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!