FTD and Medicare

In July 2010, I re-entered the world as we know it. I spent about 7 weeks in the hospital psych ward  and was relieved to find out I wasn't bipolar. Now I had a some new weird opponent called FTD to face. Returning to my apartment alone and broke, I also needed to find specialized medical help and had to start dealing with insurance companies. I had medicare and a supplemental insurance carrier.

If you have straight medicare, you probably pay 80/20. There are many free medicare supplemental programs you can join for free.

 I called my medicare supplemental insurer, Fidelis who gave me the names of  2 neurologists in my area. I googled each name and I found Dr. Kyra Blatt who was highly qualified and specialized in dementia. I started seeing Dr. Blatt, a community doctor who I loved dearly and had gone way out of her way to help me. Dr. Blatt gave me some of the best advice I since being diagnosed. I was literally going crazy having learned I had FTD and was combing the internet for all information on this dreadful disease. Everything pointed to a soon to come drastic death. Dr. Blatt banned me from reading about FTD on the internet because there was so much inaccurate information. She told me she would've died a dozen times in the last month if she self diagnosed from the internet.

I was all shrink-ed out after 6+ years of hell. 17 pills a day, over 50 ECT's Electric Shock Treatments, VNS Vagus Nerve Stimulator surgically implanted in my chest with a wire running toward's the Vagus nerve to give my brain shocks.  I fired my current psychiatrist and decided I could do a better job, so I hired myself.

Now that I was off the 17 pills a day after being misdiagnosed for six years my head was slowly clearing from being kept in a medically induced fog. It took me close to a year to recover to my FTD self. My behavior, language and 6 year history was like a checklist for a poster boy FTD patient.  I was having many new difficulties which was discovered by my friend David and Dr. Blatt to have been side effects of the only drug I was on, Aricept. Dr. Blatt had contacted Dr. Ted Huey, a well known FTD specialist at Columbia. Dr. Huey confirmed that many FTD patients were having difficulty with Aricept, a drug made for Alzheimer's patients. Aricept is now on the "medications to avoid" list by UCSF. Dr. Blatt suggested that I start seeing Dr. Huey or one of the FTD specialists at Columbia. The only problem was my insurance didn't cover Columbia or any of the doctors in it.

At the same time I developed prostate cancer and my Urologist for that was out of St. Lukes hospital which was far from where I lived. I needed to have my prostate removed and surgery needed to be arranged. All the above was happening in November 2010 so I needed to act fast. It was open enrollment time for Medicare and I needed new insurance by December 31st.

The Medicare supplemental carriers were like vultures. I made some calls to the insurance carriers and found them extremely accommodating. They had free breakfasts at local diners, would come directly to my home and all sorts of fun places to meet. Each one had a yellow page type directory saying they covered just about every doctor in NYC. Each one also tried to close me like a used car salesman. My head was swimming and I was getting no where.

Finally I decided to do things reversed. Instead of looking at insurance companies and checking out there doctors and  yellow page type plans, I decided to find the doctors and hospital I wanted, then find which  insurance company met my needs. I needed to find the "Best and the Brightest" docs out there.

Columbia University Medical center was near me, so I started researching there doctors. Once I found out what doctors I wanted, I started calling there office managers and finding out which medicare insurance carriers they took.

I had long lists of up to 10 insurance carriers per doctor. It was painstaking work cross referencing, but I needed excellent for the major medical issues I had.

My priority was of course finding the best neurologist who was familiar with FTD. I met doctors Ted Huey and Karen Bell and liked them both. I was at an award diner where Dr. Bell won an award for being a top neurologist from Columbia. Dr. Bell was my age and from the area I grew in so there was a connection. Oxford Insurance was on Dr. Bells list.

I needed a Surgeon to remove my cancerous prostate. I found Dr. Ketan Badani was the Director of Robotic Surgery from Columbia. I met with him and liked him. Oxford.

My GP luckily took Oxford so I wouldn't need to change him.

My future Cardiologist is also a resident of Columbia and Harvard Med School grad. Oxford, yes!!!

I called the Oxford rep and she was at my apartment the next day signing me up.

One of the reasons I'm doing well is I have excellent caring doctors. There's nothing that can be done with my FTD, but Dr. Bell is experienced, intelligent and I trust her implicitly and she always has excellent advise for me. In fact, every one of my doctors I trust my life with. I've had enough screwballs and now when I see a doctor I know they listen to me and care.  I'm not just a number. I

I receive letters all the time from people having incredible difficulties with there doctors. My advice, go do the research on the internet and find the best doctors in your area. Check there insurance with the office manager and then go meet and interview them. It's only your life at stake. PS don't trust the online insurance carrier list of docs. They change insurance frequently. Check with the office manager.

Right now it's open enrollment time for Medicare. You can change carriers now. For those of you with choices of insurance carriers, do the same. Put in the effort to find the best docs you get a long with. You and your health will be thankful.

Howard

FTD - Down a pill, up a symptom

Down a pill, up a symptom. Seems like they should be linked, but there not. The new symptom started a couple of weeks ago. I was hoping it would go away, but hasn't. My lip and right hand have developed slight tremors. Not all the time, but it has been coming back consistently. My lip feels like it has electricity running through it. Right now I notice it, but it doesn't effect me at all. Hopefully it'll stay that way. If not, well just something else to deal with on the vast chalkboard of FTD symptoms.

For the last year or more I've had this indiscriminate cough. It comes and goes. No rhyme or reason, just a pain in the ass dry cough. No phlegm involved. I'm down to just a few medicines for my heart and blood pressure, so it was easy to look up side effects. Sure enough, Lisiniprol one of my blood pressure medications was the culprit. It was listed first as the most frequent side effect. Three days off and no more cough. Of course I should contact my cardiologist, but since I never even followed up after the results of my tests a month ago, why bother. I'm all doctored out. 
*I now have a follow up appointment with my Cardiologist for next week.

I did have a nice surprise at my local pharmacy. It's a neighborhood place and they've known me forever. I picked up my usual assortment of pills. The only difference was this time there was no charge.  I asked why and the guy behind the counter shrugged his shoulders and smiled. I've no idea what's going on. Guess I have a "drugstore angel." Happened to me there a couple of years ago with pharmaceuticals and other things I tried to purchase. Another wonderful mystery.

Things have been very quiet with me lately. I've been spending a few hours a day at "Cafe Bunni" and heading home. I'm not sure why I feel like I'm doing nothing with my life, but I feel so vacant. I guess I do to much of nothing and I'm just not used to doing nothing. Yet, I feel so comfortable doing nothing, but it's not me. Then again, me isn't me anymore. With FTD it seems me keeps changing.

Howard

FTD and Instant On

Thanksgiving was wonderful. I spent it at my friends Steve and Sheila. They had about15- 20 people there. It was a wonderful experience being around such wonderful people, many of whom I see once a year. Each person makes a dish so there's plenty of food. I usually bring bring ice and alcohol. This year I offered to make a big salad for everyone. I went up to Costco and another couple of stores Tuesday to pick up salad materials. I made a bit of a mistake acquiring salad materials. Instead of purchasing enough for 20 people, I bought enough for a small army. I didn't realize as I went from store to store I kept buying the same thing over and over. Plus in a desperate effort to get out, I was just grabbing, throwing in the cart and running. There's enough varieties of lettuce in my fridge to open a lettuce museum. My refrigerator is busting and never has been so full of veggies. I also killed my budget for the month. I forgot about my GLWD "Gods" Love We Deliver" delivery Wednesday so I'll be on the saladian rabbit program for a while. It'll help me lose the nearly 50 pounds I gained this year. That makes 3 weeks this month I've missed GLWD (2 because of Sandy). Today is Saturday and I still can't get into my fridge. I'm sure I'll give away a lot before it spoils.

A friend of mine just walked into Cafe Bunni. She'll take some salad off my hands. We're on the way to get almond peanut butter and other food outside the neighborhood. Almond butter is $11 at the local rip off store. I told her I have almond butter I could give her. She told me that she's seen mine and it expired a long time ago like everything else in my cabinet. Guess it's not like twinkies, that last as long as mummified Pharaohs. Whenever she comes over and I make anything, she checks out the exp. date and insinuates I live in a hazardous material zone. Hey, besides FTD, cancer, heart disease and obesity I'm perfectly healthy and don't get sick more than once every couple of weeks. Last week I did make chicken. I made a big bag of thighs so I would have enough for a few days. Sort of forgot about it and found it sitting out a day later. Didn't even think about it. Had a piece and ate the rest over the next few days. 

I've had to slow down quite a bit and retool my "instant on" mode. "Instant on" to me is when I become aware that I've been unaware of how inappropriate my behavior has been when I've created a mess. Normally it's not till hours or days that my "instant on" clicks and I realize what happened. Maybe It should be renamed "slow motion instant on." When it hits me what happened I usually don't care, but am aware of the realization what happened. Next is to deal with it, even though I don't care. 

*Just had a friend read the previous paragraph. It made sense when I wrote it yesterday, but I just reread it 5+ times now and can't follow it. She says it makes sense and that's good enough for me.

I do realize that things are a just a wee bit out of control in many aspects of my life. My routine needs to be more structured and I need to add many little things that are falling through the cracks. I decided to order a dry/erase calendar board. Ordered a cheap one from Amazon. This way I can add a task a day to what I'm doing and put a red asterisk next to critical things. 

I just have to keep adjusting things to try and make things smoother as well as life easier. 

Howard

FTD and Autism

The FTD and autism correlation question comes up frequently. I also notice family members of FTD patients frequently mention they have children with autism.  

Last week I posed the question to the AFTD helpline to see if there was any research investigating a possible relationship between FTD and Autism. The AFTD helpline is a free service for FTD Patients, Caregivers and the public to get accurate answers to FTD questions. The following answer was given to me by Sharon Denny, the AFTD Program Director: 

AFTD Helpline - 866-507-7222

There is certainly similarity between some of social behavior in bvFTD and in autism (withdrawal, emotional blunting, social inappropriateness, lack of empathy).  The similarity has prompted researchers to study how social thinking and behavior are controlled in the brain.  However, there is no evidence that directly links the disorders.  Autism is a developmental disability that begins in childhood and FTD a neurodegenerative disease with an adult onset.  

Researchers are looking into similarities in social behavior.  Schizophrenia has some similar symptoms and is another area of research.   If scientists can understand what cells, chemical transmitters, etc. contribute to the behaviors it will advance understanding and possibly in time treatment for various disorders.

One of the main areas of interest is something called von Economo neurons (VEN) which are brain cells that are involved in social behavior. Only higher mammals and humans have them and they ate found in the brain's frontal love in the anterior cingulate and frontal insular cortex areas. These areas are involved in autism, and vulnerable in bvFTD, but much less so in Alzheimer's.

There is also evidence that oxytocin (a hormone that acts as a neurotransmitter in the brain) shows some benefit on social behavior in autism. An initial study of oxytocin in Jan 2012 with people with FTD showed possible temporary benefit in reduction of social behavior symptoms. This needs to undergo more research though before oxytocin would be prescribed as a treatment. 

These examples are two ways that researchers are trying to learn why and how social thinking and behavior symptoms occur in different disorders. It's interesting stuff, but does not indicate that the various disorders are linked through a common cause, gene, or pathology. 

Sharon Denny

Program Director

AFTD

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Thanksgiving's has arrived and I'm trying to figure out what there is to be thankful for: Absolutely nothing.

Just kidding!!!

It's amazing when you have almost nothing left to lose, how much there is to gain.

I've had to face many challenges over the last year. Amazingly, the year is coming to an end and I'm coming out on top. I've needed help in many areas and magically it appeared. Random acts of kindness from people who I know and many from people I've never met or spoken to. 

Then there's my "white whale" FTD. FTD is still hanging out, but I'm still ruling Howard's Brain. Where FTD is progressing, it's slow enough to hopefully keep me around for many a year. 

Somehow I just lost the rest of what I wrote here. (NAFW) is in effect and I didn't curse out loud. Oh well, there will always be a tomorrow.

Have a Happy Thanksgiving!!!

Howard

FTD and Decision Making

Went to Cafe Bunni for a couple of hours and got some work done this morning. Cafe Bunni is nice and quiet till about 9:30 -10am. Then it converts to Bunny Cafe Daycare and I'm so out of there. 

Started heading downtown by subway around 10am. I need a blanket cover and I want to get some cheap picture frames. I have no pics on the walls and I'd like to have my kids and friends up there. Into the the NYC Subway system I vaunted. After two stops I realized I was already out of it and finished for the day. Still, I might be able to find some of these items in Century 21. I then thought about the last time I was there. It was about a year ago. I went there looking for picture frames and a blanket cover. It was also crowded. I shopped for about 30 minutes in the crowded store and left empty handed because of indecisiveness and went home. In fact, I've seen the same exact movie quite a few times going to that same store and now I was about to have a repeat experience. But maybe, just maybe I could get the stuff.

As I sat in the "A" train reality settled in. I got off the train and switched to the other side of the tracks going the other way. 15 minutes later I was texting a friend what happened and texted,  "I hate being F __ing sick". She soon texted back that she remembered me doing the exact same thing last year. She texted, "At least your not getting worse--you had the foresight to turn around this time". Then she texted, "Thinking about it like that actually makes me happy".

I couldn't help but laugh. I texted her that she's warped and I love her. She was right. I know FTD is slowly progressing but I'm dealing with it better and that's half the battle for now.  I'm not nearly as stressed out and going crazy over the FTD symptoms as I was a year ago. Hey, for the moment I'm controlling this strange disease. I've also calmed down quite a bit. I spend most of the time at home alone and don't push myself anymore. The noise, hustle and bustle of the out side world it just to much for me.

If I go to Costco with a little list of exactly what I want it's no problem. I zip through and leave exactly what I came for, if not less. Sometimes I'll see something else I need and pick it up, but 90% of the time I'll leave it in an isle before I get to the cash register. Then of course at the cash register I panic over money and leave some things I came for anyway. At home, it's easier. for half my meals I've GLWD  -"God's Love We Deliver". They come in aluminum containers and I throw it in my mini-oven not knowing what's in it. NO DECISION NECESSARY. 

That's what it's all about. My decision making process is shot. It's amazing that a part of the brain enables us to make decisions and choices. I forgot if that's the Fontal or Temporal lobe, but it's one of the two.

Have thought it out with the part of my brain that works and decided I will go back to Century 21, except I will go early. It opens at 7:45am, so I'll skip McBucks or Bunny and head there when I'm fresh. I really don't know if I'll be able to make decisions even when I'm fresh, but I'm going to give it a shot. 

Life is not boring and I'm happy that I've got this figured out whether it works or not. 

Howard

FTD and Heaven on Earth

Well, just finished educating someone to FTD, so my evangelistic advocacy campaign to educate goes on. It's an idiosymplamtic part of my existence to educate till everyone on Earth knows that FTD is Frontotemporal Degeneration and not a flower delivery service. Time is standing still for me, so I have all the time in the world.  It would be so easy just to sit in my apartment all day and do absolutely nothing. FTD just keeps dragging you to a unmotivated, secluded place. Each morning I set off on a new plan to escape my brain inflicted isolation. 

I'm still smiling while over at an incident a few of weeks ago at Columbia. I was there for a Stress Echocardiogram. The test took about 45 minutes. Of course I jabbered on about FTD. On the way out I passed the doc and assistants and waved. One waved and said they were watching the 'Howard's Brain" film trailer. I stuck my head in and noticed one computer with my blog on it and the running the trailer. Bonus, medical personal getting educated. *** Just realized that I never called to get the results of all my heart tests. Ooops, well I guess my hearts still beating.

Everyone once in a while something happens that reminds me that there is heaven on earth. I've been struggling for months to try and find a way to see my kids for winter break. Trying to organize anything has had me so confused and stressed lately. Yesterday I received an email that a person who I've never met or spoken to before arranged 2 tickets for both my children to come visit me in NYC from Seattle. This was an amazing show of generosity by someone who has a family member with FTD and realizes how important it is to be around family. Eric Zuckerman is also making an FTD documentary called, "Project Remember" which I'm honored to have been asked to participate in.

Had a conference call yesterday. Running it was Sharon Denny of AFTD, who was helping me and 2 members of "team Howard" Marc and Alice organize "end of life" and "rest of life" plans. There are others that will be helping, but Marc and Alice will help expedite things I need to get done along with help of some other close friends. I'm so lucky to have such loving friends around me. Without my friends I would've never made it. First on the list is my "will" and work on getting my disability from *Unum reinstated. AFTD is available to help those families or individuals that need proper guidance in dealing with future planning or learning about FTD.

There is also a link on the right hand side to a FTD documentary made by patient Susan Grant called, "Planning for Hope" which discusses long term planning.  

*Unum is the despicable Long Term Disability insurance company that refuses to reinstate my disability because of a legal technicality. They were already fined 15 million dollars and and forced to reassess 200,000 cases because of there unfair practices. A drop in the bucket for a 6 Billion dollar company. They are now cloaking there screwing of people better according to legal articles. Of course I always go off on a Unum rant, because it's proven when I was working I had FTD and was forced out. I may never get my disability reinstated, but I will be a pesky mosquito that they will have to constantly swat at.

Ying and Yang - The generosity of the individual helping me see my children during winter break far outweighs the screwing I'm getting from Unum. I'll make sure I keep that in my brain and make sure it gives me the strength to beat down my other FTD demon symptoms that haunt me. 

Any hope and acts of random kindness I get goes on for miles and is deeply appreciated.

*For those of you that have a firm diagnosis of FTD. I run an online support group. To join the FTD Patient Support Group, you will find instructions on the upper right hand side under links. 

Howard

FTD: "Which child would you like......

"Which child would you like the airplane ticket for?" 

A simple question that threw my whole world off kilter.

I've been lucky enough have a charitable person and an organization offer to fly each of my children to NYC for the upcoming Winter Break. At first I was going to fly to Seattle with the generosity of my friend Tamara's Frequent Flier miles. I booked the ticket and was immediately reminded by many who love me the difficulty I've had on long trips over the last year. Not only being there was difficult, it actually took over a month for me to recover and get back to normal in NYC. My friends were shocked that I booked it without telling anyone. That's because I forgot the extreme difficulties of when I was away. 

After all, there's nothing wrong with me. A true feeling most of us with FTD have.

Then it came back to me. The day and a half I was in full panic because I thought I lost my backpack. I didn't sleep at night thinking of where I might of left it. I also went back and forth to the car 5+ times checking to make sure I didn't leave it there. Turned out my friend moved it off the designated "Howard Glick Backpack Chair" because he wanted to sit there. He moved it about 5 feet. Off course he had no idea. Then there was the "Enterprise" car rental debacle where in the end they actually gave me the car for about $45 for the week in order to make me happy so I wouldn't make it the worst day of there lives. The list could go on.  I had a wonderful time seeing my kids but it wasn't an easy trip.

Funny, most people with FTD have a difficult time with the airports, flying, hotels etc. That part of traveling is like cruise control for me. I guess years of 120 flights a year make that part of traveling easy. I stick with  my traveling mantra, NAFW - "Not a F__ing Word" and that keeps me out of trouble.

Okay back to the present. I've been trying to organize plane tickets for the last week+.... Everything was going around and around in my head trying to figure how to organize getting everything coordinated for the kids. My ability to multitask and organize is in really bad shape now. I just can't put things together. For many of us with FTD this is usually one of the first symptoms that affect us in our occupations. This was a difficulty for me when I first started showing symptoms, but now it's paralyzing.

I was in the office of the organization that was giving me one of the tickets. They had all the paperwork that needed to be filled out in front of them. I figured I had all the bases such as dates etc. done and was ready for anything. The first question threw me had me sitting there staring not knowing what to say. It was a killer. "Which child would you like the airplane ticket for?" the woman asked. I just sat there not having any idea of which to pick and couldn't answer. My mind was a turbulent mess trying to think of if it mattered who got what ticket and if I screwed up. So I just sat there in an uncomfortable silence and finally blurted out my daughters name. 

I felt so helpless sitting there not being able to answer or figure out a basic question. 

But for now, I've been able to write for the first time since this ticket debacle started.

Keep on Truckin.

Howard

*For those of you that have a firm diagnosis of FTD. I run an online support group. To join the FTD Patient Support Group, you will find instructions on the upper right hand side under links. 

FTD and Election Day

Yesterday was election day. Of course I had to put my input into who should run the country as well as the mistakes at the electioneering zone. When I arrived at the polling office there was a giant sign stating, Vote Here, election day and all the other nonsense. I pulled the door and it was locked. I rattled it couple of times, but it was really locked. I found another door with a million signs and arrows. I then heard an elderly voice behind me with a European voice say, "Vaht its closed" referring to the voting site being closed.  I turned to see ms. Vaht starting to turn to leave. I yelled that the entrance was by me and she waddled over. 

Once inside it was a madhouse. I asked to speak to one of the supervisors. A bug eyed rotund guy wearing one inch thick glasses approached me. I explained how the door was locked and people might leave without voting. Ms. Vaht was eagerly reinforced my complaint. Bug eyed guys eyes were literally rolling around in circles. He was distracted by the madness around him. He said it had to be unlocked and he would take care of it. As he walked away I could tell he was overwhelmed and it has a 11% chance of getting done. 20 minutes later still standing on line, he walked by and I stepped out and cut herr portliness off. He looked at me eyes still rolling and I said one word, "door".  His mouth opened and then it clicked. "I'll tell the custodian". Still blocking his way I told him when I finish voting if the door is still locked, I'm ripping the sign down. It registered and he walked away. 

I voted and on the way out there was a really old lady hunched over a walker. The woman behind the desk was telling ms ancientness she was at the wrong polling station. Ms ancientness declared she's been going there most of her life. I turned, took one step and stopped. NAFW -Not a F---in Word (my mantra) I said to myself. I turned back and left. Of course I checked and found the Vhat door unlocked. Homeward bound.

I know much of what I do and say I can't control, but there is plenty I can. I'm trying my best to keep things under control and stay out of trouble. I've  been going out less, actually rarely and only in the mornings to keep things under control,  plus I get tired all the time, plus I'm unmotivated, plus the overstimulation gets to me stressed,  plus a million of the other smorgasbord of rotating FTD symptoms. Good thing my Subway just started running again. I need to do things or I'll start losing my mind  :-)

FTD is a rough disease. The person who gets it slowly loses there mind and at the same time drives everyone around them crazy. At least there's no pain except for testing. That's some consolation for slowly losing your mind. 

I've been through every test possible and will not have anymore. Many want to see how fast there digressing and get tested yearly. That's there option. My advise is when you have a firm diagnosis of FTD which is incurable, untreatable and unstoppable. Give your mind, body and wallet a break and go enjoy life. Stress is one of the worst things for an FTD patient and this FTD'er will avoid the medical community when possible.

Spinal tap was the most painful. It was a painful and cruel test. PET scans and other scans are like being in an airplane engine. You can get definitive  results for a FTD diagnosis results from PET scans and neuropsych testing. All testing will continue to evolve and change. It wasn't to long ago that a Frontal Lobotomy was totally acceptable. While I was in a medically induced fog and misdiagnosed as bipolar in Seattle some idiot told me the only cure for me would be a Frontal Lobotomy or join his self help group Landmarc. I realize now years later how prophetic our conversation. Every person with FTD  Frontal Temporal Dementia comes with an automatic surgery free Frontal Lobotomy au natural.

The only 100% way of be sure you have FTD is an autopsy. I'm looking forward to mine so they can tell me I've had Fluffferfoot and not FTD.

Howard

FTD: Pizza on the Wall

The steeple to the left is George Washington High School. Now it is home to between 600-700 displaced by Hurricane Sandy. (shot from my bedroom 11/3)

There is a lot of suffering in NYC and the East Coast. I'm lucky where I live very few were affected by the storm. My ex-wifes home was swept away into the ocean. My weekly delivery from "God's Love We Deliver" didn't make it. A few people have written to me that there making emergency deliveries. I have FTD, but there are people are suffering more than me without electricity, water or displaced. I'd rather it go to people in shelters that have lost everything or people that are house bound or bed bound. 

Have a dilemma here. I see my my children twice a year now. When I first moved back to NYC from Seattle 4 years ago, I had plenty of frequent flyer miles and still had money left. I used to see them at least 4 times a year. Now times have changed with FTD and I see them twice a year. Christmas break is fast approaching and the people who offered to help so my kids could come to NYC didn't come through. One friend offered me Frequent Flyer miles for one ticket. At first I thought I'd be able to book one of the kids to NY and then I'd be able to get the other ticket. Unfortunately because of the Holidays it's twice the amount of mileage to come to NYC as to go to Seattle. There was one choice. To book myself a ticket to Seattle and visit my kids for a week. I made the reservation. Traveling is difficult for me these days and recuperating after takes a while. Hey that's life and it's my decision. Unfortunately life is not that simple with friends telling me I jumped the gun, was impulsive shouldn't have booked it. Last time I was there I rented a car and drove fine. I drove a friends car with a stick a few weeks ago and that was okay. Besides, there's no one I dislike enough in Seattle to run over.  Not yet anyway.  I'd love to switch plans and have Chelsea and Myles come to NYC, but that's not likely.

Of course this whole mess just adds to my stress level. Came close to having a couple of outbursts in the kitchen, but held myself in check saying to myself, "Remember the Pizza".  Not so long  ago I had an outburst and threw a whole pizza against a wall. Of course the wall I threw it against was above the oven and most of the pie went behind the oven. After cleaning the wall I went to get the Handyman to help move the oven and gas lines to get the Pizza out. He knows I've some strange brain disease and has seen some of my antics. He asked with a smile how the pizza got behind the oven. I told him I was the giving pizza flying lessons so it could self deliver and I wouldn't have tip the delivery boy. 

Have canned Starbucks for the moment and am writing from Castle Glick. Some generous people sent me Starbucks e-gift cards and after many months they ran out. I also haven't been enjoying the crowded, noisy McBucks atmosphere. It never really recovered from the renovation mess and I haven't been enjoying myself. As of today I still don't have subway service,  so heading downtown is out. I declare myself an official McBucks orphan. 

Yesterday, I received a text from Warrioress Diana Winoker. You might remember Diana was featured  for the Alice Walton "Forbes" FTD Patient Series.

Alice Walton's Forbes FTD Patient Series

Diana has FTD and some other major health issues. Dynamic Diana gets up every day and gets out of the house and volunteers somewhere. She has every excuse in the world to sit at home everyday, but instead charges out to volunteer and help with different causes. 

Diana was rear ended a couple of days ago and the accident actually had her back ( which was bad already) injured and black and blue. She had to do the hospital thing etc. Guess what, Diana the fighter was out yesterday volunteering for the Tampa Fisher House at James Haley Veterans Hospital. She sat patiently in pain waiting for the golfers to come in while also watching her Tampa Bay Bucs win. 

People like Diana make life worth living. People with heart and substance.

"Howard's Brain" film project update. I'm still filming away and was just informed by filmmaker Joe Becker that we've amassed 3 Terrabytes so far!

For those of you that don't know how big a Terrabytes is, it's somewhere between a Tyrannosaurus Rex and a  Triceratops.         

Howard

Today I won

Sitting here at Starbucks by myself at 7:30am shows how much the city is dead. I have two friends who are small business owners. There businesses are both shut. One because his building is in the affected area, the other because her businesses server is down by the financial district which has no power. Schools are also closed keeping many home.

Just found out "God's Love We Deliver" is closed. Everyone in NYC is effected by Sandy, FTD'ers not excluded. GLWD are delivering to those in shelters from the storm. What a great organization. There doing the right  thing. In society we need to sacrifice to help others that are also suffering. Even though I've become a lot less tolerant for bullshit, at the same time I'm much more compassionate towards those sick or in need. 

Unfortunately for me, that's one weeks supply of food gone. A pit is in my stomach as my budget is getting stretched. I'm fine, but can't cut back much more. When I say budget, there is no actual budget. I can't figure out what is going on financially and never know where I'm really at. My friends tell me I'm okay, so I guess I am. I think :-) 

Have barely left the house this week. The hurricane was some experience. I did go to a party with some friends the night after the hurricane. I had a good time at the party, but everything was going so fast. It wasn't in real life time, I was just having difficulty comprehending everything. I had a good time, but tired out quickly and was overwhelmed. I woke up in the middle of the night thinking of conversations at the party and was having such difficulty. I wasn't sure what I understood and what I didn't. Everything seemed jumbled. It's so easy for me to fall into sensory overload.

It seems like getting anything done these days is a major task. No matter how much I try, it seems that I can't focus. My attention span is incredibly short now. I get distracted by the simplest of things. I have a dry erase board I bought about 8 months ago. This was so I could prioritize critical things to do. I was going to ask the handyman to hang it. It's still in shrink wrap. I used to be very organized and able to multitask. "used to" is key. Things I "used to" be able to do and accomplish are gone forever. There is no magic pill or therapy to bring these life skills back. There gone. I just have to keep trying to compensate by finding other ways of doing things.

I've been wanting to do more since getting off the pill Namenda, but I still get really tired and need to lay down in the afternoons. It's not the same collapse exhaustion from the Namenda. Now, it's just a tiredness that I can only describe as my brain is exhausted. 

It gets so tough trying to pick myself up and get going these days. Writing this blog used to so easy. Now, it's literally one sentence at a time. I feel I need to get one out every couple of days, which I have been. This is the last consistent thing I have going. I'll have nothing regimented or any routine at all if this slips. I haven't been in Starbucks in 2 days which isn't good. Right now I have to be so careful of not falling into the trap of never leaving my apartment. It would be so easy to do. 

It's such a crazy life. I need to spend some time in public and get things like the blog accomplished so I stay a part of the human race. I have to fight to keep what little routine I have. What is routine and normal living of life is such a struggle. My brain now literally tries to keep me from doing anything. Just sit and vegetate. That is what my brain wants me to do all the time. Nothing. It's a daily battle and a test of wills. 

Today I won. This blog is done. 

Have a great weekend and remember to live each day like it's your last. Appreciate what you have.  Life is precious and things can slip and change in a heartbeat. 

Howard

Sandy in my Apartment - Pics & Video

Sandy

Morning

Video from Apartment  (35 sec each)

Morning after Sandy

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

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

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

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