Friday, December 28, 2012

FTD - Are we in Control

First time I've gone to Cafe Buunni in about a week. Incredible how noisy it is and there's no one here. Thank God for noise reduction headphones and music. They should be given out free to all FTD sufferers. Noises are amplified and with FTD you hear everything at once. If you go to a concert, it's like you can hear each individual instrument and voice. It's overstimulating and overwhelming just to be in society. I live in NYC which is far from the quietest place on the face of the earth.

A few weeks ago I went to the movies and saw the new James Bond movie. Funny, can't remember the movie or what it was about. but I can remember a couple of annoying people. I went to the early morning showing so it wouldn't be crowded and of course it's matinee prices. People were few and far between. I already had implanted in my head I wasn't going to say  a single word to anyone during the movie no matter what. Of course one seat in front of me to the right was Mr. Idiot who needed to check his texts every 5 or so minutes. After a few of these I was no longer watching the movie and figuring out my options. The most tempting was just slam the back of the chair with my foot since I couldn't say anything. Oh, BTW I try to maintain status quo in my life by using my Mantra, NAFW (not a Fu__ing word) in most public situations. If I'm in a constant flowing situation like in the streets or in a supermarket, I don't have a chance at not reacting or keeping my mouth shut to any situation that happens. But if sitting in Cafe Buunni or a movie theater where I can sit or have some focus, I usually don't say a word.

Back to Mr. Idiot and his texting. I tried redirecting my body so I wouldn't see the light. Failure. I was going to shout in his ear to shut off his F __ing cell phone, but NAFW kicked in. Luckily the stalemate ended and Mr. Idiot was saved by the kissing couple behind me. Hey when your young, movies are for making out. I only wished it was me. But, yes another big but, they stopped making out and started having a conversation in spanish. Not whispering like you would expect, but in normal conversation voice. Unfortunately I didn't have any James Bond weapons with me. NAFW. Mr Idiot again with the light from his cell phone. NAFW! Okay, I'm going home. I stood up and looked at Mr. Idiot and kissing couple. Fuck em. I just stood there looking around for an empty area devoid of human beings.  Kissing couple said something to me. I was blocking there view. Poor babies. I looked them and smiled. NAFW.  I had spotted an empty area but was in no rush. Maybe I should just stand there for the rest of the movie. Eh, off I went to the emptier section where I watched the rest of the movie in peace.

My kids are in now and we're heading to see a movie this morning. I do my best as a parent to teach them manners and install values in them. Of course when your divorced, part time teaching is tougher. Last night we ate at a restaurant and my daughter (19) was telling me how I was sort of "out there" tough she and my son (15) were young. Chelsea reminded me once years ago we went out to a nice restaurant  and we all left before the food arrived because neither of them had there napkins on there lap. Chelsea told me I was always a bit extreme, even before FTD. I looked at both kids and asked where there napkins were. They both smiled. Neatly placed on there laps. Point made.

I've always been a bit tough with out there techniques. It's helping me with my never-ending battle with FTD. Yes, I break down and throw a pan with eggs in the sink once in a while. Dealing and being aware of "end of life" reality and knowing your mind is decintergrating slowly with no chance of recovery gets intense. My union with FTD is one of constant battles and accommodation. I keep trying to live life with my head up and keep fighting on no matter what. 

So what are my New Years resolutions? To keep my attitude positive and not let FTD tear me down. I'll keep fighting to be aware of the symptoms and do what I can to manage them without beating myself up for things I can't control. Will I fall? Yes, but I'll get up. I'm planning to keep filming and keep myself out in my NYC world with my camera so one day people can see what the world of FTD is really like. I've some FTD awareness trips already planned, so I'll be taking "Howard's Brain" on the road. 2012 is almost over and it's been a good year. I'm alive, thinking, have good friends, my children and am living life. I've also seen the best humanity has had to offer with some incredibly generous people help me get through both spiritually and with other help. What more can you ask.


Thursday, December 20, 2012

FTD Routine Crash

Amazing how easy it is for everything to go Kerfunkle. The day started out okay with be having my morning tea and work at Cafe Buunni. Then went home and did the Christmas card thing.

Then came lunch. No problem. I went to the fridge and uh oh, no GLWD aluminum food containers. Forgot that I cancelled my meals on "wheels" type delivery Wednesday because I had a meeting. I have  nothing else in my fridge so I decided to head to the store. Well, I just got back after spending an hour walking in and out of 2 supermarkets and 4 restaurants. I deju vu'd to months ago before the charity food service started and I was right back there. Everything just went Kerfunkle. I couldn't decide what to eat or what to do. I vacantly stared at menus, looked at the same foods in the supermarket and couldn't make a decision. You would thing this FTD decision making problem might just give a little break. Nope, standing in the street, cold after my second round to the supermarkets I just stood there stifled and wishing I had my "Howard's Brain" camera to film this. I then realized I stood on this same street thinking the same exact thoughts last summer. Kefunkle.

I do have eggs in the fridge and haven't touched them in a while. A couple of weeks ago I went off the Atkins Diet after my my cardiologist and girlfriend beat me up. Since then I haven't eaten breakfast. Why? I can't decide between eggs and cheerios. Each morning I get up and go to the kitchen and can't decide what to do. Kerfunkle.

What part of my brain is disappearing to make me go through this. It's a good thing I'm losing my mind or I'd think I was in trouble. 

Now it's 1:30pm, I'm lightheaded and haven't eaten a thing yet today. At least I'm losing weight. I'll be fine. It's just another bump in the wonderful world of FTD. Actually, I couldn't figure out dinner last night, so my last meal was  pizza for lunch yesterday. Kerfunkle


Wednesday, December 12, 2012

FTD and Surviving the Holidays

It's taken me many years to learn how to handle holiday situations and I've certain strategies which now work. Whenever I go somewhere I need a "quiet escape room". Usually an hour or two is all I can take of all the noise, smiles, overstimulation and holiday cheer before I start unraveling. I start heading towards a negative place with inappropriate remarks and behaviors that I'm unaware of coming out. Rather than force whoever I went with to leave and be a total party pooper, I always make sure there's a quiet room I can escape to and lay down for however long it takes. I used to meditate, but that stopped some time ago.  People know I have FTD and it's never a problem finding a safe room. I'm happy to be around friends and it doesn't matter if I miss the meal, event or whatever. I might fall asleep or just lay there quietly.

I used to just run off if possible or make make some peoples lives miserable. No more, now I head to the quiet escape room and maybe I have some time left to hang out and really enjoy myself. No matter where I go now, there's always an escape plan. I do much better at planned events. Things like travel, airports conventions. Well there like a 2nd home to me. Earlier in the year I went to the AFTD conference and the whole thing was a pleasurable experience. Yes, I did take a break now and then and escape the hustle bustle, but it was an excellent conference.

As far as helping cooking and preparing. If I know in advance, I can work on preparing something, but even that has it's challenges. At Thanksgiving I was asked to bring ice and dinner rolls. Instead I offered to make salad. I was told to make salad for just 8-10 people. I made it for at least 30+. It blew my budget and I wound up giving much of it away. Next year I'll bring the ice. I just have to give up things I used to do and change my way of life to coexist both with FTD and the world around me. 

When you have a progressive disease like  FTD, things are going to keep changing and it's always expect the unexpected from yourself. I am lowering the expectations of myself and letting people know to expect less of me. That's extremely difficult  constantly giving up cooking, driving, helping with kids etc. for those of us aware with FTD. If we don't give it and screw up, we usually don't care and that frustrates and makes angry the people around us. If your a caregiver you need to realize if you get one good hour at a holiday situation, that's a good thing. Take and appreciate that. Don't dwell over years past. Enjoy the moment and wreck your normal brain over what no one can control.

Traveling with FTD for me is easy now. My Mantra NAFW - Not a F--ing Word has saved me many a time. I know longer say a word at airport security, hotels etc. After 120 flights a year and over a million miles, I'm on cruise control when I travel. It's extremely easy to get out of control with FTD. One wrong question and we're in someones face. Airports and hotels are perfect places for nonsensical questions that get a normal person crazy, never mind an FTD'er. My advice to caregivers. Drill NAFW into your loved ones head long before they travel. NAFW means ignore everything and just comply, now matter how stupid the person is in front of you.

Just try and enjoy the holidays for what they are now and don't push yourself, caregiver or patient to make it like past years. A couple of great hours is better than despair. Make the best of every moment.

I spoke with someone last week for 45 minutes who has FTD. He was a great guy who is still enjoying life. He knew he had FTD, but couldn't tell anything was wrong with him. To him he's fine, even though he knew there was something wrong because everyone around him keeps telling him that. His behavior was off, he new it but he's always been on the wild side. He was sad he could no longer work or do what he was doing, but he was determined to enjoy life and keep moving on. Attitude and mindset is everything. Even when your slowly losing your mind.

The AFTD 2013 conference was just announced. It will be in Salt Lake City April 12th. Patients are invited. Last year was the first year AFTD had patients and it went really well. This year there will be much more time for FTD patients to hang together, enjoy themselves and discuss ways to make life better and easier. There will be more to come. 


Thursday, December 6, 2012

FTD and Morning Routine

Starting the morning routine is the most important part of the day. If I don't start right the whole day comes apart at the FTD seams. I wake up at about 5am. I've breakfast between 5:30 - 6:00am,  shower, shave etc, watch "Morning Joe" news and am out the door slightly before 7am. It's then onto Cafe Bunni, where I'm productive with my blog and work anywhere from 7:00 to 10:00am on average.

This routine is done 7 days a weeks now. It goes smooth most of the time, with me having specific times to make sure I'm up and getting things done. Everything's a constant at that time of day. I don't really care for weekends because my morning news show isn't on at 5:30am. If we could only eliminate weekends, my FTD unionized world would be much tighter. I don't think the public would mind going on a 7 day work week for my convenience. 

Of course my FTD world isn't always perfect and morning routine, though mostly stable can easily be shot to hell. Now that I'm sitting here and actually thinking about it, it's not only disturbing how regimented I am, it's sick. Good thing I have FTD or I'd seriously have to consider seeing a shrink. Breakfast has to be eaten by 5:30am. The MSNBC news program starts at 5:30, so I need to be back in my bedroom by then or things start getting off kilter. The regular 5am news is usually on with a commercial break about 5:26am, so that's more than enough time to eat a hard boiled egg. If I get an earlier start, I might makes eggs over over easy. I only cook if I have nothing negative on my mind or have zero pressure. I can lose it easy. A flipped over broken yoke might mean the pan thrown against the wall or sink. A hard boiled egg shell that sticks to the egg means the whole egg getting crushed in my hand and thrown in the garbage. If things don't go perfectly, FTD pushes me aside and takes over. Even when I break two eggs into a cup, if one one yolk breaks, into the sink or garbage it goes. Probably once of twice a week breakfast doesn't go perfectly. I'll sometimes go through 2-3 hard boiled eggs before I eat one. If I get to the news and it's already started, it no big deal. Vitamins and pills downed at this point. 

Next comes the flossing and brushing routine. I wait for a the commercial to come on, grab some floss and floss while watching the news. I continue on to brushing the same exact way, running back to the bathroom to spit out toothpaste. Listerine and I'm done. I used to brush and floss twice a day all of my life, but that stopped about a year ago and I've been unsuccessful in keeping that piece of hygiene on track. I'm suppose to care and I do, but I don't. A few more quotes like that and I can run for President in 2016.

Forgot to mention that my laptop is with me on my bed from the moment I wake up and I'm constantly going back and forth to it.

I watch "Morning Joe" from 6:00- till I head to Cafe Buunni about 7am. Of course I squeeze in a shower, shave during a commercial break. I use one of the old fashioned grandfather double sided razors and usually cut myself up a couple of times a week. People ask me why I don't switch. $7 for two year supply of a blades on Amazon. I don't mind that battered look either.

Clothes, well I wear the same pair of jeans all the time. I used to do the wash every Saturday, but that stopped long ago. I get an occasional comment about my appearance or hygiene, but I'm far from out of control. 

That's my morning routine when nothing goes wrong. Things get a bit dicey when things do go wrong. If I have trouble sleeping and wake up past 6:30am or something distracts me, I might get it together and go through a quick routine and get out the door shortly after 7am. If I wake past 7:30am, chances are I won't make it out the door to the following day. In fact, I might not even make it out of bed. Everything just collapses, breakfast, brushing teeth, shower, shave etc. don't get done and I don't even think about it. When I try to get going, it just doesn't happen. The longer I get distracted, the greater the chance I'll head toward's an FTD frozen place. Couldn't care less. This has gone on for minutes or days at a time before I pull myself together. I'm not sad or depressed, I'm perfectly happy and comfortable doing nothing. Then comes the reality that I can't let FTD start to dig in or I may never be able to escape. I need to push myself back into my routine. If I go have tea 7 days a week from 7-10am and never leave the house besides that, so be it. I'm fighting this thing alone, getting out and adding purpose to my life by sitting here writing and doing other work to further awareness of FTD. I do incorporate other activities in my life, but there becoming few and far between. Hey, I have purpose and I'm happy with what I'm doing. 

Homer, AK 2004  
Taken while on work assignment. I had a life then and I have a life now. I made the best of it then, I'll make the best of it now.

I was invited to participate in an FTD symposium in Arizona. Some have advised me I can't. Right, never believed in the word can't

One day this blog will turn to gibberish, but no one can ever say I didn't life to it's fullest. Time to head to the Cardiologist this morning and make sure this heart of mine is set to continue this journey. 

*BTW - Had the superintendent of my building hang up my dry/erase calendar board. I filled out a week ago. Haven't looked at it since. Shwiah, Shwiah - Slowly, slowly in English.


Monday, December 3, 2012

FTD and Overstimulation

This has been a wild journey with FTD for the last 8 years, but I think I'm finally finding some peace.  The last few weeks or month have been going really well. I've found less is more. I've accepted I need to do less and am functioning better for it. I used to think that I needed to somehow find a way to stay active and try to live a normal life with FTD, but that's not possible. What I found is FTD has a life of it's own and there needs to be a union of the two of us, instead of  a constant battle over control. Over the last couple of years I've tried to get my FTD ass out into an overstimulated NYC world. I've desperately been seeking ways to fit in and each futile effort had me adjusting and readjusting to find a path to happiness.

A few weeks ago I turned around on the subway while heading to a store. I realized I kept going to the same store for over a year and was overstimulated by the time I would get there. I would always come home from the two hour trip anxious, tired and empty handed. I would give myself about 10-25 minutes before I would abandon ship. Crowds, lighting, noise etc. would prove to much for me. Everything was amplified and I was aware of everything happening at once and overloaded. (Right now I'm at Cafe Bunni and there's this plump woman standing 2 inches from me laughing and giggling about some nonsense. She's been at this for about 10 minutes and I'm using my Mantra, (NAFW) Not a Fu__ing Word). On the verge of me leaving, she sat down to eat her giant croissant and coffee her husband brought her). Thank f God.  Someone bumping into me would result in a cocky, if not inappropriate response. Someone trying to hand me a flyer would get interrogated to why they were destroying the planets trees, smoke in my face would have me tell the person if they wanted to die they should just commit suicide and not take others with them. 

I got home and realized that I'm at the point my routine needs to stay in tact in the morning with nothing planned in advance. If something needed to be done, it was first thing in the morning when I was more in tact. Of course I need and want to go out with friends, but if I plan these things well in advance and have an escape route everything usually turns out okay.

I also realized that I wasn't happy at Starbucks anymore. To noisy and not comfortable. Many of the regulars never returned since the renovation. It just wasn't the same. For a long time  I tried to put a square plug into a round hole, but it wasn't working. I slowly transitioned to Cafe Bunni having my $1.50 cup of tea each day. I've noise reduction headphones so when it gets noisy I stay in my own world with my music. They don't blast the music like McBucks does. At McBucks, they were manic with the volume of the music and asking them to lower it a bit, became a crime against humanity. At cafe Buunni it's at least background music. Noise suppression is extremely important to someone with FTD. Every morning my Routine takes me out of the apartment for a few hours to have my $1.50 cup of tea and hang out in the outside world. Then it's back home till the next day, unless I have a specific plans or I feel like going out. Everything is finding a balance to live in this world with FTD. You need to work hard to find that balance. It just doesn't magically happen. It's amazing how a good few hours set up the rest of the day. 

The following quote is from a fellow FTD patient:
"As out brains develop we learn to filter out sounds. Our home has a wall clock that chimes on the quarter, half and hours, but most of the time we never "hear" it. Same for people who live next to railroad tracks or emergency rooms. Those filters are degenerating with the disease. If my wife drops something that generates a loud crashing sound, I involuntarily jump out of my skin even if I am seeing the objects fall. Learned behaviors like inhibitions rely on filters as well. When disease destroys those particular cells, we act "uncivilized" with bad manners, cutting remarks, or just say the obvious (you must have had a miserable childhood to become such an a**hole), no matter how uncomfortable to others. Sometimes that can be so refreshing." 

Things are always more comfortable at home and we get to stay away from the overstimulation of the outside world. It's hard being around people and keeping up with the world, especially since we're in a different place. I have behavioral issues which affect me and others so there's a need to be home in a serene, safe environment where I stay out of trouble. Even though it doesn't bother me and I'm unaware when I affect others and couldn't care less when I say things, later on I realize how much I'm a pariah. 

I used to force myself to go out and socialize. This caused a lot of confusion and anxiety. Now I'm finding a balance being perfectly happy hanging at home, as long as I'm productive in the mornings. I need to be productive with purpose. Otherwise for me, there's no reason to be........

It's getting close to 9:30am and I'm ready to publish and head home. I'm still being productive and living life with purpose. 


Saturday, December 1, 2012

FTD Support Groups and Medical Centers

There are few FTD specialists in the country, especially if your outside a major metropolitan area. I'm attaching links to the U.S. and Canadian AFTD pages which has a maps to show you where to find help. You can choose either  Medical Centers which have support for FTD or FTD Support Groups for caregivers. 

Please click on the following links:

AFTD - Canadian FTD Medical Centers & Support Groups

AFTD has a helpline 866-507-7222 for any questions you might have about resources and support.

In Australia, the Dementia Behavior Management Advisory Service 1800 699 799 is available 24 hrs. a day for patients and caregivers.
The Australian National Dementia Helpline 
1800 100 500
8:30 - 4:30pm weekdays.

If you can't find a doctor familiar with FTD in your area, interview the local doctors and find someone willing to learn about FTD. If there no support groups for caregivers in the AFTD list, call the local Alzheimer's Association. Your local Alzheimer's association might also have, or know of a support group that an FTD patient can attend. 

If there's no support group in your area, well someone needs to start one. AFTD will help you organize starting one in your area. I wouldn't be writing or would've survived without my support group, Riverstone's Memory Club. It gave me the tools to exist with FTD.

If there are no face to face support groups, there are online groups. 

For caregivers, the FTD Support Forum is a large online group.

FTD Support Forum

There are many FTD and FTD/Dementia Facebook support groups you can join. This is the fastest growing segment of support.  Just put the name in the Facebook search engine. There are also closed private groups.

Facebook is easy to join and takes 5 minutes. If you join, that doesn't mean your a yuppy or your life will change forever. Facebook has gone beyond just being a place for kids and now is a source for meeting others in your position. 

Facebook  Support Groups
Association for Frontotemporal Degeneration
Defeat Dementia
Dementia Aware
For the Kids of Parents with FTD / Early onset dementia
Frontal Lobe Dementia

Closed  Facebook Groups 
Primary Progressive Aphasia Support Group - For patients, relatives, friends of PPA Patients. Medical personal welcome.
Natasha Young:

FTD Patient Support Group - 
For firmly diagnosed FTD Patients
Contact Howard Glick:

Early Stage Alzheimer's / dementia support group - For firmly diagnosed Dementia Patients
Contact: John Sandblom:

*Please share this by tweet/Facebook etc.


Thursday, November 29, 2012

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.


Tuesday, November 27, 2012

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.


Sunday, November 25, 2012

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. 


Wednesday, November 21, 2012

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


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!!!


Monday, November 19, 2012

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. 


Tuesday, November 13, 2012

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. 


Sunday, November 11, 2012

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.


*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. 

Wednesday, November 7, 2012

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.


Monday, November 5, 2012

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.

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.         


Friday, November 2, 2012

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.