Director of Memory Club, Carmen Nunez about helping me with my long term planning and she was more than helpful. She already has arranged for  a tour of a "Memory Care Center" for Thursday. I fully expect to leave there in a state of shock. I'll probably be about 20-30 years younger than most people there. Such is the case for those with FTD. We also present special challenges for long term facilities because of our energy and behavioral issues. I recently heard from someone who was worried because her husband was to active so they had to medicate him. He was just trying to be helpful and wasn't destructive. Just a pain in the butt like me. Anyway, they needed to medicate him and the medications weren't working. They told the poor wife If they couldn't get her husband calmed down they would have to transfer him to a "secure mental facility". I feel so bad for her and her husband who has FTD and no clue to what's going on.  Of course that makes me think of my own future. Things like that are fairly common for those with FTD. Hopefully I won't be checking into one of those facilities for 20-30 years. Yes, things are a bit rough around the edges, but I'm nowhere near ready to give up my independence. Carmen will also be helping me with a living well etc.

As I said earlier I've been having chest pains for weeks. Considering I had a heart attack and stents put in 10 months ago this wasn't a good sign. One night the chest pains even woke me. Each night when I went to sleep I wasn't sure if I was going to wake up in the morning. My thoughts would jump to my children and some close friends. I knew I had to get some sort of will done. I'm 54 and have had 8-9 really bad years. Things have been continuously getting worse and there's no light at the end of my tunnel. Not every book has to have a cheerful ending. Wish mine would, but that's not the hand I've been dealt. Those are my thoughts for the future. Do I wish for death? No, but I'm hoping for a quick exit when I know longer can take care of myself. I love the work I'm doing on this blog, film, support groups and book but I need to have a bit more going in my personal life. I accept what is, is. But that doesn't mean I have be happy about needing to ask people and apply for grants, just so I can see my children who live in Seattle. I still don't know if I'll be seeing my children Christmas break. Then of course my mind goes into a cycle of hating Unum for getting off on a technicality from paying my disability. I'm not looking for pity, I'm just venting here in Starbucks where I'm probably on Double Secret Probation with the possibility of getting banned. It just feels like I'm not part of society any more. Sort of feels like i'm an outsider looking in.

There's no way to describe slowly losing your mind. To look normal, but to have your thought process corrupt and actions off is like slow torture. Things happen and people look at you with a, "What's the matter with you stare". It gets tiresome for even me to explain FTD to people all the time. Then after a major incident you dhole up in your apartment for days, just not want to go through it. There's no pain in losing your mind. If I wasn't self aware, I wouldn't even know I was sick. If I had a strict routine and didn't deviate at all, each day would flow into next. Time would stand still and I'd be one of the those FTD patients in a doctors office who at the end of the session the doc would think there was absolutely nothing wrong with me and the stressed out caregiver was sick patient. In fact, when I was in my cardiologists office he was explaining something simple to me and I told him I didn't understand. He said, "Of course you do". I just smiled. You can't fight "Wall Street" all the time. Later in the morning I had a test done downstairs and couldn't find my way back to his office. Luckily I ran into my Doc who pointed the way and explained how to get back. 10 minutes later I was still wandering the hallways.

My Cardiologist was concerned. He doesn't think my chest pain is heart related, but I'll have more tests done on Monday. Dr. Merab was very concerned that I'd gained around 46 pounds. It's not my fault the pizza is so good, cheap and a no brainer when I'm hungry and can't make a decision.  One quick call, "Small Pizza Well Done". "Right Boss, 6F" and it's at my door 25 minutes later. Don't even have to give my name or address. They know me and call me 6F because that's my apartment number.

In the past I've successfully lost weight on the Atkins diet. Starting Monday Atkins it is. Though I'm sort of tired of eating out of aluminum charity trays 7 days a week, I'm extremely grateful for the food and services that God's Love We Deliver comes with. The food is actually excellent and I'll pick it apart to keep my protein up.

My life with FTD is different. Dreams, hopes that we all have in life get shattered. You need to get accustomed to a whole new set of rules. I might bitch and moan a bit, but in my heart I know things could be a lot worse, my concern is that they will. Just hard to see any light at the end of the tunnel.

Howard


Monday, October 15, 2012

The Titanic


It's been 2 and a half weeks since I stopped taking Namenda. I sort of feel normal now and have been relieved of the extreme tiredness that I could never get accustomed to. Yes, I'm tired after my few hours at McBucks. It's an FTD occupational habit. But those ridiculous waves of tiredness are gone. There are absolutely no other differences that I feel or others can see.

Had the one of the Starbucks employees pull me aside for a bit of a talk. Told me an anonymous person called in a complaint about me and that I needed to be concerned about getting banned from Starbucks. We're in NYC and my behavioral issues are nothing compared to the junkies in the bathrooms and some others that are cursing out customers, punching, yelling etc. I wrote to the District Manager of Starbucks because I think it was a bunch of crap and harassment. He wrote me back immediately apologizing and told me he is going to find out what's going on. I'll update this situation soon with more details.


Feel like I'm on the Titanic after it hit the iceberg. Passengers were starting to get concerned only after they started passing out life preservers. I feel just as unprepared for what I'm facing. I met with the director of Memory Club this week and we spoke about Long Term Care and my other "end of life" plans. She offered to help me with these because it seems no matter what I try, nothing gets done. The only thing I really care about is putting a will together. I have a truly disgusting criminal in the family that will attempt to steal everything if it's not clearly laid out.  The director of Memory said she is going to set up a tour of "Memory Facility" where they are used to dealing with those with Dementia's. Only problem is there used to Alzheimer's and not active FTD. I know someone here in one of those with FTD. He's in his fifties and just paces around stoned out on meds. Most everyone else there is 20-30 years older. I can only hope my heart goes out before I reach that point. Sorry, but I don't believe in living just for livings sake. There is a certain quality of life we all want in good health and in bad health. Luckily I have enough health issues where something should resolve itself.

As much as I try and keep this blog upbeat, it is more important to keep honest to myself and the people that are reading it. I would love to write how much I have to look forward to, but right now there isn't much. I still haven't even figured out how I'm going to see my kids this winter break.

One good friend said to me the other day how I have no life, except everything that's wrapped up in my work in FTD world. Yes, I agreed with her. I also explained that my finances are being cut severely and where I want for absolutely nothing, I do absolutely nothing except get coffee from Starbucks because I can't afford to do anything. I also can't figure out what I have and what I can spend so I spend nothing except for basics. Much of this is choices as well. I cut back in many areas for the month so I could send my daughter a birthday present. We all have choices in life. I choose to stay in Manhattan where it's more expensive so I pay the price. It would've been nice if all the social services weren't cut around me, but that's life. I'm not sure how many more rises in expenses and cutbacks I can take. I'm hoping not to be forced out.

I've been filming more lately and I feel good about that. I hope one day "Howard's Brain" will be made and people will understand the ugly world of FTD.

Howard

Tuesday, October 9, 2012

FTD - The Stranger that's me


Message from Marc Turkel, 
Howard and I met at 5 years of age when I moved in across the hall from apartment 1B. Boyhood friends and then for all but two years of our adulthood, we've had our adventures! Now, I'm Howard's power of attorney. If you're reading this, you already know the challenges Howard has with FTD and the miraculous way he's handled these circumstances; Howard's a model of triumph over this monumental adversity with his grit, humor and honesty.  Howard and I have together stared down the hard cold facts, he doesn't have the safety net he paid for years while working as a sales executive. Unum, his disability insurance provider has withheld benefits based on a technicality. While Unum has disappeared his disability benefits, his needs don't disappear with them. Howard lives month to month and absent a breakthrough with Unum, his financial situation is not sufficient to meet his needs. If you are someone who can make a difference with a dollar or a hundred thousand of them, will you use the PayPal button on the page to make a donation? These funds go directly to a trust account which will be used to assure his future medical and living needs will be met. Your donations provide both the means to live and, peace of mind for Howard. Like all of us all, he richly deserves to live out these days with dignity. Thank you - Marc Turkel (Apartment 1E across from Howard's, 1B)  

Doing better without Namenda. Starting to piss off people again. Was outside filming me just now and some police were getting out of a unmarked police car, going into the supermarket. Of course I asked why they didn't pay the meter since they were off duty. If looks could kill, I just died a Bonnie and Clyde death. I forgot I was filming me and I guess they thought I was filming them and being smug. Nothing of the sort. Forgot I had the camera in hand and just FTD'ed it. Five minutes later pissed off a friend of mine with the camera. She hates being filmed and has told me a million times not to film her. So what do I do? Exuberantly film her and her toddler son. Now I'm safe at home watching college football. Two incidents in a short amount of time is enough for me.

The above incidents happened on Saturday. I went home and spent the next two days watching football and barely went out except for my usual stint at McBucks. This is normal for me. I really don't spend that much time in public. I'm sort of in a damned if I do, damned if I don't life. I don't want to isolate myself,  so I'm trying to get out more. The only problem is when I'm outside I can't help tripping over my own mouth. On Sunday I finally got someone to help me clean the apartment. I didn't want to be in the apartment while she was cleaning so I went out.  Had coffee at cafe Bunni and hung out until it turned into a daycare for screaming infants, kids and irate parents. Then I sat on a random bench in the street where I prothlesized FTD to a young couple. It started rain so we all left. I then realized I had no where to go.  The apartment was being cleaned and I didn't want to interfere and I didn't want to spend money in a restaurant. 


So I hung out in the rain under an awning at the supermarket that Sandwich boy works at. 


It was then I was thinking and became painfully aware again what my life has become and how screwed up it is. A day earlier I had a cop glaring at me wishing I was target practice. 5 minutes later a good friend was pissed off at me for something that she told me not to do time and time again. Then later Saturday night I went out with a friend and got her so angry our date ended after less than an hour after we met. I was also contacted by someone I made plans with and stood him up by forgetting.


As I stood under the awning half avoiding the rain I started crying. It makes interesting reading when I write about angry cops, sandwich boy, angry friends etc., but living a life where all day long your in a war leaving a casualty list because you aren't aware of what your doing is rough. This is my life and it is so screwed up. Funny thing, if I wasn't staying out of the rain under "Franks" awning, my mind would never have gone in this direction. Now I was distraught. When I think of who I am today, I'm a stranger to myself. There is no escape or respite from myself. 

How much longer can I go on without running into real trouble? When is my luck going to run out and I'm going to wind up in a police station or an institution.


A friend recently asked me if I exaggerated the stories in my blog. I laughed because the reverse is actually true. I actually tone down my stories because I'm nervous somebody reading my blog will turn me in for being dangerous or incompetent. I told my friend of just one incident and the reaction was "Yeah that's bad" with an understanding and worried look. I also explained my preventative measure so it wouldn't happen again. My life is so out of my control and it's only going to get worse. FTD is progressive and there's no magic pill to take to make it all better.


Later in the afternoon I received a text from a friend asking if she should get ready to join the ranks of all the people I know longer associate with.  We went back and forth with me being defensive, saying there were good reasons I wasn't in touch with those people. But she was right. All the years I lived in Seattle I only still had contact with a friend I knew from NYC. Everyone else gone. Many of the people here in NYC who I've known I rarely talk to. 


The friends I have are the best in the world. I'm lucky for that.

My life long friend and Power of Attorney Marc Turkel set up a Power of Attorney bank account that will help me. This has been discussed for a while now. Last week I felt totally distraught over it being set up. I feel like a beggar. Many have told me that accepting help is not begging, but I've always worked hard all my life and have never needed to ask for anything. The account is set up so I'll be able to stay with my very modest lifestyle in NYC and continue my advocacy for FTD. I've come to terms there's no way I'll survive outside NYC and I don't want to leave. I've also taken many hits over the last year with many social services being cancelled. My finances without help are upside down. The hope is it will grow and help me with an assisted living facility or long term care when that need arrises. Just writing that makes me anxious. 

I'm so uncomfortable writing that I need financial help. I know it's not true but in many ways I can't tell if I'm a failure or unlucky. Unum getting out of paying me my long term benefits on technicality was a big hit. If anyone wants to send a large contribution by check or directly into the account you can contact me through the blog and I'll send you Marc Turkel's address or the Chase Account number to put it in.

When I set up my will. I'm planning to put in a provision that in the case of my demise any donated funds left in this account will be donated to AFTD.

*A Namenda update - I've felt absolutely no negative side effects or changes since I've been off Namenda. The only difference is I no longer suffer from bouts of extreme tiredness during the day.

Thank you,

Howard



Saturday, October 6, 2012

Namenda 7 days off

Some good news to report after having been totally off Namenda for about 7 days. I'm starting to have positive results. The last couple of days I've not felt as lethargic as I've been for years.  During the day there was always that feeling like someone was having a tug of war with my brain and pulling me down. I was constantly tired with waves of exhaustion and spent most days laying down in bed. It's almost a feeling like when your given medicine right before anesthesia for surgery and your brain has that sinking feeling as your counting down from 10. I'm still tired during the day, but less. I'm hoping this pattern continues. I'm not noticing any other side effects in memory or thunking :-)

All drugs have side effects and extreme tiredness is one of Namenda's. A few weeks ago I was thinking of taking the chemical route. Many people who have FTD were suggesting I take more medicines to give me a better life. Considering I used to be on up to 17 pills while being misdiagnosed, I wasn't looking forward to starting the whole chemical/drug dependency thing again. I also don't have a psychiatrist and can't afford one or the strict monitoring that comes with being an FTD patient taking a pharmaceutical cocktail. Never mind the cost of the drugs. The drug adderal (amphetamine) is a popular pick me up for day use in the FTD community. I am so tired of having dreary days because I'm dragging that I was seriously thinking this route. 

 Pills for FTD are all trial and error.  There's no pill or FDA approved medication for FTD so it comes down to lets try this anti-seizure pill and mix it with an anti-depressant and see what happens. Go back and see the psych next month for an evaluation and medication adjustment. Then it's how do we treat the side effects of these pills. By adding another pill, switch meds or downsize. Of course since FTD is uncooperative by being progressive and the brain keeps changing by shrinking, no combination ever works for long. As far as making a drug just for FTD, well FTD is rare so there's not much return on investment for a new drug being made. Easier to piggyback off other drugs for other diseases and use existing patients as guinea pigs.

Recents studies on Namenda which I wrote about in a previous blog concluded that Namenda is ineffective and rarely works. Now, the million dollar question was whether my extreme tiredness was due to FTD or Namenda?
If it was due to FTD then adderal or a similar drug would help me function better during the day. If my tiredness was a side effect of Namenda, then I would be taking adderal (speed) to combat a side effect of a seemingly useless drug. 


Am I being fair to Namenda? We all know our bodies and I really feel it has been doing nothing to help with my thinking and memory. Most, not all that I've heard from (close to 100 people) tend to agree it is a worthless for profit only drug that does nothing but have side effects and help the profits for Forrest Pharmaceutical. It might work for other conditions besides FTD, but it's been proven it's rarely effective for FTD. It's hard to believe and beyond my comprehension that a pharmaceutical might push a drug for profit only. Nah, who could be so greedy. (pharmaceutical companies :-))

Yesterday afternoon about 3pm I was up and walking around and ran into people that know me. Many were surprised to see me out in mid-afternoon. One person said to me after about 10 minutes she was shocked and happy to see me in an FTD rant. She knows my behavior patterns and told me I'm usually dragging anytime after 10-11am. 

Yes, that's what NYC needs. Howard Glick back to 18 hours a day of FTD rant. If I had a caregiver they probably sneak me doses of Namenda or Seroquel.

Anyway, it's Saturday morning and my energy level continues to improve and the Namenda induced lethargy is going away. Filmed about 30 minutes this morning for "Howard's Brain".


Howard Glick and eating crow.

If for any reason my conditions worsens or I see any negative change because I'm off Namenda, I will immediately blog about it. I have zero ego when it comes to saying I'm wrong and giving accurate details of the truth. 

At this point I'm one week off Namenda and there are only positives, no negative.

Howard

Wednesday, October 3, 2012

Struggling and Acceptance


Read a newspaper article about Julie Krueger, an FTD patient a few days ago in a Wisconsin publication Daily Herald - I'm Aware that I'm Unaware. The article really impressed me and gave me more insight into my life, by reading about hers with FTD. Julie is a truly amazing woman whom I'm honored to have as a friend and also has an FTD Blog Julies Journey. There's a bunch of us FTD'ers that are in contact with each other who work to continue on with a life of purpose, happiness and productivity. We shun the death sentence given by FTD and keep living life while knowing we're putting our families and friends through hell as our brains liquefy and we slowly lose our minds and lives.

Each FTD'er is on there own journey. Our symptoms are similar but different as our lives and support for each other intersect. Julie and I both became symptomatic in our mid-40's with me bing about 8 years older. Julie got diagnosed quickly and I went through 6+ years of medical hell being misdiagnosed. Amazing what 8 years can do in the awareness of a disease. FTD has gone through 3 name changes since I first heard of it being called Pick's disease. More doctors are now aware and hopefully cases like mine will become rarer as time goes on.

I was amazed to read about team Krueger. "The team of doctors and caregivers involved that of a football team - a team in which Krueger considers herself the quarterback". Team Krueger has a neurologist, a psychiatrist, a neuropsychologist and a counselor. Julie also has a loving boyfriend and a local family. From the beginning she used her organizational skills and has her "end of life" plans neatly mapped out. Her will, life insurance, long term care and all the other things one needs to get done, she proudly got done. She is now moving forward the best she can knowing things are set in motion to as FTD progresses.

By contrast, there are those like me out there that were and are inadvertently trashed by the medical community because of lack of knowledge of FTD. We're lost and have lost much. If FTD was caught in the beginning my life would be a bit different. I wouldn't have lost my soulmate Tamara, who I lost after 6 years of caregiver hell. I'd have my Unum long tern disability which would make things financially easier and help me have funds to plan long term care.  I'd be seeing my kids who I miss dearly and help contribute to there lives. I'd have a will in place, medical proxy with my wishes known and all the rest that comes with "end of life" planning. I do have friends that are trying to help. A friend of mine has an accounting firm and set me up to get my will done. After months of phone and email tag, I finally got through to the person. We spent 45 minutes to an hour on the phone. I got off the phone having no idea what he needed or what I was suppose to do. I sent him an email requesting just a short list of what he needs. Never heard back.  I can't tell you how frustrating and depressing it is needing everything in my life micromanaged. Over a year ago I bought one of those online "Will" programs and couldn't get through it. I've asked a couple of people to help me, but it never happened. It's now in the mess of paperwork strewn throughout my apartment. I'm now planning on finding a local cheap lawyer to draft a basic cheap will leaving everything to my children.

Instead I have absolutely nothing set up. It's been over 2 years since I've been diagnosed, but I've been unsuccessful in accomplishing anything in regards to my future or own well being. I've been successful and organized all of my life and now I can't get anything done. I have good friends who've been trying but it's not happening. One of the problems is I look and sound to damn normal. People think I can do what I used to do with prompting, but it's not happening. My apartment has become a total wreck. My kitchen is a mess and a cockroach the size of the Empire State Building has moved in. Hopefully he's single like me and didn't bring his family. I used to have all my papers neatly filed. Now papers are everywhere. Closets cluttered with God knows what. I simply can't keep up no matter how much I try or plan. My hygiene is slipping but manageable. I don't want to get into it accept to say I received a letter from a friend who was reading one of my older posts about me being concerned about me brushing my teeth once a day now instead of twice. I remember that period and I figured since I was aware it was happening I would snap back to twice a day. No problem right. Wrong, it's once a day and sometimes I miss that. My wash which used to be done every Saturday with me cleaning the apartment. This was pushed to every other week to help me save money. In NYC we pay for the wash machines in the basement. Well I think I'm doing it once every 3-4 weeks now and the apartment is out of control.

As I've written before, social services have been squeezing me out and I've given up with the appeals process that I continually lose etc. Things are getting tighter and tighter. I've compensated over the last year by becoming extremely frugal and not doing my best not to spend money unnecessarily. Last year the sun, moon and stars didn't line up and I found myself eating cheerios and water for 6+ days. Was to embarrassed to tell anyone at the time, but I decided to cut back on many facets of my life including go downtown etc. Pretty much my life consists now of going to Starbucks 7 days a week and working my FTD stuff. I'm not destitute by any means, I just live within my means by any means possible. 

I'm struggling but have accepted that I need outside help. People have talked to me about getting an advocate. Right now, I need to start getting help. I can't let things slip anymore.

A few weeks ago my Unum disability case ended and with it came the reality that, that was the best hope for me having any financial independence. I had a few other things going like a book etc, but It's just so difficult getting anything done. As I wrote last week I unfortunately see myself heading toward's some really rough times with my health and finances declining. I'm on the edge and slipping and it's so scary. It's really hard being alone with all this.

My life long friend and Power of Attorney Marc Turkel set up a power of attorney trust account for people to donate money to help me. It should be up and running on this blog in a few day.

The last few days I've been distraught. The thought that this is how I'm ending my life as beggar has me on the edge of tears as I type away here at Starbucks. I've never felt so hopeless. The thought of not being able to somehow be master of my own fate and work my way out of this mess is incredibly stressful. Two nights ago I went out to the local pub and got drunk on beer and tequila. I was sort of sitting outside by myself and lost it. Crying, cursing and at one point slammed my fist on the table. I forgot I was filming and the camera went flying. At least it didn't break. I wrote what was going on to some friends and in my FTD Patient Support Group and received some excellent feedback. People made me aware that I'm not a beggar and It's okay to accept charity. I still feel really horrible of having to be dependent on society, but things are coming apart at the seams and I need help. 

I'm struggling and putting all my energy toward this blog, the groups, the film and the book if I can. I also refuse to shift my priorities and will keep my FTD work first and foremost.

My friend and power of attorney sent me a beautiful email which I read about 10 times. It had the beautiful words and seemed really touching even though I just can't put it together. Here is his letter sent to me a couple of days ago as I've been going through a really rough time.

Howard,
There's the good and there's the bad and then there's life absent good or bad. The sun just shines, the waves just roll in, there's a storm an earthquake and a flood. Is there anything wrong with any of it? No, it just is. You are. You draw breathe and live and the context of any life is what one says about it. I say there's nothing wrong and it is what it is. 

Every day people struggle, and every day they can take on what there is to take on or, they can produce epic drama for themselves and others. HOWARD you, mostly live in the world of just doing what there is to do, being who you have to be … in the face of circumstances … to make the difference you make. It is what what it is and I love you,

Marc  

Have been off Namenda for I think 4 days now and don't notice any difference. Still tired during the day and I really can't tell if it's any less yet. Will keep everyone appraised.

Some people ask me how I edit this. Usually line by line as I go. Right now It's 10:20am I'm tired so I stopped edited about 3/4 through and am just going to publish. This is what I usually do and come back later to check for typos. 

Waiting here at home for GLWD. It's some life we live.

Howard


Monday, October 1, 2012

Off Namenda and FTD Drug FREE

I've decided to become a medical Guinea Pig. Seems to me that nobody but the pharmaceutical company (Forrest) really knows if the drug Namenda works for FTD. It's a drug that was made for Alzheimer's that they say works for FTD. It has not been proven The major side effect of it is extreme tiredness which I suffer from. I've been taking Namenda for 18 months twice a day. I have no idea if it works. Most seem to say that they have no idea if it's working, but there there are no ill effects except harm to there wallets. That's pretty much where I'm at. Last week I received a letter that my extra help for pharmaceuticals under Medicare is being cut. I'll add that to the stack of denial letters I have. AFTD did let me know a few months ago that Forest Pharmaceutical has a program for free Namenda for those without limited resources. I applied and of course was denied. Another for the "denial folder". 

Coincidently there was a Namenda study released at the IAFTD conference in Manchester, England a couple of weeks ago. I will copy over the message relating to this announcement from Sharon Denny, program director of AFTD.

A multi-site clinical study of Memantine/Namenda use in bvFTD and semantic PPA that took place over the past few years is complete and the data analyzed. It's not published yet, but was the topic of a presentation at the Manchester conference. The study design could only detect large effects, and concluded "there was no benefit of Memantine/Namenda treatment in bvFTD of semantic PPA". That's not to say there aren't individuals who do experience benefit. Like all med/treatment questions there's variability from person to person. AND you should always coordinate med changes with your doctor; he/she will only be able to help over time if it's a partnership. 

For those that aren't that familiar to FTD, there are no medicines made to treat FTD. FTD is untreatable, unstoppable and incurable. Drugs for other illnesses are used in trial and error to combat the symptoms  for those suffering with FTD. If a person is under strict psychiatric monitoring, they have a better chance at being successful with the constant changes that are necessary as the brain changes.

Unfortunately, many psychiatrists have become just dispensers for pharmaceutical companies and society has come to believe there is a magic pill for everything. Instead of combining behavioral techniques with medications, they just throw drugs at you. Most times patients leave the docs office unaware of side effects. 


I was on up to 17 pills a day while I was misdiagnosed as bipolar. They had me on the harshest antipsychotics, anti-anxiety, antidepressants, sleep aids and others. They weened me off all of them over a 6 week period in the hospital psych ward. No one ever told me getting off some of then would be tougher than getting off Heroin. I was delusional, having hallucinations and all the sufferings some have getting off of pills after years of getting my body abused. Do I blame my doctors? No, FTD was and is a rare disease. Part of my fight now is to try and spread awareness  so people don't go through what I went through.


So do I take any med now because a doctor prescribes it. Hell no. Sorry, docs are no longer in God status in my book. Yes, I trust my neurologist Dr. Bell from Columbia implicitly. She knows I've been through the medication circus. What does my Psychiatrist think of me being drug free? I don't know because I fired him for incompetence. He is one of may shrinks that turned me into a drug addict. I went back to see him after a year of being off all meds for a year. He made sure my VNS (Vagus Nerve Stimulator) in my chest was off. I spoke, he listened about my FTD diagnosis. He never heard of FTD, but was glad I was doing well. Guess he hasn't kept up with his studies or missed that class at John's Hopkins.




FTD/dementia is extremely difficult to treat with drugs. Chemical and structural changes slowly destroy the brain. It is difficult to administer drugs to a constantly changing condition. It's the difference between shooting an arrow at a stationary target or trying to shoot an arrow at a rabbit that's constantly changing direction and speed. Pharmacutical options can often be somewhat effective but side effects can be equally disturbing. Drugs will pacify your mind into living an illusion that may or may not work for you. People with FTD experience a mindset that like that of a running rabbit, it's constantly changing direction and hard to pin down with a single drug. However, it's possible to incorporate subtle changes to routines and activities to keep depression and behavioral at bay, much more effectively than with drugs. Of course this is my opinion. Others swear that with the right chemicals and strict monitoring from psychiatrists, your FTD life can be much better. Do I disagree. No, to each there own.  I can't afford Psychiatrists or the meds so I don't even have to think about it. 

Many are doing well with drugs and of course there needed in times when the FTD patient might be aggressive and danger to others or themselves. Yes, there are times I feel it would be easier to be on drugs, but I've seen that movie before and am not interested in a rerun. I know plenty of FTD patients who take absolutely nothing like me except vitamins and supplements and are doing fine.


Okay, besides my heart meds I'm on Namenda for FTD to help with a abnormal activity in the brain and help people think clearly. Namenda, which I take twice a day and have been frequently forgetting at night without any repercussions. I checked on the web to make sure there are no ill effects. Withdrawal, uncontrollable giggling, making me a nice guy etc.


After cutting back to a half dose for three days I went totally off. I was scared I was going to grow 6th finger. Where would I find 6 finger gloves.


I stopped taking Namenda/Memantine 5 days ago and have noticed absolutely no difference. 


Of course I still take my vitamins, supplements and my weekly rations of red wine.

I was hoping the extreme tiredness/exhaustion I suffer would go away, but so far no. I'm still secretly hoping it's a Namenda side effect and not a FTD thing.

My neurologist is in the loop to me taking myself off Namenda and I highly recommend that any patients that are making any changes with there medicines, coordinate with there doctors.

Howard