I am really excited about this website. It will give me a
chance to keep in contact with all of my friends, and keep you all up
to date with the goings on here at Friends of Jeff. It will also give
me an opportunity to share with all of you much of what I have learned
from what I have gone through and continue to go through. For those of
you unfamiliar with me and my story, you may get a quick background at
our
page.
This website will give us an opportunity to share in the
following ways:
Get all of the latest goings on here at Friends of Jeff on our
page.
CONTACT US
On our 
page, we
welcome your input and ideas for FOJ, as well as providing you with a
way to contact those here at FOJ, including myself.
QUOTATIONS
I provide one of my favorite inspirational quotations everyday at the Jeff's
Quotations section on our 
page. I
also review some of my favorite inspirational and positive thinking
resources
JEFF'S BOOK
I am in the process of writing a book about my experience with ALS (Lou
Gehrig's Disease) and what my journey has taught me. On our 
page, you may read excerpts from my work as I write
it, and provide feedback to me along the way.
JEFF'S UPDATES
Here on the 
page, I will periodically update what is happening in
regards to my life and my health in the Jeff's Updates
section below. Check back often!
EMAIL UPDATES
If you would like to receive Jeff's Quotations, FOJ
News, or Jeff's Updates directly in your email
box, just CLICK HERE, leave your email address and which items
you would like to receive. That's it!
EMAIL US
On our page, we provide you with a way to contact those here
at FOJ, including myself. Send me your thoughts, I would love to hear
from you!*
In 1990, when I had already outlived all my
doctors’ prognoses, I set
the
seemingly absurd goal that I would raise my infant daughter and attend
her high
school graduation. She has been with me ever since, and TONIGHT, I will
witness
her begin a new chapter in her life when her tassel crosses her
graduation cap
at
Lake Oswego
Below you will find a pictures from Thursday
evening.
| Back in October, I wrote of the role I was
playing with the Lake Oswego High football team. At that time the team
was 5-1 or and regrouping from a disappointing loss to conference
rival, Clackamas. Since then, they have run off seven straight wins,
including four state playoff victories and find themselves playing on
Saturday for the Oregon State Championship. They appear to be peaking
at just the right time as they have dismantled two very good teams in
South Medford and Beaverton the last two weeks. The game takes place
Saturday, December 11th at Autzen Stadium in Eugene and is on Fox Sport
Net at 3:30 P.M.
It's incredible to watch the progress of
QB., Nick Lomax. He was a little inconsistent early in the year, but
has made incredible progress and has played nearly flawlessly the last
two weeks. And Kevin Maher has been so spectacular all year long I
don't have anything more that I can add to this article in the
Oregonian today (CLICK
HERE) other than to say I think he might be the best high
school player I've ever seen. |
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I visited the team Wednesday afternoon for practice and listened to Coach Coury read my message to the guys. It was great to see how rapt at attention the guys were when Coach was reading my words. There was an Oregonian reporter and a cameraman from Fox Sport Net there so you could feel the importance of what is happening this week. The great thing was that the guys seemed confident and loose. After Coach read my letter to the team, the kids and coaches participated in a hilarious talent show that didn't exhibit a lot of talent, but exhibited a powerful family atmosphere, strong dude bonding, and a lot of laughs. |
Laker Football Head Coach, Steve Coury, with me before practice Wednesday. |
| After the bonding was over, it was time for practice, but not before having a few pictures taken with the team. I hope that you'll all be pulling for my Lakers on Saturday! | |
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The guys and me Wednesday
before practice.
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In the 2003 Oregon State High School Football Playoffs, Lake Oswego High Coach, Steve Coury, contacted me to see if I would write a motivational letter to his team. They were facing Tigard in the semi-finals and needed a shot in the arm. Although Tigard won the closely contested battle and went on to win the State title, apparently the letter was not to blame as Coach Coury and I agreed to collaborate in a similar fashion this year.
In late August, I was introduced to the 2004 Lake Oswego Lakers football team where I said a few words to the team and my buddy, Chris Abbott, read my statement of purpose to the team. It was decided that I would write a motivational letter to help inspire the team every week. Coach Coury reads the letter to the team every Monday at practice and then posts it on the locker room wall for the kids to ponder all week long preparing for the next opponent.
This has been a challenging but rewarding experience. It is tough to keep coming up with new angles to try to motivate the kids, but I try to make it relevant to what is happening with the team's journey to through the season. The kids are hungry, eager to learn, and have their sights set on a State championship. It's a tough row to hoe, but they have just one loss and are one of the favorites to win it all.
Support my Lakers!
- Jeff
Julia Hall from Friends of Jeff spoke first, telling a little
about FOJ and its purpose, and a little about me. Her and her husband,
John, prepared an overhead power point presentation with some pictures
and age appropriate information. Then it was my turn.
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I was a little unsure whether or not the kids (or the adults for that matter) would be able to understand what I was saying. I was nervous, but I also kind of liked the adrenaline rush of all eyes being upon you with the expectation to deliver. I'm not exactly sure what kind of delivery expectations grade school kids have, but since my ability to speak has been severely damaged, it was still a challenge! I thanked the kids for what they are doing, told them a little about myself, and tried to leave them with an up note. |
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| It's important to me that people not see me as a tragic figure, but as someone that represents possibility. I think the talk went well, but I never dreamed the kids would have so many questions.At one point I thought that if the teachers and administrators would let them, they would ask questions all day! That was fine, I had no problem answering them and found it really interesting to find out what they were curious about. One boy asked for specific details of how | |||||
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1-15-04
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my last attempt to read was, and then I'd do it all over again! Patience, Jeff. Patience. Well, thanks to all of you that have give to Friends of Jeff, I no longer need to wait as I'm diving in and devouring page after page after page! Thank you! Thank you!! Thank you!!! Instead of 20 minutes seeming like 3 hours of frustration, 3 hours of reading feels like 20 minutes of heaven! Once again, I want to thank all of you that have given, Gerry, Michelle, Mollie and Julia here at FOJ, and a very special thank you to Susan Boldt at Mobility Unlimited. From the picture above, you can tell that I am one happy man now! - Jeff |
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My buddy Chimes, his wife Michelle, my caregiver Kathe, and I started the evening at about 6 PM by going to a small BBQ in Dunthorpe on the Willamette River. Unfreaking-believable home. Spent a good couple hours with Gene Simmons and Tommy Thayer (Black 'N Blue guitarist, now KISS guitarist). Gene impressed everyone with how down to earth he was, and especially how he treats me (patiently listens to every word I say no matter how long it takes me to croak out my words). Gene told old KISS stories and a dirty joke he learned from Woop (Black 'N Blue guitarist). Some at the BBQ even volunteered for future FOJ involvement.
We arrived at the Roseland Theater about 8:45, so I missed AC/Disco (Woop, brother Patrick, drummer Thad Smith) and was promptly chastised by Woop. Labansky was already into their set when Kathe and I took our place on the special riser that had been set up for us. I was treated like a king! I got the red carpet the whole night and people could not have been nicer. Most of the time I had five, six, seven people crowding around me, most of them hugging me and kissing me- some were even people I'd never met!
After Labansky, Sequel played. Then it was time for Gene
Simmons. Gene and I came out together with him putting his arm around
me and saying, "This is Jeff. He's my friend and he should be yours. If
he's not, I will come find you!"
Gene then had the lighting director raise the house lights so he could
see the crowd and implored only the serious bidders to remain up front.
He whipped out one of his legendary axe basses and said, "the bidding
on this starts at $2000." It was signed by all four of the current KISS
members- Gene, Paul, Peter, and Tommy. What a trip! Bison (Tommy) will
always just be the Bison to me, but he's in KISS nonetheless.
Chimes cracks me up while Gene takes care of business
Gene then turned to an oil painting of himself without makeup, with a smaller facewith makeup below. Thebidding started at $200,
but Gene started throwing in front row tickets to the upcoming
tour with Aerosmith and soon had someone buying the painting and front
row tickets for four grand! Being out there with Gene, hearing him
strategize and watching the frenzied crowd was awesome, but towards the
end of the auction I thought my bladder was going to burst! I had to be
rushed off the stage before the auction ended or I might have exploded
right there!
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Everything took a little longer than expected, so Black 'N Blue did not take the stage until just after 11:30. It's amazing, that Jaime St. James (Black 'N Blue singer) had lost about 30 pounds and looks as good as he ever has. Black 'N Blue kicked ass, opening with Autoblast and closing with I'm the King. Jaime announced that they will be recording a new album in the next few months, their first studio album since In Heat in 1988. Since Tommy is now in Kiss, his replacement Sean Sonnenshein joined the band for a song or two. The aftershow was killer. People got to meet Gene, get
an autograph, and have their picture taken with him. It was awesome to
watch my parents talking with him and having their picture taken with
him. My parents came away quite impressed, my father saying, "I've
never met anyone quite so sure of who they are and what they are about.
I'll tell you, after meeting him, nobody better ever say anything bad
about him to me." Perhaps thats because Gene had put his arm around my
dad and whispered, "I think we just raised a whole lot of money for
Jeff." My mother thought Gene was a total kick. |
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The after-show party continued until about 3:30 in the morning and I didn't get to bed until about 5:00 a.m. Of course I couldn't sleep until after 6:00 and I'm still paying for it! I had so many people tell me this was one of the best nights they have ever had. I hope that we are able to do this again, because with how much fun everyone had I can guarantee we would not only get all of these people back again, but we could build on this turnout. Tell me, don't you wish you had been there? |
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Thank you to all who made this night possible. It doesn't get any better than this. - Jeff |
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It was an incredible thrill for me to finally meet Gene Simmons in 1986. It was the experience of a lifetime to sit and watch him produce my friend's and brother's albums. I got to know Gene fairly well and I especially love to listen to him tell old KISS stories from the years gone by.
As nice as Gene has always been to me, I was stunned when my brother Patrick came over and had me type in the web address to Ticketswest.com. I pulled up the website to find that tickets were on sale for a Friends of Jeff benefit concert that reunites Black N Blue with Gene Simmons hosting. When Gene heard about it, he insisted on flying up from Los Angeles to host and emcee the event. Talk about a mind blower! Thank you Gene!
I also want to thank Bob Anchetta, along with Greg Georgeson and all the members of Sequel, Jeff Labansky, the members of Black N Blue, and most of all my brother, Patrick for helping put this event together. Your kindness, caring and effort to ease the burden on my daughter and me is not lost on me and I am extremely grateful. Thank you all.
- Jeff
Now check out the freak!
I thought I would bring you up to date on what has been happening with me. As you may or may not know, I use voice recognition for my computer input. Because the ALS has affected my speech, it is often slow going, and when I get a sore throat, a cold, or even tired I sometimes have to stop using the computer for a while altogether.
The last several weeks, I have had some real problems with sleep. This is not a new problem for me. When I have a couple rough nights of sleep in a row, you would think that I would collapse from exhaustion. Instead, I get this powerful buzz in my brain that makes it impossible to sleep. Thus, a vicious cycle and a sort of snowball effect takes place.
I wish I could say that being tired is all that happens in this snowball, but I'm not so fortunate. When this happened back in 1998, it got bad enough that I routinely experienced vomiting, difficult breathing, and violent hallucinations. I couldn't have hallucinations of some idyllic utopia, or even naked supermodels. No, no. Instead, I get violent demonic beasts snapping their teeth at me and tearing my flesh. Wonderful!
I went to doctors and sleep clinics, but no one could help. I ended up sleeping upright in a recliner for eight incoherent months, but eventually things calmed down. One evening I decided I would kick the problem, returned to my bed, and got a decent night of sleep. Until the last few weeks, I've been okay.
I'm on the mend after nearly three weeks of sleep hell, but I'm once again out of the chair and back in my bed. Unfortunately, I've been a bit zombie-like and pretty pathetic with my voice recognition input. I've tried to keep up with "Jeff's Inspirational Quotation For Today", but you might have noticed I couldn't get them out consistently last week. I've also not been able to return my emails punctually, but I will get them returned!
The fundraising campaign is making steady progress, but unfortunately, I am going to require an adjustable bed to further keep a handle on the sleep issue and they are not cheap. I'm going to petition Medicare for funding, but I'm not optimistic- pretty inflexible.
Thank you for all of your support! The Energizer Jeffie keeps on going with a little help from his friends!
- Jeff
1-22-03
Wow! I can't believe it's up! The Web site has Little Jeffie more than a little pumped! I really hope that you will give us some feedback on this site so that we can make it a great experience for everyone. Especially I would like feedback from you on the book that I am writing. I'll put excerpts from my work on our Wake Up Call! Page. I'll be looking for brutal honesty, especially as it relates to what interests you and what you find a big bore. So give it to me!
This is going to be fun!
- Jeff
* I use voice recognition software for my computer input.
Because my illness has impaired my ability to speak clearly, my
computer input is tediously slow. I cannot always answer every email,
but I assure you that I read all of them and find them a great source
of support and inspiration! Thank you for taking the time to write to
me.