"Cause I am barely breathing"

"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!

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!

DD

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

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!

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!

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

DD (NGU)

Your Future Looks Bright!

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!

DD

Time to blog

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)