DD Defeat

"Cause I am barely breathing"

2011-08-17T07:49:00.000-07:00

"I can't find the air". Talk about a one hit wonder! Who can name another song by Duncan Sheik? Hell, I remembered the chorus, but had to google the artist.
Anyway, I'm still breathing on my own nearly 18 months after I said that I had 3-6 months before going on a vent. Ironically enough, I truly haven't decided whether a vent is in my future.
But I always leave the health update for later in my post, so why mess with good luck, which I still consider that I have, in spite of my bad luck that I got this God awful disease.
Anyway, i started to write this about 10 months ago. Now the title should read...

"Got vent"

In late November, right before Thanksgiving, i aspirated some vomit. For you that are medical morons, aspiration means something from your stomach going into your lungs. That led to Me being intubated, which if you have seen any episode of ER, you've seen it several times per episode. For those who are not ER Aficionados, that means sticking a tube down your throat so you can breathe. They literally do it several times per episode.

The next two Weeks (15 days) were pure unadulterated hell! Not that i wasn't well cared for. Quite the opposite. I fell in love with several nurses and evidently they fell in love with me too! Not that i wouldn't have made it without Propofol (yes, the same drug that killed Michael Jackson). My parents took turns staying with me 24/7. Thank God they are the most AWESOME parents in the world. Can you imagine not being able to talk or move in a hospital with nobody advocating for you? It wasn't practical to have my computer, so we did it the old fashioned way using the paper and letter sheet.
the transition home was quite the challenge. We all freaked out the first few times that we had disconnections. We figured that out and it's really easy if you can find those disconnections. Otherwise it's just packing me around with a ball and chain attached.

General musings.

How many times have you gone to the bathroom, pulled down your pants, skirt, dress, or kilt and sit mindlessly squarely on the toilet? Yes, i realize that the toilet is round or elliptical, but i mean sitting right where you want to sit without any thought. Well I'm here to tell you not to take it for granted any more. You see it's kind of hard to have a bowel movement (polite for taking a crap) when you are straddling the edge of the toilet seat or your asshole is sitting on the back of the seat!
Strangely enough, with the vent, i can't smell anything but very strong smells. I shouldn't have told my dad, but i can't smell him pass gas (fart) so he thinks he's got me by polluting my air but i can't smell it at all! Enough of the caca poopy commentary.
Back to to how I'm feeling.

After getting through the first few months, where i questioned why i had attached myself to this freaking thing I realized that i did it for my kids. They are all so special, in their own special way, but they each need me here to help with their unique problems and challenges. Trevor is going to Cuesta College, right near Cal Poly. Ryan just graduated from high school and plans on going to DVC. Kyle is having his challenges with his freshman year at College Park high school, but that little shit is so freaking smart, that I'm confident that he will turn it around in his sophomore year. My little baby Carly is going to be a freshman next year! Which means one of two things, I'm getting old or I'm living long enough to see my kids grow up.
Enough for now. I promise that it won't be over two years since I write again.
Love you all!

DD
NGU ONCE AGAIN! I think...

Context! / Contrast!

2009-05-27T12:20:00.000-07:00

GENERAL MUSINGS

I am dying... Well that too but I am dying without being able to use the remote control. No longer can I surf the channels or switch back and forth between the quagmire that they call digital tv. I think only half of my constituency (I only used that big word because we're coming off a "special"election in California) will get this. No longer can I turn up the freakin' volume. I apologize if there are a Channel Changing Chicks out there!

I was thinking (I have a lot of time to think) that if I'm never able to walk again then I'll never step in dog shit anymore! Boy do I hope I'm searching for a stick someday to scrape the shit out of my waffle bottom shoes!

You know my Dad is sleep deprived when he is brushing my teeth manually with an electric toothbrush that is fully charged!

Context /Contrast

One of my good friends from work (Keith Zoellner) used to say "context is worth 100 IQ points". For you mo-rons that can't figure out what that means let me give you some context! If you lack the background in a particular topic, context provides you with the necessary information to make you a lot smarter. For some reason I chose to share that with you, but my story has a lot more to do with contrast than context.

A few weeks ago I was having a really bad day. I used to tell people that worked for me (or anyone who would listen, for that matter) that if you never had a bad day then you wouldn’t know what a buenos dias was. Isn't it interesting that when I speak Spanish it comes out easier than English? It must be a sign of the times. At least here in California or Texas or any of those states with multiple cases of H1D1 flu (I didn't want to be politically incorrect by calling it the Swine flu). And now I can now even talk to the nice people that clean my house (now that is politically incorrect!). Boy, I digressed like no mañana ... I'm really stubborn about taking my own advice even though it would serve me well right now.

Health Update

Not so bueno. I'm relegated to only eating pureed foods or soft foods like pudding or ice cream. I'm officially not a food snob anymore (I hate the word "foodie"). Ever wonder what an In 'n Out Double Double pureed would taste like? I'm dying to find out! On second thought... That's a really poor choice of words. Something like "I'm very interested in what that would taste like" would be more appropriate. Anyway, a blender used to mean good times. I never thought I would hate the sound of one.

The good news is that pureed foods and all I'm still holding my weight. Keeping those pounds on is muy importante!

To breathe or not to breathe? That is the question.

A play on Shakespeare's Hamlet. Pun intended. I have included the full quote at the end of my blog. It is alarmingly pertinent to what I'm going through right now.
I have a very difficult decision upcoming over the next few months. It may be sooner, it may be a little longer. It is a decision that only I can make and it is a very lonely decision indeed. The decision is whether or not to pursue artificial or mechanical ventilation.

There are so many factors to consider. It is very overwhelming! I can't fathom the thought of no longer being part of my kids life or never being able to see them ever again.

As a very active person, I also can't fathom the thought of being confined to this fucking wheelchair for the duration of my life. No longer being able to drink anything! I can't imagine eating baby food the rest of my life or as long as I can actually eat. There are so many factors to consider. How long will my parents have the physical and/or mental capacity to care for me? There are myriad financial aspects to consider. On a side note... No, I didn't accidentally leave out the "a" in front of myriad. The proper grammar is to leave the "a" out. It is one of pet peave's when newscasters and writers include the "a" without their editors' catching it. If you didn't know before, now you know.

My breathing scores have dropped rather rapidly since the beginning of the year. I go in for more tests on May 29th. If the doctor's had their way I'd have the surgery tomorrow if I decided to have it done. If you've seen me recently then you may be confused. For all intent and purposes it appears that I am breathing just fine. The problem is that when I sleep or nap my breathing could potentially stop.

I have all these reminders to Never Give Up. A Winston Churchill magnet that quotes him saying Never Never Never Give Up! Hell, my son, Trevor has it tattooed across his back!
I always claimed when this time came I would make my decision based on research in not only finding a cure but finding a way to reverse the symptoms. There are some promising developments but the pace is as slow as molasses in January (ask my Dad about that one).

A very lonely decision indeed! Love ya'll!

ps. If you want to read the Hamlet quote in its entirety, please read on:

To be, or not to be: that is the question:

Whether 'tis nobler in the mind to suffer

The slings and arrows of outrageous fortune,

Or to take arms against a sea of troubles,

And by opposing end them? To die: to sleep;

No more; and by a sleep to say we end

The heart-ache and the thousand natural shocks

That flesh is heir to, 'tis a consummation

Devoutly to be wish'd. To die, to sleep;

To sleep: perchance to dream: ay, there's the rub;

For in that sleep of death what dreams may come

When we have shuffled off this mortal coil,

Must give us pause: there's the respect

That makes calamity of so long life;

For who would bear the whips and scorns of time,

The oppressor's wrong, the proud man's contumely,

The pangs of despised love, the law's delay,

The insolence of office and the spurns

That patient merit of the unworthy takes,

When he himself might his quietus make

With a bare bodkin? who would fardels bear,

To grunt and sweat under a weary life,

But that the dread of something after death,

The undiscover'd country from whose bourn

No traveller returns, puzzles the will

And makes us rather bear those ills we have

Than fly to others that we know not of?

Thus conscience does make cowards of us all;

And thus the native hue of resolution

Is sicklied o'er with the pale cast of thought,

And enterprises of great pith and moment

With this regard their currents turn awry,?

And lose the name of action.

A race against time

2008-09-14T10:58:00.000-07:00

Since the Olympics just finished, I think this title is appropriate. So many of the events are a race against the clock. I'm in a race against the clock, not for a gold medal, but for my life! If you don't believe it check out this article http://news.yahoo.com/s/ap/20080808/ap_on_sc/sci_stem_cells_diseases_4 specifically click on the diagram. It demonstrates the process specifically for ALS.

Health Update

I'm losing weight (I'm back to my college water polo weight, but it’s just distributed slightly differently). I wrote this before I paid a visit to the doctor and I actually gained 5 pounds back! My neck is losing strength. My right arm is losing strength so I'm practicing with my chin mounted joystick. I only have one bloody knee from slamming into my desk. I'm having to take more calories through my tube because eating takes a long, long time. Bottom line, the disease is progressing just because that's what it does!
The good news is that my breathing is stable!

Vacation!

Our family usually goes to the beach for a week every summer. Last year I had my lightweight wheelchair and the rental unit was able to accomodate it. This year I couldn't go but wanted my kids to enjoy the tradition. So they went there and my mom, dad and I went on a Disney cruise! 7 days to Cabo San Lucas, Mazatlan and Puerta Vallarta. We had a great time, but missed the tradition of being with my family.

Rap, Ditty, Poem... Oh hell, whatever you want to call it.

Check it out.

That F***ing Disease

I’ve wrote many an Ode, Rap and many a ditty,
But never one about a disease so, so shitty.

I got this rare disease, named after Lou
And now I can hardly swallow or chew.

I can’t walk, use my arms or even scratch an itch
Mom never told me life would be such a bitch

But there’s humor to be found, whatever state you’re in
So humor here it goes, let the ditty begin

I can’t choke the chicken, I can’t grind rind
The benefit of which … at least I won’t go blind.

I can’t wipe my ass, my parents have that chore
Butt somehow they keep… coming back for more.

Everyone pitches in, to make us stuff to eat
We appreciate it all, even the mystery meat

My parents get groggy, put shoes on the wrong feet
They spill shit all over me, not dad, but yes Deet.

My mind is still intact, my body is failing
At least I don’t have to carry Dad home after sailing.

But I still have hope for stem cells, genes and stuff
As long as the FDA isn’t involved, it may come fast enough

I hang from ceiling, like a flying trapeze
All while my nuts are flappin’ in the breeze

My neck is so sore, I can’t write for long
The medicine ain’t workin’, maybe a hit off the bong?

I very much appreciate the loving care of mom and dad
Except for dad’s farts smell really, really bad

I drool on my shirts, I could use a drool bucket
But I don’t do the laundry, so drool away, f*** it!

ALS may have taken away my bodily condition
But just read the above, I haven’t lost my cognition

A few recently published articles about me

http://stanmed.stanford.edu/2008summer/breath_of_hope.html

http://webba.alsa.org/site/PageServer?pagename=BA_I_am_lou_darren_dent.

Cheers!

DD NSL (Never Stop Laughing!

I'm Alive!

2008-05-06T12:16:00.000-07:00

I haven’t written for quite a while because I haven't had much uplifting material to share. Quite the opposite as a matter of fact. But then it struck me... I'M STILL ALIVE! It's been 2 1/2 years since onset and I'm still kickin' (well not literally, but heck, I'll take what I can get).

So based on that I'll start with a health update.

The Lithium in conjunction with the diaphragm pacing seems to be having a positive impact. The measurement criteria for rate of decline in ALS is poor at best so who really knows?

Anecdotally, I feel fine, although a little more tired. . I can still eat and drink almost all foods. Incredibly enough, I can drink beer faster than ever. I drink a beer in 2 sips. The joke the other day was that I had 14 sips.

I can still talk to my family members who are around me all the time. I had almost completely given up on talking 9 months ago! My legs and neck continue to be relatively strong.

I had a follow up visit at Stanford recently and my breathing scores actually improved from 2 months prior. Being able to breathe is good... Duh, but most people with ALS die because they can't breathe. My diaphragm was working great which means the surgery was a huge success.

Now for the downside. My arms and hands continue to weaken. I now have trouble operating my wheelchair and sometimes need assistance. I am experiencing more shortness of breath which isn't a good sign at at all.

All I can really do is take things (here comes the big cliche) one day at a time. It works but some of those days are rough indeed!

Bugs

If you can't imagine not being able to move your arms or legs very well and you can't talk very well either then you'll appreciate this story. I was at my daughter Carly's softball game on a rather warm spring day. There were insects flying all over. They would land on my arms, legs and head, no big deal. But then one flew in my ear. We were sitting next to Carly's dugout and they were screaming one of their chants. I was trying to tell my Dad that I had a critter in my ear but he couldn't understand me over the noise, let alone my limited speaking ability. A few minutes later my Dad got the bug out of my ear. A moment in the life of someone with ALS.

Another Incredible Golf Tournament

Mix 1 part sunshine, 1 part a great group of people, 1 part lemon drop, 1 part Patron, a bunch of incredible volunteers, and you get an incredible golf Tournament.

There are so many people to thank I'm not even going to try because I'll do an Academy Awards and forget someone and they'll get all upset and we've had enough crying around here lately. I will, however, thank one person... My sister Ramey. She organized this Tournament on short notice all while closing deals for IBM and their house in complete disarray due to a major remodel. I think everyone will agree that it was a well organized, fun Tournament.
That's it for now!

DD (NSB) Never Stop Breathing!

Got Lithium!

2008-02-04T16:39:00.000-08:00

Lets hope it mirrors the results of the Italian study in me!

DD (NGU)

Your Future Looks Bright!

2008-01-19T11:53:00.000-08:00

Panda Express. I got a fortune cookie there that said this. I have it right where I can see it every day. Right on my picture with me Carly and Santa. Yes, I took a picture with Santa this year. It cost me though, because Carly didn't have a red outfit on, so I had to buy her a red American Eagle sweater to do it with me.

Of course it can have multiple meanings... (no, not the picture with Santa, the fortune!)

It can be taken literally as if there is a cure that will halt progress of the disease and maybe even reverse it.
It can mean I can see the light at the end of the tunnel, whether it's the trains headlights, who knows.

Or those who have had near death experiences say that you are supposed to see this amazing bright light!

Whatever the meaning, anyone that knows me well knows that I'm stickin' with the first one.

Physical Update

The diaphragm pacer is working! I have more energy, I am breathing easier and my family even says they can understand me more when I speak. The latter benefit would be equivalent to saying that you could understand the adults better in A Charlie Brown Christmas than you could in The Great Pumpkin. At least the first 2 are making a difference in my quality of life.

Otherwise, the use of my arms and legs continue to digress. I'm still eating almost everything and amazingly enough can actually drink a beer faster and more easily than before!

Lithium?

Who knows? There seems to be some very promising, reputable studies out of Italy that show marked success in halting the progress of and even potentially restoring some functionality, particularly in bulbar onset cases like mine. Lithium is a very old drug used to treat people with bi-polar disorder. But as conservative as the US medical system is, we are struggling to get a prescription for it. If I could talk I'd have no trouble acting bi-polar and getting a prescription. My mom is on it though so by hook or by crook we will get a prescription for it!

Still feeling the love!

It’s been nearly 2 years since my diagnosis, but the depth of the love that I feel from each and every one of you hasn't diminished one bit. I just got this incredible heart medallion from my relatives in Pacifica. It is very special indeed and I have it hung around the frame of the aforementioned picture with Santa.

Golf Tournament

My sister Ramey is combing The Farmer's Almanac for a nice day this spring to hold the 2nd DD Defeat Golf Tournament. It is certain to be as much fun as the 1st one! More details to come as soon as we have a date.

No particular words of wisdom this month except that I have no intentions of giving up or giving in to this horrible disease. Yes, I have good days and bad days but I am staring this disease down and have no intentions of losing, no matter what the odds! After all The Future Looks Bright!

Cheers!

Time to blog

2007-12-03T08:35:00.000-08:00

Hope you all had a great Thanksgiving and have a happy Christmas, Hanekah, or Qwanza. If anyone who reads this celebrates Qwanza please let me know via the comments section. If nobody celebrates it then I can skip it next year and it will save me from having to type it next year. It's kind of like if a tree falls in the woods with nobody around, does it still make a noise?
The holidays bring mixed emotions for many. I still find the traditions of the holidays magical even though I realize any one of these may be my last. For that matter it could be anyone's last, so enjoy them to their fullest!

Can't believe that it has almost been 3 months since my last post! It only proves that time flies when you're having fun. Well, I wouldn't necessarily call it fun but life around here has been interesting nonetheless. I'll skip the gory details.

Health Update

I had my successful surgery at Stanford on October 29th (we moved the golf Tournament to the spring because of the surgery and low and behold it rained that day) How did I know that it rained that day when I was completely out of it? It's called Stanford hospital recovery room hell. The surgery was great but the next 36 hours were painful to say the least. And to top it all off we lost the Big Game! Talk about adding insult to injury.

The surgery placed electrodes on my diaphragm (no not the contraceptive device) the organ that helps you breath. Well I guess both types are closely related to an organ, but I digress. The electrodes stimulate the diaphragm and alledgedly help you breath up to 2 years longer than with the typical disease progression.

Thanks to my mom, I was the very first person to have it in California. They have been using this technique on quadrapalegics for many years but just recently decided that it may have applicability in ALS as well. The surgeon that oversaw my surgery was the person who invented this technique and actually performed it on Christopher Reeves (well we know Superman's fate but it had nothing to do with this procedure) They have been doing the procedure in Cleveland for a while, with great results.

At the same time I had a feeding tube placed in my stomach. So now I have this 12 inch long tube sticking out of my stomach. I'm not shy about sharing it, so if you want to see it just ask. It sure makes drinking shots of tequila easier. None of that brrrr face going on.

Equipment Update

I finally got my souped up permanent wheelchair about 6 weeks ago. I got a very cool van to haul me around in it. Watch out! Now I'm truly mobile. We also had a ceiling mounted hoist system installed in my bedroom. The final piece that we are waiting for is the computer that attaches to my wheelchair and will allow me to talk using my eyes to type on a keyboard. All of these things I am fortunate to have by your generous donations to the Special Needs Trust and the 2 fundraisers that my family members ran. THANK YOU!

This month's words of wisdom:

Trust your instincts. Go with your gut feeling. Trust your intuition. It's almost always right.

Progress in the fight to cure ALS

Not sure if you read the headlines but they are now able to extract stem cells (the building block for all organs, etc. from skin cells. This makes the entire embryonic debate a mute point except they are 5 years behind where they should have been. Hopefully they'll hurry up and figure out how to turn those skins cells into motor neurons! Realistically it's quite a few years out, but you never know. Have to keep the hope!

A beautiful day In Napa!

About 60 people from as far as Connecticut joined the DD Defeat Team for a bike ride through beautiful Napa Valley. The ride was hosted by The ALS Association and raised hundreds of thousands of dollars to help find a cure for ALS. Special thanks go to my sister Kelli who was the team captain for the DD Defeat Team and to Leslie Morrison who led the Skylake Campers, as well as all of you who either rode or volunteered for the race (no matter how hungover you were!).

Cheers!

DD - ATYI (Always Trust Your Intuition)

Strike That!

2007-07-13T18:39:00.000-07:00

I started to write this post from a dour, bleak perspective. After all, it's easy to fall into that trap. This disease is taking its toll on personal and inter-family relationships, finances, and it's finally taking its toll on me. To steal a line from Rodney King "Can't we all just get along?!

But is that really me? To succumb to the horrors that accompany this awful disease? As Borat would say... "that is Darren, pause... NOT".

The wonders and pitfalls of technology

Oh the irony of it all. I wouldn't be writing this if it weren't for some great technology. My next computer will allow me to make and receive phone calls using Skype and some voice generation software. The downside is that it is hard to type fast enough to keep a fluid conversation.

Today's world is one of speed, and technology has driven that. For someone with ALS it is impossible to keep up with that pace. It will take me several hours to write this (not to think this b. s. up, just to type it) .

We are a world of instant access. Very few people have the patience or the time to interact at such a slow pace. It’s not their fault. The world and technology has demanded it of people.

If you read my blog from September last year, I've done a 180. I actually find myself jealous as I watch people communicate via mobile devices. Everyone has one and I feel left out! Oh what I would give to be able to pick up a cell phone and call or text message my wife or kids! But still remember to love the one you're with.

The wonders of Google!

Twice in the past week someone that I knew from 20+ years ago, has wondered what I was up to and Googled me. The fact that they wondered what I was doing after 20 years is incredibly heartwarming to me and really helps sustain me as I battle this disease. The fact that they were able to find me by simply typing my name into a computer demonstrates how much technology has changed our lives over the past 20 years. I wonder what the next 20 years will bring.

Health Update

My mobility has reached a point where I can only walk a few steps with someone assisting me. We are in the process of having a ceiling mounted hoist system to move me around, in and out of my wheelchair, etc. I call it my "Peter Pan" system.

My speech is very limited, although, those who are around me all of the time can still understand many of the words I say. It just takes a lot of time and patience. I'm going to keep trying to talk as long as I can!

New custom wheelchair in about a month, right about the same time as the new computer system. Along with a van to transport the beast.

Misc. Musings

I was thinking the other day... I can't drive and I can't pick my nose. I'm fortunate that I'll never again have someone pull up beside me and catch me mining for gold.

How about those Cal Bears! This is the year. (or at least it better be. I'm running out of seasons for them to make it back to the Rose Bowl)

I love this time of year. Start of the NFL season just around the corner and the Raidas are still in the playoff hunt.

I had better find something inspiring to write soon, or I won't be able to say that next post.

Cheers!

DD

Judgement Day

2007-06-18T07:39:00.000-07:00

NO! My death is not imminently approaching. The title really refers to my observations over the past few months. I've never been a great listener, but not being able to talk has forced me to become a great listener. It's one of those Yin and Yang thangs I mentioned several postings ago.

Man, when you really listen you hear the most amazing things come out of peoples' mouth! Most of the things are questioning or judgemental in nature. Don’t get me wrong I was right there with you when I could keep up with the pace of conversation and am still fighting that inherent urge today.

We've become a society of Judge Judys... One big Westminister Dog Show (minus the owners prancing around in circles)

Every person is made up of two things... Their genetic biochemical make-up and their life experiences (The values and morals that they were raised with) . That's how they make their decisions. Most of us have little insight into that unique combination that makes each individual who they are and why they make the decisions they do.

Let me give you an example:

I abhor George Bush's politics... But who am I to judge or question the decisions that he make?

I know little about his biochemical make-up or his background growing up. For all I know he may have been abused or sexually molested as a child. Furthermore, I've never had to sit in the Oval Office, with the future of the free world at stake, and make the monumental decisions that he is forced to make. So who am I to judge his decisions?

As a society we judge people by the shoes they wear, the cars they drive, and choices that they make in life. They make those choices for the reasons I describe above.

Next time you have an opportunity to question or judge someone for their actions, please join me and refrain. It is what it is.

HEALTH UPDATE

The steady decline so typical of ALS is no less typical for me. Over the past 3 months I have lost my ability to walk un-aided, lost my ability to speak (for the most part), and wouldn't be using this computer if not for some great technology.

I am very fortunate that my swallowing hasn't changed much at all, allowing me to pretty much eat whatever I want (with someone feeding me) and keeping my weight up near normal. My goal is to be the fattest person with ALS.

Breathing is what usually gets ALS patients in the end. My lung capacity has decreased steadily but my diaphragm remains strong. There is also a new study that I'll hopefully be taking part in. They place electrodes on the diaphragm and you hook it up to a Prius several times a day (all but the last part is true) It's shown to maintain diaphragm function for up to 2 years.

Only downside is the surgery is at Stanford. For all I know they'll cut me open with an axe. On second thought... They don't have an axe and it’s not looking like they'll have one any time soon!

I'm also seeing a Tibetan doctor once a month and taking some herbs blessed by the Dalai Lama.

Have also been taking Human Growth Hormone for about 2 months. Hard to gauge whether any of these measures are helping, hurting or completely innocuous.

That's all I know for now. Next time I'll update you on an incredible day at the old ballyard.

DD NJ (Never Judge)

I'm Back!

2007-06-11T09:25:00.000-07:00

I have a new input device that allows me to type without the use of my hands. It’s called a "Head Mouse". No you sickos... It's not a close relative to Richard Gere's gerbil, it’s a way to control the computer just with head movements. It's a precursor to technology that allows me to control the computer using my eyes (eye gaze technology)

Lots to catch you up on. I will do so in a new post later this week.

Cheers!

DD

Early Retirement

2007-03-21T10:58:00.000-07:00

I would have titled this "I'm stopping work due to a terminal disability" but they wouldn't allow that many characters in the Title. Plus "Early Retirement" just has a better ring to it.

Growing up, many of us had dreams of making our first million by the age of 30 and then comfortably retiring at the age of 40. Well, 4 kids later, I accomplished neither, but along the way realized how hollow those dreams really were.

Some of the goals that I did achieve as well as memories and highlights of my worklife are shared below:

Schroeder-Dent Printing
Starting my career at age 13 working at my grandfathers print shop. I worked my butt off, but they paid me $5/hour (in 1978) and grandma made me lunch (she even separated and peeled my pomegranate for me).

Sequoyah Country Club
At the age of 15 I started as a dishwasher at Sequoyah Country Club. I couldn't drive so my dad use to take me and pick me up, sometimes as late as 3:00 a.m. (where were the child labor laws back then when we needed them).

For the next 7 years, through high school and college, I performed almost every job at the club including: prep cook, line cook, busboy, waiter, bartender, maitre'd, lifeguard, and golf pro (thought I'd throw that in for those who know my golf game).

More importantly, however, this is where I met my closest friends that, 27 years later, are still so near and dear to my heart. And even more important than that, this is where I met my beautiful wife Debbie. Man, if the walls of Sequoyah Country Club could talk.

This is also where I gained my tremendous commitment to customer service, because the stuffy, old money members demanded it!

Bay Area Kenworth
When I graduated from CAL (GO Bears!) I took the easy path. A member at the Country Club(one of the cool young unstuffy ones) offered to take me under his wing and work in Sales at his Kenworth Truck Dealership. While it wasn't a glamorous industry, it turned out to be a great first job (out of college). I learned what relationship selling was all about, from the master of relationship selling - Tom Buran.

ExecuTrain
When that industry softened, the technology boom was upon us. I took a sales job opening up a brand new SF office for ExecuTrain. Through hard work and the guidance of another incredible mentor, Rich Karakis, we built a formidable, highly successful software training business. More importantly, I also developed many more lifelong friendships along the way.

MShow.com
With the Internet boom came the lure big stock options. A well funded startup by the name of MShow.com came calling. Web-Conferencing was in it's infancy and with a little luck and better execution it may have been MShow rather than WebEx that got bought by Cisco for $3 Billion.

One of the things I'm most proud of in my career was leading the dwindling Mshow salesforce
through Chapter 11 Bankruptcy and actually continuing to grow sales during that time! Holding the pieces together allowed us the opportunity for a "White Knight" to come along and purchase us. That "White Knight" turned out to be InterCall.

InterCall
While InterCall may not have been the ideal company to climb the proverbial career ladder, it turned out to be a true blessing in disguise. The incredible friendships I have developed and cherish so much are worth their weight in gold. The support and outpouring of love as I battle this disease has been overwhelming.

But the most important thing that InterCall provided was flexibility and understanding that family is the priority. This flexibility allowed me to pursue a part time career coaching my kids baseball, basketball and soccer teams. The network of friends and supporters that I developed while coaching is also playing a huge role in helping me through these challenging times.

Recap
So... In nearly 30 years with 6 employers, I'm very proud of the fact that I've never been fired, laid-off, gotten a negative performance review, rarely had to call in sick, or had a single day without a job since I was 13. It's a good thing I got this crazy disease... I'm ready to retire!

Crab Feed Extravaganza!

WOW! What a truly amazing, special Event. Personally it was very empowering yet humbling for me.

I was able to see and chat briefly with nearly 400 people, some of whom I hadn't seen for nearly 20 years. Many of those people I may never have been able to see again if it weren't for this Event.

When I got up to say a few words and thank everyone for their support, my already weak legs almost buckled when the crowd rose in unison to give me a standing ovation. It will be a moment etched in my memory forever.

This incredible fundraiser couldn't have happened without the contributions of so many people:

- First and foremost my sister Kelli and her husband David who coordinated and procured goods for the entire Event (No jarred sauce for this Event, Kelli made all the sauce herself)
- Father Leo and The Corpus Christi Church men's club who provided the facility, prepared all of the food and organized the wait staff.
- My incredible kids, nieces, nephews and all of their friends who did such a professional job serving the guests.
- Tim Ports of Ports Seafood who donated all of the incredibly fresh, delicious crab
- Southern Wine and Spirits with the help of Bob Klatt and Steven Burroughs who donated all of the wine.
- My old water polo buddy Pete Rogers who donated all of the very yummy Drakes Beer.
- David Conti of Le Boulanger who donated all of the bread.
- One of the most respected baseball coaches in the East Bay, Paul Damhesel, who donated all of the salad fixins.
- Cheryl Lew of Montclair Baking and all of our volunteer bakers for their wonderful cookies.
- To Je-to-the-fe and Mojo Deluxe Band. I wish that we could have kept to our time schedule and gotten this incredible band on sooner. There would have been some great dancing going on.
- And everyone that helped setup, cleanup, run around, etc. I know I've missed some specific names of people that dedicated their time and resources toward the success of this Event.

Thank you for everything!

Next month... an update on HGH.

Cheers!

DD
Retired

The Ever Elusive Plateau

2007-02-11T11:25:00.000-08:00

Low and behold, I woke up this morning and realized that it's been nearly 2 months since my last post. Quite simply, ignoring things like this that I really enjoy doing makes me realize the insane pace that I've been trying to live at while battling this disease. That's where the title of this post comes into play.

For good or for bad American society and culture places tremendous emphasis on growth, development, higher achievement and acquisition of the material trappings that accompany the ascent.

We live our lives attempting to move up the corporate ladder, move from the 1200 sq. ft. house to the 2400 sq. ft. house with sites on the 3600 sq. ft house. If we work hard to become an 18 handicap golfer we're not satisfied until we get to a 10. Toyota makes a great car, but that Lexus would be a nice step up.

As I mention above, I'm not judging whether the propensity to climb is inherently good or bad. Heck, for 40 years of my life I followed the herd, just like most of you... moooooooooo. Ironically enough, whether I like it or not, ALS has brought that to a screeching halt.

The incredibly persistent, never ending but gradual decline in my physical capabilities have left me peddling harder just to keep up. I'm working at everything 3 times as hard, not to ascend, but just in an effort to achieve an increasingly elusive plateau.

Not trying to move up the corporate ladder, but trying to continue being able to work at all.
Not moving to a newer bigger house, trying to keep the one we have.
Not working to lower my golf handicap, just hoping that I can still play miniature golf with my kids.
Not struggling to afford the Lexus, struggling to keep my independence by being able to drive at all.

At some point, as hard as I may try, the desire to find that plateau gives way to the relentless nature of the disease. In other words, maybe it was feasible in the past to peddle harder in order to keep up but, unlike most of the riders in the Tour de France, there aren't any performance enhancing drugs that will allow me to keep up with the pelaton. I'm slowly but steadily being forced to succumb to the reality of the disease (don't read this as giving up, because I will Never Give Up!).

Which is a perfect prelude into my next topic...

HGH

Around the time of my diagnosis, Human Growth Hormone (HGH) was a hot media topic; Mainly, because of it's alleged connection to performance enhancement of some of the world's premiere athletes (primarily baseball players).

I thought to myself...how ironic would it be if HGH, a glaring black eye on the great American pastime, could come full circle and help slow progression of the disease that's named after one of it's most celebrated stars (Lou Gehrig)

With absolutely no medical basis for my "hunch" my mom and I started researching it. We found an MD in Chico, CA that has had ALS for 10 years and feels as if his injections of HGH have allowed him to find plateaus in the progression of his symptoms (with solid biological reasoning supporting his assertion). We also found some promising results from laboratory studies on the potential of HGH as a drug therapy for ALS.

The problem is that there are no existing clinical trials based on HGH. We're attempting to find an Endocrinologist that is willing to prescribe HGH for me to see if it helps. That's proving to be quite a challenge in today's litigious world.

I will keep you posted on the progress. My ultimate goal is to read the following headline in the SF Chronicle

"HGH Represents Splash Landing For Lou Gehrig Victims"

Until next month...

Cheers!

DD

Yin and Yang

2006-12-06T17:51:00.000-08:00

Happy whatever you celebrate!

I was looking back through my blog and don't believe I mentioned yet that this f***ing disease really sucks! OK, there, I said it... lets move on to the topics of this month's thoughts.

Now I'm no Chinese philosopher by any stretch of the imagination, but I have always believed in the physical balance that exists in the universe and am believing more and more in the spiritual equivalent.

So here's my top 10 list of examples of how the positive and negative balance themselves out when you have ALS

I can't do the dishes anymore, so I don't have to do the dishes anymore!
Ditto on the laundry and vacuuming!
Debbie and I would never have been able to go to Europe until the kids were raised, but we got a chance to take the trip of a lifetime because of my disease.
I can't fully dress myself anymore, so I get to spend special time each day with my kids who help dress me.
I get to see my parents almost daily!
I can't assemble all of those frustrating Christmas toys with 100 pieces and 25 decals, so I don't have to!
I can't cook anymore, but I can teach, and my oldest son Trevor is becoming a great cook!
My balance isn't great anymore and my speech is still slurred, but nobody ever knows when I'm drunk!
Nobody ever lets me pay for lunch!
And at the top of the list... I love Dungeness crab, but can't crack it on my own anymore. Everyone cracks it for me and I end up with this nice pile of incredible lump crab.

The list could go on and on, but I think you get the picture.

Thanks Mom and Dad!

As I continue down the path of this disease I have to thank my parents for doing such a great job of teaching me to be adaptive and being able to adjust to any situation. I'm forced to adapt and adjust how I do things every day and the ability to do so is coming in really handy!

Physical and Drug Study Update

I was in a drug study from April through October and found out that I was on a low dose of an experimental drug called Ritonavir. There was a higher dose as part of the study, but it was making people worse so they stopped that part of the study. Based on the fact that a high dose was making things worse, I decided against continuing to take the drug.

Shortly after I stopped, my rate of decline accelerated. Whether it's coincidental or not, we'll never know, but I went back on the drug just in case.

We're shooting for some additional studies in mid to late 2007., but they never seem to come soon enough.

Physically, my balance isn't great, my hands continue to worsen, but the biggest pain in the neck, is the pain in my neck (sorry for the really bad pun) The muscles in my neck and shoulders are weakening and they have to carry around that pea brain of mine that fill that big old anvil head. We're trying to develop a more ergonomic position at the computer because that's the root of much of the pain.

Europe

The details could take hours to write. Everywhere we went was special in its own way. We were so lucky to have incredible hosts and friends in London that made us feel at home but also carted us around London. Thanks Helen and Jerry! It was also great to spend a few hours with the InterCall folks in Bracknell. They are going to rock the web world in 2007!

Our 24 hour surprise trip to Paris was highlighted by our lunch at the top of The Eiffel Tower, our stay at an incredible chic Hotel and a very memorable dinner that night at a small intimate little bistro. All of this was made possible by Jen Lansink, her family and her fiance' Alex. Can't thank you enough!

If you haven't been to Italy you need to go. Florence was incredible, highlighted by a 10 hour tour of the Chianti region of Tuscany made possible by many of my dear friends at InterCall. I promise I'll get the pictures up soon!

Lake Como was everything people said it would be and the drive to Bellagio was an incredible experience unto itself (Think of a windy, super narrow, 2 lane road on the side of a cliff).

Venice is so incredibly unique and I was really fascinated by it's historical place in the world during the mid 1000s. If you like to shop and eat, go to Venice!

I'm going to wrap it up now. Thanks for everything from every single one of you. I love you all!

DD (ALFTY) Always Look For The Yang!

We laughed so hard, tears ran down our legs!

2006-11-06T10:21:00.000-08:00

As I sit here hanging out in my Dolphin shorts (how's that for a disturbing visual flashback from the 80s) I have a bunch of updates on my condition, continued stories of incredible support, as well as excitement over our upcoming trip to Europe.

Progression of Symptoms

While I've tried to remain positive about this disease, a stark reality is starting to surface. Over the past month I've experienced some rapid declines in my ability to function normally. Both hands and arms have weakened significantly, to the point where typing this has become much more difficult.

My legs, while still strong, aren't as steady as they once were and I've had a couple of minor falls. Thank god for my hard-as-an-anvil head, because my arms aren't doing their job catching me.

My speech is still about the same, but I find myself running out of breath when I talk a lot (Whew, maybe we finally figured out a way to get him to shut-up).

I've started to experience the Pseudo Bulbar Affect, which is a common sypmtom of ALS and leads to uncontrollable laughing ( or crying). Thank god it's mostly the former. This can be very funny as well. While at my sister Ramey's house, I started laughing uncontrollably as Mark and I were discussing a particular topic. Mark knew that I had a funny comment to make, but I couldn't spit it out because I was laughing too hard. Mark continued to laugh uncontrollably as well. As Ramey came in she asked Mark what was so funny, and he replied " I don't know yet", which obviously threw us all into deeper fits of laughter.

These changes continue to make me realize how important it is to take advantage of the things I can do in the present, because those same things may be fleeting in the future. How I wish I could do all the things I could do just a few months ago!

Whether you're healthy or not, just ponder this a minute and make sure that you're doing the things today that you want and can do, because you may not be able to do them or want to do them tomorrow.

Support

My family along with the ever amazing "Call Girls"* put on the most incredible golf tournament that I have ever been to. The common theme that I kept hearing was "when can we do this again?"

These things take a tremendous amount of time and planning and everything was so perfect about that day. Not to mention the fact that it was a very successful fundraiser. Many thanks go out to everyone that made this day special... All 150 of you!

I know that I keep saying this (it's like I have Alzheimers instead of ALS) but it's important to reiterate how much this loving support means to me and how it keeps me going. With all that's bad in the world, I have the incredible opportunity to see all that is good in unselfish love, caring, and generosity every single day.

* For those of you who don't know the origin of the "Call Girls" moniker, I think I should enlighten you. No, I didn't get introduced to these incredible women by Heidi Fleiss. The name "Call Girl" is just an abbreviated version of "InterCall Girl" that Mark Stevens coined after the ALS golf tournament in July. As individuals and as a group they are all very special. If you hear me referring to the Ex-Call Girls, those are the ones that broke away from the profession as a "Call Girl" but are still very much involved in supporting my fight.

Europe here we come!

AttenderÃ² il til ritorniamo dare un riassunto pieno del nostro viaggio, ma partiamo sul 10 per un 12 giro di giorno del Regno unito e su Italia. Dopo che il tÃ¨ con la Regina, della Birra Chiara di Boddington ed il Pesce e Scheggia dirigiamo a Italia. Tra i culmini sarÃ un giro di vino di Toscana; l'origine del piÃ¹ bel Chiantis. Se siamo fortunati che troveremo alcuni fagioli di fegato e fava per andare col nostro vino.
Da lÃ siamo diretti a Como di Lago, descritto da Caen di Erba come l'il piÃ¹ vicino pensa al Cielo sulla terra. Poi abbiamo 2 giorni a un piccolo hotel favoloso in Venezia.

For those of you mere mortals who don't speak fluent Italian, here's the english version.

I'll wait til we return to give a full recap of our trip, but we leave on the 10th for a 12 day tour of
the United Kingdom and Italy. After tea with the Queen, some Boddington Ale and Fish and Chips we head to Italy. Amongst the highlights will be a wine tour of Tuscany; home of the finest Chiantis. If we're lucky we'll find some liver and fava beans to go with our wine.

From there we're headed to Lake Como, described by Herb Caen as the closest thing to Heaven on earth. One of those aforementioned "Call Girls" claimed that she cried when she had to leave there.

Then we have 2 days at a fabulous little hotel in Venice.

Can't wait!

Love you all! I've got my Dolphin shorts on, I think I'll go for a jog!

DD - NSL (Never Stop Laughing)

Love The One You're With

2006-09-20T09:44:00.000-07:00

OK… I must officially be an old fart now. I always fathomed myself as one of the hippest dads around. When the kids went through the skater rock phase I was right there with them listening to the likes of Linkin Park, System Of A Down, etc. Being an Oaktown Boy it’s right up my alley to Lean wit it and rock wit it, or Party in Da Club with 50 Cent during their current rap phase.

But one thing that drives me nuts about the new generation of teenagers is that they can’t seem to follow the famous words of Crosby, Stills, and Nash…and “love the one they’re with”

I’ll bet miss manners would have a field day with this topic, but it’s clear when observing today’s youth, that it’s never about really being “present” with the people you’re physically with. It’s all about who’s on the other end of the cell phone, crackberry or AIM session.

I refer to it as a generation gap, but who’d they really learn it from? They learned it from us! In today’s business world, the name of the game continues to be productivity increases. That’s what continues to fuel our massive economy and keep things afloat even when other economic fundamentals are in trouble.

Who hasn’t been to lunch with a friend or colleague only to feel like you’re playing second fiddle to a 2”x 4” device? All I can say and plead with you to do is turn the damn thing off. Give the poor thing a break every once in a while. Be “present” and love the one you’re with!

Spending more time with family and friends

It’s so easy to get caught up in the day to day hassles of life that it sometimes seems like a chore to organize get-togethers with family and friends. Since my diagnosis, I’ve had the good fortune of other people being proactive about organizing gatherings. Whether it’s an ALS Walk, an afternoon sailing on the bay or just a simple dinner, it has left me wondering why I lost sight of this and didn’t make it more of a priority in the past. It’s definitely worth the time invested to stay in touch and spend time with those people that enrich your lives.

Fundraising Fanatics!

WOW! I am absolutely amazed by the turn out and support that Team DD Defeat received at the ALS Walk in Oakland. More than 50 people walked in my honor and raised close to $30,000 to fund ALS Research. What an incredible feeling! Thanks Mom, for being the team lead.

While the Oakland walk was the largest, I’ve also had people walking in my honor all across the country from Chicago to Denver. Thanks so much Jody Bartlett and Team from Chicago and Dawn Tieken and Kelly Mark and team from Denver for your incredible continued support. You really are making a difference!

My sister Ramey along with Julie Rutherford, Kelly Mark, Christie Schenone and so many other people are coordinating a golf tournament in my honor to be held October 23rd at beautiful Moraga Country Club. Thanks in advance for all of your efforts. It’s shaping up to be a great event.

Information and a sign-up sheet will be posted to the http://www.darrendent.com website shortly.

Cheers!

DD (NGU)

Compromise

2006-08-08T21:00:00.000-07:00

It's been about a month since my first post and I'm thinking that a monthly update is a good interval so here we go.

It's vacation time at the Dent household. Spent an incredible week at a beachhouse on the California coast, a weekend up in the mountains above Napa Valley and am headed up to the Sierras this weekend and to Echo Lake (god's country as my dad calls it) all next week.

Is there anything better than watching the dolphins parade across the surf, playing golf with my three son's (Carly doesn't play yet), or just relaxing and enjoying a great meal and a few adult beverages with close friends and family? I think not.

The progression of ALS means there are certain physical things that you have to compromise, but it's certainly not the quality of relationships that I have with family and friends. And it's certainly not about compromising the values and morals that make me who I am. It actually makes them stronger and the relationships with family and friends, that I value so much, are growing stronger every day!

I'm nearing the end of the initial drug trial that I initially enrolled in and, with the incredible support of my mom, we're actively researching new studies and trying to make the right choice for the next one. It's a bit of a "crap shoot", or more like an educated guess, but I've always loved to gamble and I'm sure that I'll hit the jackpot somewhere along the way.

There are some great developments in research, including some gene therapy that looks promising as well as some combination drug therapies that are showing positive results in the lab.

My left arm is continuing to weaken and I'm beginning to feel a slight loss of strength in my right arm, but all that means is that I can't hit a golf ball quite as far. Where there's loss, there's also opportunity. I've been meaning to work on my short game for years and now I finally have the impetus to do so.

The fall brings several new fundraisers. The Walk to Defeat ALS on September 17th in Oakland (I know many of you are also participating in local walks across the country as well.. THANK YOU), and a golf tournament in Moraga on October 23rd. These events are a heck of a lot more than just fundraisers, they are an incredible opportunity to spend time with people that I care about the most.

Thanks again for all the incredible support and encouragement over the last 6 months. I'm in this for the long haul and know that all of you will be there when I cross the finish line.

Cheers!

DD (NC) Never Compromise

2006-07-13T15:01:00.000-07:00

Greetings!

If you've reached this blog, most of you probably know by now that in March of 2006 I was offically diagnosed with ALS (a.k.a. Lou Gehrig's disease). For those of you who are not familar wth ALS, here's a quick recap of what the disease is all about. For more detailed information please go to www.alsa.org

What is ALS?

Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. Yet, through it all, for the vast majority of people, their minds remain unaffected.

If you read the paragraph above the prognosis for a heathly, happy future seems rather grim. Based on that you may find it odd or even hard to believe that I'm doing fantastic!

Yes, my speech is a bit slurred and I have trouble eating and swallowing some foods. Yes, weakness and degradation of the motor skills in my left arm have made it more difficult to do some basic things and to excel in some sporting activities that I was once excelled in.

But those minor inconveniences today are all balanced by the incredible experiences, relationships, and outpouring of love and caring that I have experienced since my diagnosis.

I think that all of us (from the CEO of a Fortune 500 company to a day laborer and everyone in between) carries some weight or burden of insecurity around in their life. Am I a good freind, son/daughter, father/mother, husband/wife, co-worker, employee, manager, teammate, coach, etc?

It's hard to ever answer that question until a crisis like this presents itself. Ultimately, based on the the overwhelmingly positive response I've seen from everyone that I have close relationships with in my life, my diagnosis has helped me validate and narrow the above question down to 2 answers:

A) I truly am a good freind, son, father, etc.
B) I'm doing a heck of a job fooling everyone!

Whatever the reality is (probably a combination of A & B above) not everyone has the opportunity to experience the kind of love and support that I've experienced before they pass on. For that I'll be forever grateful. Without it, I probably would be wallowing in sorrow and misery, but with the support and dedication of so many people that are reaching out to help me, my family and the ALS cause in general, how could I possibly not find tremendous strength and inspiration in that?

I'll continue to update this site on a regular basis so that you can check in on the progression of my disease, I can share stories of inspiration, and help communicate news about how you can continue to help in the fight to find a cure for ALS.

Cheers!

Darren Dent
NGU (Never Give Up)