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)