For those of you interested, but not on Facebook or on FB, but not in the group, we now have 118 members in the Ironman for Heidi group. Steve cooked up a contest that I blogged about here:http://alschronicle.blogspot.com/2009/08/fun-fundraising.html
and the FB group is here:
http://www.facebook.com/inbox/readmessage.php?t=123792910115#/group.php?gid=140579306281
I don't know if you are not a member of FB whether you can follow the second link and see/join the group. It may only be for people with FB profiles/accounts.
Steve and Laura are on the road...headed Victoria for the Ironman. Here's his first update from the road...good stuff, and some tips of what "not" to do. We are with you in spirt Steve and Laura. Just tell me what "plyometrics" is...or is it are? No clue...
Thanks for the update Steve, fun stuff! Keep it coming!
=====Begin Steve's update=====
Ironman for Heidi daily (ok, somewhat daily) updateTyping from somewhere north of Weed, CA
-- Saturday, August 22, 2009At 9:00 a.m. this morning, the Ironman for Heidi team was packing the car, preparing for the long drive to Penticton, for Ironman Canada. At 9:01 a.m., the Fed Ex man came flying down the street, screeched to a stop in front of the driveway, and delivered the last piece of baggage -- the Ironman Canada speedo. Like clockwork. Nothing stands in the way of the Ironman for Heidi train.Eugene, OR -- Later that dayStopped in at Home Depot to buy Off and some mosquito netting for the first night of camping.
Team Ironman for Heidi were both sick of being in the car all day, so Laura decided it was time to get in some training. We did a quick 3 mile run through the industrial section of town -- not really a triathlon crowd. Laura was getting catcalls from the locals, though I was looking pretty good in my compression socks, so who knows who they were whistling at really. After the run, I joined the other shoppers watching Laura do 15 minutes of plyometrics and push ups in the parking lot. We found a campground around 8:30 p.m. I’d be lying if I said it was beautiful, but beggars can’t be choosers. Laura reminds me that we need to be grateful for what we have and to stay positive, and she’s right. What great showers!
We moved all the luggage into the front seats and set up our sleeping bags in the back of the FJ. With the luggage blocking our side doors, we cleverly climbed in through the rear door and shut it before turning in. Around 1 a.m. I noticed Laura rustling around -- time for a trip to the potty. Unfortunately, the rear door doesn’t have an internal latch. I managed to McGiver us out of there in the nick of time, but that’s going to be a continuing problem if I don’t figure something out soon. Wilsonville, WA, 9:30 a.m. --
Sunday, August 23, 2009 Minor glitch during our second stop for Starbucks this morning. The FJ Cruiser has cup holders in the doors -- very convenient. Before you climb in, you can put your Grande coffee in the door so you don’t spill on yourself. But there’s always a catch. I jumped in, slammed the door, and created what I believe to be the world’s first coffee geyser. Yellowstone has nothing on a cup of coffee with a tiny little hole in the lid getting punched in the kidneys by a door mounted cup holder. No time to wipe up, though. We’ve got a 5:15 boat to catch. Victoria, Canada here we come.
=========End Steve's first update======
Sunday, August 23, 2009
Friday, August 21, 2009
More Awareness for ALS: Nancy O'Dell
Yesterday, one of my buddies alerted me to a piece on Fox. Nancy O'Dell's Mom, Betty, passed away from ALS in June of 2008, and Nancy is doing what she can to promote awareness and raise money for MDA and research. Her site is here: http://bettysbattle.org. You can find out more about events and happenings that she has planned on the site.
Nancy is Co-Anchor of Access Hollywood. Here's a link to the piece on Fox from yesterday.
http://www.foxnews.com/search-results/m/25971853/betty-s-battle.htm#q=als
Peace,
B.
Nancy is Co-Anchor of Access Hollywood. Here's a link to the piece on Fox from yesterday.
http://www.foxnews.com/search-results/m/25971853/betty-s-battle.htm#q=als
Peace,
B.
Tuesday, August 18, 2009
The Serial Killer
I had a dream the other night that was very frightening. I don't usually have nightmares, and the dreams that I do remember are generally just sort of strange and confusing. Normally, if I have a nightmare, I usually wind up kicking the ass of whatever was scaring me in the dream and emerge triumphant over the evil that was my nemesis in it. This has been the case for most of my life and therefore, I generally wake up from dreams feeling more a sense of relief and power than dread.
This was not the case the other night. I had a very realistic dream that involved a full on serial killer with a very sharp knife and a very bad attitude. There was a garage with a doggy door that was large enough for him to get through and I knew who he was and I knew that he was coming. I stood there in the door with one of my daughters as I watched him struggle through and emerge into the garage with his knife flashing. My daughter was scared, but I wasn't. I said "watch this" and the next thing you know, a bolt of lightening or something literally vaporized this serial killer into a bunch of ribbons and rainbows in a Disneylike cascade of shimmering gold sparks.
Normally, this would be the end of my dream. But it wasn't. The thing that woke me up in horror was that almost immediately after the light show was over, the doggy door flapped and the head of the serial killer popped through it again. This time with a really pissed off look on his face and my confidence had gone. This was the moment I woke up and the horror on his face, a foreshadowing of the horror he would reap on my family, was the horror I felt when I woke up.
As I lay there in that state of carnal fear, my heart racing, my muscles tense with anxiety, I began to realize that I was not in immediate danger of being sliced to ribbons by a knife wielding killer, but that the face of horror that I saw was the face of ALS and that it's recurrence was the manifestation of the fact that there is nothing that I or anyone can do to help my family, or any of the families that are suffering through this insufferable evil.
ALS is the perfect serial killer. We know it is out there. It gets some publicity. It leaves nothing for the "cops" (i.e. Dr's) to work with in terms of evidence. It strikes without warning. It causes immense fear and suffering before it's work is done. There is no way to stop it. There is no way to even cause its delay. It is the face of fear and all of us should fear it.
This is a villain who's ass I cannot kick. In my heart I know that, and that is why I could not beat it in my dream. All I can do is count on God to give me strength, my friends to support us and the cause, and medical scientists to continue to work to find a cure that will do what I can't do myself...put the serial killer out of this world forever.
Its not a fun place to be as a man. Our job is to fix things, to bring prosperity and protection to the family. To guarantee the safety of those that count on us. This I cannot do.
To have no power over this is the worst thing I can imagine, except to have it. That suffering I have to leave to my beautiful wife, which is also completely and totally unconscionable.
I continue to be humbled by your thoughts, prayers and support. Thank you from the bottom of my heart. I am running on empty, but the strength that I get from you, my friends and family fills my tank every day to the point that keeps me going. These are the things that Rock so hard, that re-inforce my faith and help me believe that this is only the beginning for my family.
Feel my arms around you right now.
Thank you.
B.
This was not the case the other night. I had a very realistic dream that involved a full on serial killer with a very sharp knife and a very bad attitude. There was a garage with a doggy door that was large enough for him to get through and I knew who he was and I knew that he was coming. I stood there in the door with one of my daughters as I watched him struggle through and emerge into the garage with his knife flashing. My daughter was scared, but I wasn't. I said "watch this" and the next thing you know, a bolt of lightening or something literally vaporized this serial killer into a bunch of ribbons and rainbows in a Disneylike cascade of shimmering gold sparks.
Normally, this would be the end of my dream. But it wasn't. The thing that woke me up in horror was that almost immediately after the light show was over, the doggy door flapped and the head of the serial killer popped through it again. This time with a really pissed off look on his face and my confidence had gone. This was the moment I woke up and the horror on his face, a foreshadowing of the horror he would reap on my family, was the horror I felt when I woke up.
As I lay there in that state of carnal fear, my heart racing, my muscles tense with anxiety, I began to realize that I was not in immediate danger of being sliced to ribbons by a knife wielding killer, but that the face of horror that I saw was the face of ALS and that it's recurrence was the manifestation of the fact that there is nothing that I or anyone can do to help my family, or any of the families that are suffering through this insufferable evil.
ALS is the perfect serial killer. We know it is out there. It gets some publicity. It leaves nothing for the "cops" (i.e. Dr's) to work with in terms of evidence. It strikes without warning. It causes immense fear and suffering before it's work is done. There is no way to stop it. There is no way to even cause its delay. It is the face of fear and all of us should fear it.
This is a villain who's ass I cannot kick. In my heart I know that, and that is why I could not beat it in my dream. All I can do is count on God to give me strength, my friends to support us and the cause, and medical scientists to continue to work to find a cure that will do what I can't do myself...put the serial killer out of this world forever.
Its not a fun place to be as a man. Our job is to fix things, to bring prosperity and protection to the family. To guarantee the safety of those that count on us. This I cannot do.
To have no power over this is the worst thing I can imagine, except to have it. That suffering I have to leave to my beautiful wife, which is also completely and totally unconscionable.
I continue to be humbled by your thoughts, prayers and support. Thank you from the bottom of my heart. I am running on empty, but the strength that I get from you, my friends and family fills my tank every day to the point that keeps me going. These are the things that Rock so hard, that re-inforce my faith and help me believe that this is only the beginning for my family.
Feel my arms around you right now.
Thank you.
B.
Sunday, August 16, 2009
Fun Fundraising...
Just a quick update:
I'm going to match the first $300 in donations on this, so let's get 'em in!
For the record, I think Steve will feel the strength on his competition and will complete several minutes under what the experts say he should expect. Plus, I know Steve and he's a competitive dude. My guess: 10 hours, 21 Minutes.
Fun Fun Fun.
All,
One of my old friends from High School in Stuttgart Germany has created a fun idea for a fundraiser for ALS research. He's participating in his first full Ironman Triathlon on August 30th, and has decided to create a contest to guess his time and is going to give an IPod Nano to the closest time. All that is needed to participate in the fun is a donation to the "Hope for Heidi" page, which benefits ALS-TDI. He sent his note out to friends on Facebook, but I figured I'd re-post it here and see who else might want to participate.
Here is his original message, the link to donate is there, and if you would like to participate, donate and then post your time as a message to the blog here, on on the "Hope for Heidi" page with the amount of your donation. Note that the donations on that site do NOT update automatically, even if done via a credit card, so don't expect the little thermometer to move up right away.
All the best,
Bill
=======Begin Steve's Message=====
Hi gang. As most of you know, my/our friend Bill Sedgwick's wife Heidi has ALS -- a terminal condition for which there is currently no cure. It goes without saying that Bill, Heidi and the kids could use our help.
As you may also know, I'm racing Ironman Canada on August 30. And since completing an Ironman requires a tremendous amount Karma, I've created a fund raising contest that I call: "WIN AN IPOD NANO BY GUESSING STEVE'S IRONMAN CANADA FINISHING TIME". (Catchy huh?) It's simple. Here's how to play:
1. Right now, (or at the latest before August 29), make a donation, no matter how small or large at the following website:https://hopeforheidi.alscommunity.org/
2. Send an email to me at skukta@gmail.com and guess my finishing time for Ironman Canada (hours, minutes and seconds, i.e. 10:30:24 or whatever your guess is.)
3. If you are closest to guessing my finishing time, I will send you a new Ipod Nano. (Ties go to the person who made their donation earlier -- the "punish the slacker" rule, I call it.) Nothing else to it. Donate, guess, help a friend.
So that the contest is fair, here's some information to help you estimate my finishing time.
1. This year I have done five (5) Half-Ironman Events. My average finishing time was 5 hours 3 minutes.
2. Knowledgeable folks say that an Ironman is at least 2 times as hard as a half-Ironman PLUS 30 minutes -- if you're having a good race.
3. The Ironman Canada course appears to be average in difficulty.
4. The race cut-off time is 17 hours and 0 minutes. The race starts at 7:00 a.m. Pacific Time on Aug. 30.
You can watch the race and track me at http://www.ironmanlive.com/. Maybe you'll see me run through the tape at the time you predicted, holding a picture of the Sedgwicks.
Thanks everyone. Steve
====End Steve's Message=====
I'm going to match the first $300 in donations on this, so let's get 'em in!
For the record, I think Steve will feel the strength on his competition and will complete several minutes under what the experts say he should expect. Plus, I know Steve and he's a competitive dude. My guess: 10 hours, 21 Minutes.
Fun Fun Fun.
All,
One of my old friends from High School in Stuttgart Germany has created a fun idea for a fundraiser for ALS research. He's participating in his first full Ironman Triathlon on August 30th, and has decided to create a contest to guess his time and is going to give an IPod Nano to the closest time. All that is needed to participate in the fun is a donation to the "Hope for Heidi" page, which benefits ALS-TDI. He sent his note out to friends on Facebook, but I figured I'd re-post it here and see who else might want to participate.
Here is his original message, the link to donate is there, and if you would like to participate, donate and then post your time as a message to the blog here, on on the "Hope for Heidi" page with the amount of your donation. Note that the donations on that site do NOT update automatically, even if done via a credit card, so don't expect the little thermometer to move up right away.
All the best,
Bill
=======Begin Steve's Message=====
Hi gang. As most of you know, my/our friend Bill Sedgwick's wife Heidi has ALS -- a terminal condition for which there is currently no cure. It goes without saying that Bill, Heidi and the kids could use our help.
As you may also know, I'm racing Ironman Canada on August 30. And since completing an Ironman requires a tremendous amount Karma, I've created a fund raising contest that I call: "WIN AN IPOD NANO BY GUESSING STEVE'S IRONMAN CANADA FINISHING TIME". (Catchy huh?) It's simple. Here's how to play:
1. Right now, (or at the latest before August 29), make a donation, no matter how small or large at the following website:https://hopeforheidi.alscommunity.org/
2. Send an email to me at skukta@gmail.com and guess my finishing time for Ironman Canada (hours, minutes and seconds, i.e. 10:30:24 or whatever your guess is.)
3. If you are closest to guessing my finishing time, I will send you a new Ipod Nano. (Ties go to the person who made their donation earlier -- the "punish the slacker" rule, I call it.) Nothing else to it. Donate, guess, help a friend.
So that the contest is fair, here's some information to help you estimate my finishing time.
1. This year I have done five (5) Half-Ironman Events. My average finishing time was 5 hours 3 minutes.
2. Knowledgeable folks say that an Ironman is at least 2 times as hard as a half-Ironman PLUS 30 minutes -- if you're having a good race.
3. The Ironman Canada course appears to be average in difficulty.
4. The race cut-off time is 17 hours and 0 minutes. The race starts at 7:00 a.m. Pacific Time on Aug. 30.
You can watch the race and track me at http://www.ironmanlive.com/. Maybe you'll see me run through the tape at the time you predicted, holding a picture of the Sedgwicks.
Thanks everyone. Steve
====End Steve's Message=====
Monday, August 10, 2009
Catching up
Hi Everybody,
I apologize that it has been a while since my last post. It seems there is never enough time in a day to do all that you want to do. With hospice care, we have somewhat of a new pattern and it is still taking some getting used to. Somehow, I don't feel like I have any more time than before, but maybe that is because business ventures are keeping pace with any extra time I may have had, and so I suppose that is a good thing. H's "bed baths" are a comfort to her to not have to deal with transport and sitting up in the shower and although I was fine with giving her her showers, I could see how it was becoming very hard for her to sit up for that period without the support she needed.
Right now, our biggest hope is to get a wheelchair that H is comfortable in enough to go out for a bit. Neither of the electric chairs really work for her anymore and now we just really need something that fits her and is comfortable for an extended period of time. We are working a few angles now. It is so sad that insurance companies won't help in this regard, when it is something that is so necessary for comfort in our situation. By the same token, the companies that provide the chairs overcharge so ridiculously that you can almost hardly blame them. As an example...$7,000.00 is the price tag for a Manual wheelchair that has the necessary support and features. It is ridiculous.
I ran across a chair on Craigslist.com that would probably work and it belonged to an elderly gentleman that also had als and passed about 3 months ago. Apparently they paid (or their insurance did) $6,800 for this chair that he used for 3 months or so. They are still hoping to get $5000.00 for this chair, which I consider a pipe dream, since there is no real market for medical companies to re-sell these chairs. I paid something like $900 for the initial electric chair that I got for Heidi, which worked for quite a while because she was strong enough then to deal with it. The original invoice on that chair was something like $21,000.00 and when we took it to the medical company to re-size it to her, it was going to cost $14,000.00 additional dollars to do that. Talk about a shameful racket. These people should all get a glimpse of what is on the other side of their "business" and maybe they would stop this madness.
In the end, I hope that these folks in Castle Pines will donate their chair to ALSA or a similar organization so someone can use it. This is what we plan to do with all of our equipment once it is no longer of use to us.
I know you probably expect more from my posts than this, but of late I have not been much inspired. It seems like we are in some type of holding pattern with nothing to look forward to and nothing additional really to fret about. Certainly there are some things that are no fun, but I'm not going to elaborate on the negative here.
It has been nice having some family in town and the girls are exhausted each day, which means for easy bed times and good night's sleep. School is back in session, so the days will be somewhat easier for me minus the "entertainment" factor.
Peace,
B.
I apologize that it has been a while since my last post. It seems there is never enough time in a day to do all that you want to do. With hospice care, we have somewhat of a new pattern and it is still taking some getting used to. Somehow, I don't feel like I have any more time than before, but maybe that is because business ventures are keeping pace with any extra time I may have had, and so I suppose that is a good thing. H's "bed baths" are a comfort to her to not have to deal with transport and sitting up in the shower and although I was fine with giving her her showers, I could see how it was becoming very hard for her to sit up for that period without the support she needed.
Right now, our biggest hope is to get a wheelchair that H is comfortable in enough to go out for a bit. Neither of the electric chairs really work for her anymore and now we just really need something that fits her and is comfortable for an extended period of time. We are working a few angles now. It is so sad that insurance companies won't help in this regard, when it is something that is so necessary for comfort in our situation. By the same token, the companies that provide the chairs overcharge so ridiculously that you can almost hardly blame them. As an example...$7,000.00 is the price tag for a Manual wheelchair that has the necessary support and features. It is ridiculous.
I ran across a chair on Craigslist.com that would probably work and it belonged to an elderly gentleman that also had als and passed about 3 months ago. Apparently they paid (or their insurance did) $6,800 for this chair that he used for 3 months or so. They are still hoping to get $5000.00 for this chair, which I consider a pipe dream, since there is no real market for medical companies to re-sell these chairs. I paid something like $900 for the initial electric chair that I got for Heidi, which worked for quite a while because she was strong enough then to deal with it. The original invoice on that chair was something like $21,000.00 and when we took it to the medical company to re-size it to her, it was going to cost $14,000.00 additional dollars to do that. Talk about a shameful racket. These people should all get a glimpse of what is on the other side of their "business" and maybe they would stop this madness.
In the end, I hope that these folks in Castle Pines will donate their chair to ALSA or a similar organization so someone can use it. This is what we plan to do with all of our equipment once it is no longer of use to us.
I know you probably expect more from my posts than this, but of late I have not been much inspired. It seems like we are in some type of holding pattern with nothing to look forward to and nothing additional really to fret about. Certainly there are some things that are no fun, but I'm not going to elaborate on the negative here.
It has been nice having some family in town and the girls are exhausted each day, which means for easy bed times and good night's sleep. School is back in session, so the days will be somewhat easier for me minus the "entertainment" factor.
Peace,
B.
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