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
Friday, February 20, 2009
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.
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.
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.
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