My very bestest buddy, hockey teammate and Rush concert going pal of 30 years is sick. He's the hardest working and most devoted family man I know. . . truly, my hero. . . father of 5, he was working his full-time day gig, one evening part-time yob, and had just started a weekend part-timer in order to keep financial ends tied up. His wife, Dawn, hosts family child care in their home during the day and works evenings part time. Plus, she volunteers hundres of hours each year and has pretty much single-handedly turned the Mukwonago "Relay For Life" Cancer Society fund-raising event into one of the most successful in Wisconsin. They are also endlessly involved in all of the kids' activities, committees, fund-raisers and performances. But Ken hasn't been able to work for about 10 weeks and they had to cancel their trip west to see Rush at the three San Fran area shows. Now, we're hoping that he'll be well enough to attend his "local" shows in Milwaukee and Chicago. . . but even that seems improbable. Needless to say, it's all a heavy burden on Dawn and the family, both emotionally and financially....

Doctors don't seem to agree about the exact cause of his ailment, nor its treatment or prognosis for recovery and in the meantime, he's unable to work. . . hell, he can barely walk and sleeps about 20 hours per day, but is still exhausted when he is awake. Here are links to sites that explain the ailment(s) that affect Ken, and another to a site we've set up to inform about the event we'll hold on July 21, in Waukesha, Wisconsin to benefit the family. You can make a cash donation to the family via PayPal at www.SharonFund.com , or if you're in the mid-west over the weekend of July 21, come on by and enjoy the day.
GBS info
CIDP info
The Sharon Family Fund

The wise and powerful Kozmo4Rush and the "gotta see" Rush tribute band out of Chicago, Animation, have already gone out of their way to offer help. Unfortunately, there is a scheduling conflict and Animation can't play at the event on July 21, but keep an eye on their site, and at www.SharonFund.com for info about a future date, probably in October, where you'll be able to catch Animation playing to benefit Ken and his family. And if you're in the Milwaukee for July 4, don't miss them at SummerFest, opening for Asia. . .

I know you're all busy with summer plans and your own busy lives and that there have been a number of "hats" hung out for $$$ on Counterparts recently. So donate if you can, pray if that's your thing, send "get well" vibes to Mukwonago, hold a healing circle. . . it's all good, welcome and needed. . . . It is after all for my good friend, and what's more important than that?

Thanks all. . .

That is such a nice site that they have set up!

CPEEPS!!! Help this family out! You can go straight to your PayPal account from this site and make a donation in less than 30 seconds. I am sure that even the smallest donations will be appreciated...even if it's only ten bucks.

Hey, "Ten bucks is ten bucks"!

:mkay

We need to keep this at the top of the list when viewing "new posts".

Please C Peeps....if you're spending $5000 on Rush shows for this tour, could you donate $5.00 to this family?

I don't know them, I have never met them, and I have never met Huge Ackman. But something tells me that this family needs help.

^
Yes!

Have done so.
I wish your friend all the best...

Indeed,

and pinned.

Thank You Julie!

And again, THANK YOU all! Lots of great messages of support and donations.

Ken's condition hasn't changed, but I've been doing more research and found a GBS Foundation in the US. I spoke with the President there and she gave me some new insight.

Basically, as bad as Ken seems, I'm told that he's actually in much better shape than others who have suffered from the same ailment. She told me that her husband had not been able to walk at all for 18 months and that some victims need intensive care hospital treatment for months. Ken was in the hospital for a week and, although he's pretty much in bed all day, he CAN walk some. He needs to be hucked around in a wheel chair for any major excursions, but he can propel himself for short distances if necessary.

The underlying message is to learn PATIENCE. . . GBS takes time. There is no cure, no real known effective treatment and no pattern on which to base prognosis for recovery. The main "good" news is that GBS is the only known neurological disorder of its type that recovery is possible, and usually expected. Other similar afflictions like MS and ALS are usually fatal. . . so, as unbelievable as I might find it, the fact is that Ken could be much worse off. . .

But it is a long road and the Sharon clan is going to need my help and support (and yours too!) for a while longer. . .

And once again, thanks to all for your support and donations. . .

Any news on if they may be able to attend their local shows, Huge?

We probably won't know for sure until right before the dates. . . The recovery so far has been a wild roller coaster ride of ups and (mostly) downs. . . If we have to, we'll use a wheel chair and look for handicapable seating. . . dammit, he'll be there on a freakin' ambulance gurney if that's how it's got to be. I think that one way or another, we'll get him there; at least for Milwaukee. The Chicago show is about a two hour trip and if he's in the same shape as he is now, that might be too much for him. How much of the show he'll stay awake for and what enjoyment he'll get remains to be seen. No matter what, I think it has to lift his spirits at least a little. But when it's all said and done, we're hoping that he'll be on the mend by then and that attending the two shows will be a nice little treat as he's feeling better. . . Thanks for aksin'. . .

Thanks for the kind words, Hugh. I'm always glad to help when its really needed. I'm there for them! (See my sig!)

I am now going through my ever humongous Rush collection and massive rock memorbilia collection and I'm seeking out some donations to give to help raise funds to help this great family. I did ask the assistance of ANIMATION, Chicago's Rush tribute to Rush, but as Hugh said, they have other obligations - however - there is the chance of a show sometime in October at Shank Hall. (Not yet confirmed, but is under stong consideration!!!!) I'll be there for sure if it happens!

As for attending the Charity Event itself, I have a Nickleback concert at Alpine Valley that I'm attending the same day so I'll be within the area and I am planning on stopping by for a visit before the show. I'll have something cool that I'll donate to help raise funds.

Please help out in any way you can. When Hugh originally wrote me, I was struck by the emotion that was contained in that letter. I couldn't say no. Please help too, if you can!

As soon as I make my choice, I'll let you all know. Hopefully we can make a difference!

My best to Ken and his family!

Just bumping this for my buddy Huge and his friend Ken. While I have not met Ken, I have met this goober who is touching Neil's bass drum. OY! Touching Neil's drum - what was he thinking?!?! (Yes, he was told to please remove his hand from the drum!)

Anyway, John is a decent human being and as humble of a person as you'll ever meet and if he's asking for help then you know it's serious. I've donated to Ken's fund and I hope you will do the same. Hey, if we can all vote to get a baby panda in DC named Tai Shan then there's no limits to what we can do!

Click and donate...it's easy!

Brenda

Um, clearly you mean someone else. . . I'm a full-on a**hole, just ask around. . . especially Neil's lacky who was prepared to cut off my hand for DARING to drape it over the bass drum for a photo op.... I thought he was gonna hurt himself sprinting over to tell me, "NO TOUCHING!!!"...

But I just gotta say, I've been very impressed and moved by the kind thoughts and generous donations of C-Peeps and lots of others. There are so many great donations being received that I can't stop to thank everyone, but two wonderful sources of unexpected generosity came up today; thought I'd share.

One is a customer of the bicycle shop. We just sold him an expensive bike. As he was taking delivery, I happened to mention that lots of my time has been spent pounding the pavement for Ken's benefit event so I haven't been riding lately. He mentioned that he works at EA Games and that their company donates to causes like this all the time. I sent him an e-mail, and although I have not received word about a specific donation, a commitment has been made and we're looking forward to adding EA Games to our ever-increasing list of donations.

Second, and one very close to my heart came from The Pasadena Tournament of Roses. I've been a member of The Tournament for the past 6 years and have loved being involved in the preparation and execution of the Parade. Of course as a former football player, I especially enjoy access to tickets for the Rose Bowl game each year . . . but that's the selfish me. I asked if The Tournament ever supported private benefits or charities and was told, "Maybe, sometimes", so my expectations weren't high. I'm throwing my personal Parade and Game tickets into the auction mix, so knew that the T of R would be part of Ken's event, even if it was indirectly. Well, I just got e-mail informing that the T of R is donating four 2008 Rose Parade Grand Stand tickets to the Ken Sharon Family Fund benefit. . . and I just think that is the coolest thing on wheels! They are known to the world, viewed on television by BILLIONS of people on January 1, every year, and don't know Ken Sharon from Adam. . . but because I asked, they gave. . . wow. . . . just, wow......

So the good keeps happening. And I like that. I weep every day for my friend, but am somewhat lifted by unexpected acts of kindness and generosity. . . like those from all of you.... thanks again my friends.....

Kozmo just made up a package to donate. Just a small token from my heart.

More info on the donations soon - (working on photos!), but it does include some very cool Rush stuff, Dream Theater stuff, Coheed and Cambria stuff, and something personal to Ken and his family.

Again folks, I cannot BEG enough for more help for this dude. This has touched my heart a lot, and I ask that you have the same feelings as I have. Any portion of your time, or a $ gift, or even just a simple "get well" card is plenty! Its about making a good man better to help raise his family.

More about Ken and his family can be found here:

www.sharonfund.com

Kozmo

Ken is mostly in really crappy shape right now. Body parts have quit, functions have stalled, over-all morale is in the dumper. Dawn is trying to cope but seems a wreck when I talk to her. Ironic "good" news is that because Ken has continued to get worse, doctors seem to be taking the condition more seriously. However, as I understand it, that's about all that can be done. There isn't much treatment for the disease itself, just the symptoms. So as parts stop working, doctors try to fix them. Ken is undergoing a new treatment called plasmapheresis (plasma exchange) and continues with intravenous immunoglobulin (IVIg) every couple of weeks. I guess the new treatment is a real beat-down, but does seem to have immediate, although short-lived, benefits. He's up for part of the day after treatment, but usually peters right out and is zonked for days after.

Real good news is that Ken's benefit event scheduled for July 21st, in Waukesha, Wisconsin, is shaping up to be quite a festive event. There are now two bands (one for day-time enjoyment and a second that will play more as a "concert" that night) along with Tejas Hold'em poker, carnival games and food. All of the major pro sports teams in Wisconsin have chipped in along with a couple of individual Green Bay Packers players who learned of the event and contributed some nice signed memorabilia. And early GREAT news on the donation front. . . the benefit fund bank account already has nearly $2,500 in it, thanks in no small part to all y'all Peeps.... So, once again, THANK YOU~! With the pile of great items donated for the July 21 event, I'm counting on a total of at least $10k for the Sharon family. That's a start, and a great one, I'd say!

So, I'm driving to L.A. Thursday night and will fly to Milwaukee Friday for the event on Saturday. Then it's back to L.A. on Sunday for the Hollywood Bowl Rush gig on Monday with a drive right after the show back to Nor Cal to work at 11 a.m. on Tuesday morning. This sort of thing used to be "easy" but I think my old bod might take a while to recover from this one.... But I can't imagine a better reason to toss the candle into the fire like that. . .

You're a wonderful friend, the world needs more people like you. I just made my donation, and am praying for his recovery.

Just giving this a bump since today is the day for of the fundraiser in WI.

Ken only wishes he could be out at all the Rush shows having a good time and enjoying a beer (or two) like peeps here... Every little bit helps so please consider donating to Ken's future beer fund!

Click here to donate - operators are standing by!

I'm speechless, humbled and awed by our day....

The combination of cash donations via PayPal from generous folks like all y'all C-peeps, a wildly successful fun day and auction, and the sale of a couple of larger items netted a ridiculous amount of money..... so far, we've cleared $28,500 (revised with updated total) and have nearly $5,000 more in the works.... wow, and fookin' WOW!!!

I literally can't open my mouth to talk about the event or even say the amount out loud without breaking into tears . . . it was so much more than I could have expected. We saw people from all aspects of Ken's life from high school, to youth hockey to past and current employers. Even his current corporate boss drove up from Chicago (with a donation check for $2,500) from Chicago. Another CRAZY boss of Ken's brother-in-law absolutely HAD to have Rose Bowl football game tickets and gave Ken's b-in-law a check for $5,000 and said, "Get me those tickets!"... You see, the Wisconsin Badgers had a banner year last year and everyone in WI is hopeful they'll repeat this year and land in the Rose Bowl on Jan. 1, 2008... Well, I didn't even put those Rose Bowl tickets on the block, just sold 'em to the guy and auctioned off a second set.... guess I'm not going to the game this year after all. Ken came out with the whole fam damily and made it until almost 9:30. . . way past his bed time. But he's paying the price today and is fully wiped out.

And super awesome great encounter of the day was Kozmo4Rush who was on his way from Aurora (PARTY ON!!) to Alpine Valley for the Nickelback show and stopped by to say "Hi", meet in person and drop off some great Rush & Dream Theatre items we'll sell later on ... I have a couple of photos of Koz and me at the event, but am not near a compuker that I can upload 'em right now... you'll see them later.

Great news on Ken's health... well, the first good news in a while anyway. He sounded waaaay better and looked pretty darn OK. I've described his current condition as about 8% of his former self, but a couple of weeks ago he was more like 2%. So things seem at least not to be getting any worse. The treatments still wipe him out and his legs don't work, but there was some strength in his voice and hands, and he laughed a lot while we were out. I think we did him a world of emotional and spiritual good, which is the best part of the day....


The main organizer of the event, Nancy, pulled together one of the most spectacular events I've ever attended and did it in just over 6 weeks. She is super human and was about 95% responsible for planning the day. There were lots of volunteers who put time in during the day (including my dad who manned the grill for 6 hours, and my mom who ran a 50/50 raffle that netted $205 (well, actually $410 as the "winner" of the raffle just kicked his share right back into the donation jar. . . fook, I can't even write about that without sobbing. . . give me a second to clear my eyes... )), all of whom made the day possible and the great success it was, but Nancy was THE driving force who made it happen. She won't ever read this, but I've told her how special she is and how amazing a day she pulled off. We estimate that 500 people attended and have the preliminary financial results which make it all so worthwhile. I'm travel weary having left Milwaukee at 6:45 a.m today arriving in Oakland at noon to drive to L.A. and just arrived in Pasadena in preparation for tomorrow's Hollywood Bowl Rush gig. I am giddy with anticipation about that but wish Ken could join me. I'm just planning to run up the cell phone minutes and keep him on the line as long as he wants to listen to the show...

So, once again, THANK YOU all!! If it were possible, I'd hug each and every one of you , but for now, know that my heart is full of gratitude and I'm truly humbled by the wonderful generosity of everyone who contributed to the success of the event.

What a great success! Glad to hear the results of the big day and that Ken was able to make it out for at least a little bit of the event. It's nice to know so many people rallied for the cause.

And remember it's never too late to donate!

Cool that Kozmo was able to drop by as well and donate the cool shizzle.

Thank you for the very kind words everyone. I was very eager to help any way I could, after I recieved a very heartfelt letter from Huge Ackman. I couldn't say "no".

I'm glad that my donations will help!

Here is a photo of the items I donated:



However, my help does not stop here. There will be more to come!!! (Details on that coming soon! Its gonna be very, very, VERY cool!!!! - Huge - take it from here.....!!)

It was indeed a pleasure to meet Mr. Ackman (although breif) on my way to a concert. I had to make several rearrangments, and taken a few detours to make it happen, but I was determined to be there regardless of the cost (of gas) or time it took. Glad I did, because I know it would have made a difference........and it has (and will!)

Please stay tuned for the details of my donations.

My thoughts to the Sharon Family! Wishing our friend, Ken, the best!!!

Endlessly rocking (and caring!)

Kozmo

(Okay, Huge...where's that photo of us?)

It's in my last post.... edited it this morning to add the photo... woo!!! And should anyone want to obtain the very cool items donated by Kozmo, I'll entertain offers. Otherwise, they'll likely be part of a musical fundraiser targeted for October... Still hoping our friends from Animation can add a Friday night gig to their Milwaukee date on Saturday, but need to confirm the venue for the show and that Animation can play that Friday to benefit Ken... Of course if that occurs, I'll post here so you can all come on out and rock with a premier Rush tribute trio, Animation

Koz, can't wait to hear what other goodies you have planned..... oooo, I'm all goose bumpy thinking about it.....

DOH!!! I missed that! Thanks!

Yes, something cool is being planned for October. We are working with Chicago RUSH tribute band ANIMATION (www.atributetorush.com) to do a charity gig.

Click HERE to see live photos of ANIMATION - "HERE" (Please disregard the dupliacated images. My transfer kinda got messed up.)

They are indeed a great tribute band, and very nice guys!

I'll see what else "Kozmo" has in Ye 'Olde Collection that I can part with.

Oh, and please make offers on the donated gifts. Its for a great cause!

Stay tuned for updates!!!!

Well, nothing good to report about Ken. He's still lingering and having other body parts go kaflooey.... They finally saw the head kahuna at the Milwaukee hospital who handles such neurolgical disorders and he believes Ken's condition has progressed into a chronic state, so now is considered CIDP... a few new meds to try to control a chronic headache and arm tremors. His legs are completely paralyzed now and his face has begun to suffer some numbness and loss of movement (this is similar to other stories of CIDP sufferers I've read... the face can become totally paralyzed, even affecting the eyes' ability to close). I have spoken with Ken a couple of times recently but when I call he's usually resting.

Animation will not be able to hold a separate benefit show in October as we had hoped. They ARE playing a date in Milwaukee (at Shank Hall, on October 20) so go check them out! I've seen them and they ROCK! We're still trying to do something special to benefit Ken's family but so far nothing specific is planned.

The only "good" news to report is that Ken & Dawn are planning to go to both Milwaukee and Chicago shows. We had to buy handicapable seats for them, so ended up selling extra tix in the able bodied seats, but Ken WILL be there! Woo! We'll stay overnight near Tinley Park after the Chicago gig and we all sort of plan on Ken being out of commission for some time after two nights out of three at Rush shows, but we all think it's a needed thing for Ken right now. I'm heading back on Wednesday and STPBL will be joining us on Saturday for a whirlwind jaunt to the south 'burbs of the Windy City and her ONLY show of this Rush tour...

So keep sending healing vibes to south-central Wisconsin... Ken needs the love! If anyone is so inclinded and wants to send a direct e-mail, Ken would love to hear from other Rush fans... Drop a note to: TheSharonFund@Comcast.net

Rock on, Peeps!

*bump*

Thanks for the "BUMP" MitA...

Ken & Dawn made it to both Milwaukee and Chicago shows. The Milwaukee show was a bit of a drag, both because of Ken's condition and state of mind, and the show itself. Ken seemed agitated all night and had a hard time staying focused and calm. I think his meds were affecting him and he seemed sort of vacant most of the time. The show wasn't the best I've seen and it was feakin' hot and sticky so the total experience was less than awesome... But, here is my view back from the 5th row up to the handicapable platform at the top of the first reserved section of Ken and Dawn ROCKIN' out when the lights come up during that one part in the show when the lights come up. Ken's sitting in his wheelchair, arms in the air, and Dawn is standin' and rockin' out!!!


I was really worried that the Thursday experience would make a long trip on Saturday nearly impossible, but Ken got lots of rest on Friday and seemed in great spirits on Saturday morning. STPBL made the trip from Dallas to MKE and I picked her up at the airport before heading over to K & D's place to stage for the trip south. We went to the football game of Ken's youngest son, Noah, in the afternoon, then headed to Tinley Park. The show was awesome and Ken was in much better shape than Thursday. Here are Ken & Dawn during half-time from their h-capable vantage point at FMBA...



I saw Kozmo, RushGirl and Jim, the drummer with Animation, a fine Rush tribute group from Chicago ( Animation - a tribute to Rush ) at the show. We didn't get to spend too much time together, but it was nice to see some Peeps.

The Chicago crowd was AMAZING and the show was top notch... right up there with my northern Cal experiences, so Ken and Dawn had lots of fun. I'm sooooo glad we made the trip and that Ken managed to keep it together enough to enjoy the shows. Now, we just have to ride out the roller coaster as Ken recovers and hope that he's 100% by the next Rush tour...

Le BIMP....

Keepin' it on the front page BUMP...

Keep it on page 1



BUMP, eh!

<<BUMP>>

Huge, you are such a good friend. This world needs more people like you! I was glad to hear Ken made it to the show.

I hope the donatations I made have helped.

Oh..and also.....

ANIMATION is playing at Shank Hall this October (Sat. the 20th) in Milwaukee. I'll be there, and I'll be there again to help anyway I can. Who knows what I'll bring............



www.sharonfund.com

Thanks for the BUMP, Koz! Time for one more... keepin' on the front page...

Yet another front page BUMP...

Generally crappy times for my friend... He has lingered for weeks in the same physical condition with a few new infections and afflictions to add to the fun.

Worst of all, his employer just informed the family that if Ken can't report to work by Nov. 2, he'll be terminated. That's awful financial news as the company has been paying for his health insurance so far. The COBRA payment is $900 per month which will break them... So consider this another plea to dig into your hearts and wallets... I've been selling everything I can to keep money rolling into their savings account, but that won't last much longer... I'm nearly out of extra stuff that's worth anything.

Word on the medical front is that a new neurologist is planning to treat Ken much more aggressively as soon as he can get approvals from the insurance company. This means another hospital stay, and combining treatments on a much more frequent basis in hopes of turning his condition around.

If anyone can or is willing to send cards by US Mail, drop me a P.M. or e-mail and I'll give you Ken's address. The family can use all the words of support and comfort anyone is willing to deliver. Thanks for all your good thoughts and support... and keep 'em coming, eh!

Bimp...

Ken's in the hospital... mostly to clean out the bodily systems that aren't working very well lately. He still faces a change in jobs, but as I understand it now, is being dismissed from the work he was doing before he got sick. When he returns, the company says they'll have something for him, but it almost certainly won't be the same kind of work he was doing... I'm not sure yet what that means as far as his status as an employee, but it's a bit better than I first understood the situation to be.

Ken is home and flushed out from stem to stern... I spoke to him while he was in the hospital but after he'd been roto-rootered clean and he sounded in better spirits than I've heard him since he got sick in March. Maybe he was so full of shit that it made him more sick... I wouldn't doubt that that had something to do with his feeling worse recently. He has been partaking in swimming therapy which seems to help a bunch. He reports that some feeling and strength are returning to his legs and attributes most of that to the water therapy... The job scene is still unclear. It seems that his 15 years of service DO mean something to the owners and that they really want to help in some way. It looks like he'll be out of his current job, but not terminated just yet. But that all has a few weeks to be resolved... I have prescribed a steady diet of Miller High Life, but so far he has not found a doctor to concur with my prescription. W.t.f. does a doctor know about the "amazing healing power of beer"?

Drink on Rush fans. And as Dawnie suggests, be thankful if you pooped today. It's easy to take such a thing for granted... and fairly devastating if said system shuts down...

BUPM.... hic

Yet another BUMP...

I'm heading back to the Tundra of Lambeau Field to see the Packers beat up on the Viqueens on Sunday. I'll stop in to give Ken a hug and see how he's doing and will post an update next week...

And another BUMP...

I hung out with Ken & Dawn for just a couple of hours, but was sooo glad I was able to do so... Ken looked and sounded better than he's been since he got sick. I think the thorough internal cleansing helped get his body's self-healing capability back on track and he seems to be improving. He's also under the care of a new neurologist who is treating his ailment very aggressively. In fact, as I type this, Ken is at the first of 5 daily IVIG (intravenous immunoglobulin therapy) treatments. These are longer and with higher dosage of the meds than before, so hope is that it will help kick whatever is eating away at his nervous system. He'll have more plasmaphorisis next week as well as interferon and steroid treatments, all in hopes of finally stopping the progression of the disease.

Ken has been getting more benficial physical therapy that really seems to help too. Although he still can't walk on his own, he's telling of walking along the parallel bars and with a walker during his p.t. sessions. Part of the therapy is in a water tank which really makes it easy for Ken to support his own weight and use his legs with no fear of falling or injury. He says he's getting some feeling back and I can tell he is using his legs more with a bit less help.

He has officially been taken off of the active payroll of his employer and placed on long-term disability. He is not terminated, but won't likely return to the same job, which is a bit of a drag because he really liked the place, the people and the work there. He also has a promise from the owners that they will pay his c.o.b.r.a. but that hasn't kicked in yet so we'll see if they follow through. I don't doubt they will, but I worry that Ken or Dawn might be interpreting things that are said in a more beneficial way than they were intended.

That's all for now.... You can count on this being at the top of the first page as long as Ken is less than 100%, so get used to it!

Oh, and GO PACKERS!!!

Keepin' it on the front page BUMP...

Ken is done with his 5 consecutive days of IVIG and I guess it kicked his ass, but good. Hopefully that's because it's kicking the ass of his CIDP / GBS ailment... He's been really wiped out so I haven't spoken to him this week but when I do, I'll post an update...

Nothing new to report.... but gotta BUMP it up to the front page, eh!

BUMPin' to the front page....

Ken sounds better each time I talk to him... more and more like himself. He's still not walking but therapy and the IVIG treatments seem to be helping him make progress... baby steps of progress, but progress none-the-less...

I talked to Ken's brother-in-law last week and he tells me that their new doctor is treating as many as 19 different patients with the same problem as Ken, right now, and in the Milwaukee area. That seems like a lot to me, but I guess that is out of a few million local residents, so the percentages are tiny. Anyway, new doc says he'll have Ken walking by spring of '08... wow! That would be awesome, and I know it's possible. I just want Ken to believe it. Sometimes he sounds like he doesn't believe he'll ever get better.... I tell him to keep on keepin' on!

Kickin' it to the top o' the page....

B'BUMP!!!

Way overdue BUMP to the top... I'm traveling but spoke to Ken a couple of days ago. Needless to say,
Christmas was tough for the fam. Cold, crappy weather, lots of shiite with c.o.b.r.a. and payments for treatements have served to make the season somewhat less than jolly. Ked did get a couple of nice gifts from Dawn... a recumbent excercise bike and tickets to see Van Halen in Milwaukee in April. I guess he can sort of make the pedals on the bike go, but so far hasn't got enough ooomph in his legs to register any power on the computer. But, he is using his legs on his own and seems to be making progress. The water tank therapy still seems to be working best and makes Ken feel best. He has tried walking with and without a walker but still has major balance problems, so is pretty much bound to the wheelchair. The best news to hear was that he has stopped taking most of his medications and says he is feeling more alert because of it.

I'm looking forward to an '08 Rush date in Milwaukee and hope Ken can WALK in to the show and be able to enjoy the show properly... on his feet and ROCKIN' oot!

Happy New Year peeps!

B'BIMP to da top, to the top, to THE TOP!!!

With all the concert date activity, I don't expect this will stay anywhere near the top for long, but I'll try to keep it on the radar...

Ken is planning to attend the show during SummerFest on June 27 and I'm going to do my best to get back to join them. I have been in touch by very brief text messages so have little in the way of updates. Sometimes, no news is good news, as Dawn is usually right on top of notifying if things aren't going too well. I called and left a message today and hope to hear back from them soon. When I know more, I'll post again.

I finally spoke to Ken on the phone last weekend and he sounds pretty good. Although he's still not working, he is nearly back to walking on his own. He rides his recumbent exercise bike at least every other day (tries every day but sometimes can't make it happen for fatigue). He does up to 1 mile in the water tank treadmill at therapy sessions and did a lap with a walker around the physical therapy room, otherwise unassisted. He noted that he's eliminated 12 (yes, TWELVE) medications from his habit (not sure how many are left) and he feels far more clear headed than before, although he still suffers headaches that have yet to be diagnosed or remedied. Dawn was tickling his feet a while back and he FELT it, which was very welcome news, and he had an episode of "burning" feet, similar to the sensation you may have felt if your hands have ever gotten near-frozen and then run in warm water. He said the pain was excruciating, but I told him that I think that is the sign of nerves regenerating. I'm worried that the worst pain he's ever dealt with awaits him as nerves start to spark back to life. I've heard from medico friends that nearves re-growing is the most painful sensation possible. And Ken has a fairly low threshold for pain, so I think he's in for some misery... Now might be a good time to get a few hits of the Oxycodone back on the shelf at home. He is set on being back to work and mobile by the time Rush plays SummerFest in June... He finally sounds determined to get back to it... For so long he's sounded ready to give up on everything, so to hear any ambition and enthusiasm for life in his voice is refreshing.

Rock on, y'all!!!

(bump)

i'm behind, but i just caught up on the whole story a minute ago.

i am SO glad to hear that there's some improvement. and it also just makes my heart all warm and fuzzy to know what a caring and generous bunch of people we have on this board. i've been saying it for a long time, but i'll say it again--rush fans are a special breed. i still can't figure out why, but things like this certainly prove it true.

i had a good friend in high school who had GBS, and it is indeed a very long and frustrating road. all improvement is good, though, and don't forget to celebrate the "little victories." so exciting to hear about ken's progress and i hope it continues!

Ba da BUMP!

Thanks for the pin J-! Rock on!

Super great conversation with Ken today. He's sounding better every time we talk and more energetic about getting back into life. He's now walking during therapy using a device to support most of his weight, putting distance on a treadmill. He's also riding the bike at home once in a while and is finally able to keep the pedals turning for 30 minutes using just the strength in his legs (previously, he had to push on his knees with his hands to keep the legs going 'round). The weather in Wisconsin has been brutal so he's missing some of the kids' events but that's winter in Wisconsin I guess. I told Ken that he better be able to stand for 3 hours by June 27! He'll be in the 4th row at Marcus and if he's not standing, it might be hard to see over the heads of the first three rows who aren't likely to sit down... He says he thinks that should be no problem... I sure hope so!

I hadn't spoken to Ken in a couple of weeks but finally got him on the horn today. Although he sounded tired, he reports that his physical condition continues to improve. He had been using a support harness to walk during p.t. but they have replaced that with an elaborately supported walker and Ken has actually walked using only a cane and wall rail for up to 200 feet through the hospital halls. He has also done a lap or two around the p.t. clinic with no support at all! Woo! That is amazing... I told him to be sure to tell his therapist that his goal is to be able to walk into Marcus Amphitheatre on June 27 and then to stand for two 90 minute stretches with a 20 minute break in between. That should get him through the Rush show, and that is ALL that matters right now. Oh, I suppose getting back to work would be on the list too, but making it through the Rush gig up front is #1 top priority right now I'd say... But to hear that he has taken steps, literally, toward getting back on his feet is great news...