Friday, February 20, 2009

ALS-TDI

Hi All,
Just a quick note to let you know that Heidi now has a page on ALS-TDI called "Hope for Heidi."
There are lots of different organizations that work on ALS issues and help people with ALS. This is the one that we feel is most likely to find a cure or effective treatment the fastest by virtue of their methodologies. In a nutshell, while they are involved in researching all possible treatments and answering questions for people affected by ALS, they are primarily focused on determining whether any of the thousands of existing, approved drugs show any efficacy in treating ALS. For those of us that are dealing with this right now, we don't have time to wait multiple years for clinical trials and FDA approvals on new treatments or technologies.

The company was founded by Sean Scott, who we had the opportunity to meet last year in Hawaii at an event hosted by the Queen's medical center in Honolulu. Sean's family had a history of ALS, and though he seemed to be in perfect health when we saw him just one year ago, in the mean time he was diagnosed with ALS and passed away about two weeks ago due to complications associated with the disease. This was a shocking reminder to us how deadly this horrible thing is and our best wishes go out to his family and to the whole team at ALS-TDI because we understand. Sean was a Dynamo and we felt privileged to meet him.

In our case, ALS-TDI makes the most sense, though there are many worth causes out there.
Here's a link to the Hope for Heidi page:
https://hopeforheidi.alscommunity.org
Peace,
Bill

Thursday, February 19, 2009

Thank you and a quick update:

It's been a while since I did any "housekeeping" and since the readership of this blog is growing, I just wanted to take this opportunity to do so. First of all, Thank YOU! Thanks for reading, thanks for commenting and thanks for sharing the blog with anyone you think might be interested or helped. Your support is what is getting us all through this and I can't really thank you enough. I am humbled in the presence of such wonderful people.

The way this works is the newest post is first on the blog, so if you want the full story, you need to go back to the beginning. You can do this by clicking on the "archives" on the right side of this page. You might need to scroll down a bit, but look for the oldest date and go from there.

Heidi is brave. She decided to post about her condition to her Facebook page, and anyone seeing her new info will now know about what's going on with her. She may have pointed you here from there, so welcome to those of you that find this from there. Heidi's had a bit of a spark lately and i'm so proud of her for being strong in the face of this dispicable circumstance.

Welcome, also to those of you who find this from anywhere else, as now the blog has been visited almost 1600 times from people in 10 countries including places like Guatemala, South Africa, Japan, Singapore, England, Germany and Australia. Of course, the bulk of those visits are coming from the epicenter of our little earthquake, right here in the Denver, CO area.

Many of my friends, besides their obvoius concern for H, ask me how I'm doing, so I want to assure you all that I'm doing pretty well. This is not easy, of course, and I have my down days, but I've been working on my business, writing a lot and working out and these things seem to keep me sane. I'm learning as much as I can about how to take care of H going forward and sometimes these research escapades are very painful because they involve hearing other people's stories that have gone through this and it sort of "shocks me back" when I read the words of those that have already passed or words of family left behind. As I've said to a friend recently, I have to take this in sips. Luckily for me, I am good at sips, since I like wine so much.
:-)

Also, many of my friends have lost their jobs and given the breadth and depth of these economic problems we have, that you may also have been in some way affected. My heart and hope goes out to all of you that are having problems of your own. Stay strong.
Peace, B.

Sunday, February 15, 2009

Ok on the sickie front...

Well, this has been a week to forget, but with a little to remember. Unfortunately, Nana had to spend from Wednesday through today in the hospital (It's Sunday night) and David was in there with her. We saw them (from somewhat of a distance) this evening to say goodbye as they came to pick up their stuff and they don't leave Denver until Tuesday am, but all things considered, we all felt like this was the best course of action to protect H from any bugs.

So far, knock on wood, I think we have dodged the major bug, and Heidi is feeling good tonight. Nobody here is sick. I realized yesterday, when I felt like a million bucks that I REALLY did feel junky on Thursday and Friday. I'll do a massive sani-clean of the downstairs area tomorrow and hopefully we will have staved off the nightmare that would surely follow H catching a cold or the flu. As it is, she really can't cough with any strength and that is a scary situation.

On the other hand, she's been feeling pretty good and I feel like I've noticed a little bit of "extra" movement in her legs when I put on the pants, etc. Maybe it's my imagination, but maybe the broccosprouts are working! Just maybe the roller coaster is going up a bit.

So we have been continuing through the video project and it's fun to see the girls when they were little and it's fun to see them seeing themselves when they were little. We watched about an hour and a half tonight of video that included our Hawaii trip in 2000 when Rachel learned to eat sand and crawl up through Shelby's 4th birthday and the birthdays, Easters, Thanksgivings and Christmases in between. It's interesting to see their personalities then and reflect on them now, because it seems that their general characteristics have not changed all that much. From Shelby singing "Tomorrow" at the top of her lungs (with Aunt Jacquie also singing at the top of HER lungs) to Rachel at about 1 and a half holding Jillian and feeding her a bottle when she was about a week or two old. That is so Shelby and so Rachel too. We finally got to Jillian being in the picture...thank God we actually have video of her. I know too that we are coming up upon the "lost years" from 2004 to 2007, where we took ZERO video of anyone. That almost seems like a crime now.

Let this be a lesson to us. Take MORE video! Especially now that it's all digital and we can chuck the junk with the click of a button.

I also want to take a moment to thank everyone that has been helping out. We still get meals three times a week from people in our community of friends and I hear that there are not enough days on the calendar for everyone to bring meals that want to. Also, the lunches and the hang out time that happen weekly are awesome from many perspectives and certainly help break up the monotony of H's days. I know everyone wants to help more, but there is only so much anyone can do right now and we need our time to chill too. You are all amazing and without you, we would be in a world of hurt that I can't imagine.

We have had a lot of visitors lately and right now, with no one officially "on the books" we feel like things will get back to somewhat of a semblance of normal. While we love to see everyone, we also need time to de-compress so this will be good. Soon, I'm sure, we'll be aching for company again.

I have also decided to write a book. This has been a goal of mine for a long time, though I've never pulled the trigger. Always something seemingly more important to do. The night that Heidi stayed at the Hilton with K to stay away from the bugs over here, my one night to get a lengthy string of hours of sleep put together, I woke up at 3:15 in the morning with an inspiration. I rolled around for a few minutes begging for it to go away, but as these things have happened to me during my life, I know that getting back to sleep is a pipe dream, so usually I get up now and write whatever it is down to get it out of me. If I don't, it feeds on me vs. the other way around. It's strange, I know, but that's how I feel when it's happening.

Over the years I have woken up with full songs in my head... the lyrics, the music, everything. I don't know how to read or write music, so those have been lost. I have woken up with full plots for fiction crime novels or other stories clearly spelled out from start to finish, but I've not gotten up and gotten them laid out to a point that I could fill in the gaps with creative writing, so those too are probably gone.

Given my need for creative and emotional outlet right now, I couldn't let it go the other night, so off I went. I wrote until about 6:15 and then, knowing the girls were going to be up in about 1/2 hour or less, went back to bed to A) try and get some winks and B) to be in bed when they woke up so as not to freak them out, since I hardly ever am. :-)

The other day I saw a speech by Elizabeth Gilbert that she gave at the TED conference recently. I have not read her book "Eat, Pray, Love" (though It seems like almost every 30-40 something woman has) but her speech was very poignant to me. It was about the view of the "creative Genius" over the millenia and how it was once viewed as a divine thing to "have" a Genius, which was an external visitor with it's own agenda and ability to come and go as it pleases vs. the more contemporary view that someone might "be" a Genius, a much more dangerous license to floor it on an egotistical autobahn.

Call it what you will, I totally get what she was talking about. It is not every day that we are visited by an inspiration, and when we are, we should appreciate it and capture it if we can. Give it a chance to become something other than a dream or a whisper of a song that drowns in the mornings first cup of Java.

In any case, thanks to the many of you that have encouraged me to write. I'm working on it with no idea how long it will take or whether or not it will be any good. But it will not be inside of me, feasting on my brain. Hopefully it will be out there allowing others to feast on it.

I've already got a name for the book. It was the thing that woke me up at 3:15. But like my boy Billy the Kid Shakespeare once wrote "What's in a Name? That which we call a rose by any other name would smell as sweet." I think I'll write for a while and see if I've got a rose on my hands or a huge slice of Noni fruit. (see it here on the right side of the page: http://billshiblog.blogspot.com/)

Peace,
B.

Thursday, February 12, 2009

Today...ugh and an Ironic tidbit...

First the Ironic Tidbit...
I put ads on the site to help anyone dealing with this disease also potentially find answers since the ads are pretty darn relevant to the content. Believe me, it 'aint putting the kids through college, so far, I could not buy one of you a latte' with my revenue share. The ironic thing is that when I see an ad on the site when I'm reviewing my post (usually finding typos and sometimes things that make NO sense at all), I sometimes would like to click on it and see what's behind it because it's relevant to ME! The only problem is, if I click on it, Google will disable my account because you can't click on ads on your own site. I'm not bagging on them, their policy makes perfect sense because people might just sit there and click on ads all day on their own site to try to make money. This, of course, would not work because they have technology that prevents this from working. It's commonly known as click fraud and is against the law. The irony is that I might be the PERFECT customer for some of these stem cell advertisers or whatever.

On the other hand, this came to my attention overtly the other day when a friend sent me a link because he thought I'd be interested in a stem-cell clinic and it was from an ad he found on the blog. I guess the universe can work perfectly around situations as needed.

OK, on to my next rant...so here's the world I live in today... H's mom came into town and promptly got sick, maybe from something on the plane flying in or a bug that daughter R had. After a 2 day "house arrest" in the guest suite (a.k.a. the basement bedroom) she's now in the hospital with bronchial pneumonia and the flu. Now I don't feel that great and don't want to get H sick so I have asked H's friend K to take care of her tonight in a room at the Hilton nearby. Another friend is running her gear around to her after bringing us dinner and I'm babysitting (a.k.a Parenting) my 3 girls, one of whom came home from school sick today...EGADS! This really blows.

I'm about to put a moritorium on out of town parental visits because there seems to be a high probability of them getting sick. Last summer, my Dad came into town and wound up in the hospital all week, culminating in a shiny (I assume) new pacemaker for his ticker. Let's see, if H's dad comes to town and gets sick, then we are 3 for 3 on out of town parental visits and I will be "assessing the situation."

On the serious side, I have a very real fear right now that if H gets this, she will not be able to recover because she can barely cough. It honestly scared the sh** out of me today. I have been spraying Lysol all over the house, and wiping things down with antiseptic wipes. I feel like friggin' Howard Hughes (minus the foot long fingernails and random bottles of pee around the place.) I would scream HELP! but I don't think there's anything anyone can do and that sucks too. Thanks for humoring my little vent this evening...at least that helps a little.
B.
PS, I know I'm ranting when I look back at my post and it has lots of parenthesis, quotes, a.k.a's, i.e's and such, so sorry.

Wednesday, February 11, 2009

This History of ours...

Well, we are in the process of going through our old video tapes and converting them to DVD's so we can actually watch them on occasion. We have also gone thorough the old photos that were stored in boxes and are well into the process of getting them in to albums chronologically. It's one of those things that Heidi "knows" will not get done without her, and I'd have to say that she's probably right. It's also one of those things that is easy to put off if you don't have a certain level of outside motivation to work on...it's not exactly getting food on the table, watching over homework, trying to keep the house somewhat presentable, shuttling to practice or doing laundry. Once all those things are done it seems like some level of recreation should be in order and organization of videos and photos is not the first thing that comes to mind (for me especially.)

In any case, it has been fun to see the old videos and re-live some of the awesome memories that we made going back to just before Shelby was born 11 years ago, when we actually invested in our first video camera.

This technology upgrade process is one of those things that I recommend that you do at some point and here are a couple of appropriate times, potentially, for you.

1) When you are really mad at your kid for one reason or another. This is probably going to happen when they are older and getting more independent and rebellious. When you go back and look at the unadulterated pure love that is so obvious between a one year old and her/his parents, it really can help put things in perspective.

The love that you share with your kids is something that is unique and has developed over a long period of time. Sure, you might get mad at them, or they might get mad at you as they get older, but wow, seeing the joy on a baby's face as they crawl for the first time or take their first steps is something that grounds you and puts you back in the core of where your relationship comes from.

2) If your kid or teenager is mad at you, sit them down and show them the love that you have always had for them with these old movies, and one that is still there, even if you won't let them do whatever it is that they want to do at the time. One of H's obvious favorite things to do when S was a baby was video her doing whatever while I was at work. Documenting some little thing she could do today that she couldn't do yesterday. Semi-comical first-time mom type stuff. What I was struck by was the amount of times she said "I Love You" to this child starting when she was one minute old.

Here's the funny thing...she couldn't understand you then, and you still told her. Well, when she's begging to stay out till 10, or 11 or whatever she also is not going to understand you or believe you love her, but that never stopped you before!

3) Maybe you are already past that, and they have moved out, off to college or whatever. Going back and re-living these great times will certainly bring tears of joy and probably some loss to your eyes, but if you can pop in a DVD to get your fix when you are lonely, it will be worth it. Also, when they come home from school or over for a visit with a new boy or girlfriend, you can easily embarrass them and potentially scare or endear the significant other if you choose your disc wisely. ;-)

4) Well, as it is with our situation, sometimes sickness or loss prompts a need for organization and fuels sentimentality. These memories are so awesome for us to have at our easy access and H can watch them with the kids as things progress and we can all have a laugh or a cry. The ability to re-live the memories will reinforce them for the kids as they get older, and because our tapes have been left for so long in the dusty storage area in many cases it will be the first time that they see themselves being nurtured and cared for by us (and especially H.) I expect this will have a lasting impact on them through the years.

Of course, I hope it never comes to that for you, but whatever the case, it is worth the "hassle" of getting it done.

So, I updated my Facbook status about this process last night and a friend asked me how I was doing this. It's really not too hard and probably worth giving a brief description on. We bought a Panasonic DVD Recorder (model DMR-EA18) and connected our VCR to it and It to the TV. Our old video camera has an adapter that you can put the little tapes in to make them play in a VCR, so we are going through them one at a time and recording them to DVD-R's. This Panasonic unit that we bought has multiple inputs, so you could connect it directly to a camera that has a playback mode, or any old system that you have. If you have film, God help you, but you could set up up a small video recorder on a tripod, point it at the wall and roll the tape to record on your camera, from there you would follow the above path.

I'm sure as we move through the tapes, we'll notice that we didn't record as much, and now, even though we have a HD recorder with 80 Gig of RAM that we can put directly on H's Macbook, we usually only break it out for "big events" like music shows or sports games, or whatever. We did get a lot of video from our Hawaii trip last year and Heidi is working on editing that into something that we can actually use on a regular basis as well.

Peace out for now. I need to talk about the "rife machine" for those of you that have heard about it and are thinking about one, so I'll probably blog on that next. B.