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!