RIP Ben Rudin "UncleFrank23"

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UncleFrank23
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RIP Ben Rudin "UncleFrank23"

Post by UncleFrank23 »

Hey all -

If you follow DBT on Facebook, you may have noticed this photo and post from a couple weeks ago.

Image

I am a longtime 9B/3DD member (I latched on during TDS). I used to post more frequently, and while I visit the site almost everyday, I wouldn't call myself a "regular". I've never made the Athens pilgramage, and other than exchanging some PMs with some of you, talking to GW in IA, and meeting RevTodd (back when he was RevTodd) at the TDU show in Madison, I've never met you fine folks (truth be told I may have met more of you at that Madison TDU show, but it easily the drunkest I've been at a DBT show. I barely remember Bingham's set ending :lol: ). I also have been diagnosed with ALS.

In a shortened version of the story (which will be very similar to a story that you've heard if you follow the Mrs GA in IA thread), in early 2011 I experienced some wrist locking and weakness in my right hand. I work on a computer and assumed it was carpel tunnel. I finally went to the Dr in August 2011... went through testing and was given the ALS diagnosis in October. My local Dr suggested I go to either Wash U in St Louis or Mayo clinic for a 2nd opinion. I went to Wash U (we're only 90 miles outside of St Louis), did the testing thing again and in April 2012 the diagnosis was confirmed.

Back to the photo above. There are ALS walks throughout the country, where you form a team and walk a 5K in support of ALS research. I was on vacation for the Springfield IL walk (my hometown) but my family / friends walked in it, and a bunch of us will also be walking in St Louis this weekend. So for my "team" I definitely wanted some sort of DBT theme. I emailed Jenn to get permission to use the logo (which of course they let me - after all this is the greatest band in the world) so my step-mom designed these shirts. The photo above is my brother and dad holding the shirts (they texted me the photo because I wasn't in town when they came in).

The walk was a huge success (even though I wasn't even there). Here's a photo of the team, most of whom had shirts. It's been my running joke that this was my way of getting everyone to where DBT shirts.
Image

So the St Louis walk is this weekend and I figured I would share my whole story with photos of both walks next week after they were both complete. But something so cool happened last night I couldn't wait to post.

I help coach my son's baseball team and last night was our last game (I have 2 boys, aged 12 & 10 - this was the 12 year old's game). So we're the home team and the kids are out in field before the top of the first. All of a sudden the head coach and another parent walk out to the mound without saying a word to me (and they're acting all confused like something was wrong). They motion to the team to come to the mound from their postitions, and after huddling for a minute they take off their regular jerseys and are all wearing the ALS Truckin' with Ben team shirts. It was a big surprise because it was hidden from me that the kids even HAD shirts. And yes, they played the entire game in the shirts rather than the jerseys. Believe me, it is soooo cool to see a bunch of 12 year olds play 6 innings of baseball with a huge Cooley bird on their back! Here's a few photos.

The mound "huddle"
Image

The "unveiling":
Image

The team after the game (I'm the guy on the far left of the photo with the brace on my hand - my son is next to me)
Image

Anyway, I figured if any group of people could appreciate how cool it is to (1) have the band give permission to use their logo (2) have that band post the picture on their facebook page and (3) have a baseball team play a game with the Cooley bird logo, it would be this group.

I have a blog / caring bridge site where I post semi-regular (once a week) updates on how I'm doing that you can feel free to check out. (Almost all of my post titles are DBT songs). http://www.caringbridge.org/visit/benrudin Now that this thread is started maybe I'll post some random updates. I'll be at Patterson's solo show in Chicago in September. Maybe I'll wear my shirt and try to get a picture with him to post here. :D Thanks for reading my rambling, thanks to DBT, and thanks to 3DD. While I haven't been the most active member, this site (and 9B before it) has been a huge influence on my musical taste (and broadened my horizons) and has provided countless hours of enjoyment.

Ben
Somewhere between anguish and acceptance.

beantownbubba
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Re: Truckin' With Ben Against ALS

Post by beantownbubba »

Oh fuck! Two people on one board w/ fewer than 1400 members?

:( :( :(

As we are already painfully aware, there isn't much we can do, but perhaps we can buy some of those t-shirts?

Best of luck to you and your family, Ben. And thanks for the pics and letting us know.
What used to be is gone and what ought to be ought not to be so hard

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Beebs
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Re: Truckin' With Ben Against ALS

Post by Beebs »

Thanks for sharing Ben. That damned little league team is choking me up.
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Re: Truckin' With Ben Against ALS

Post by Tequila Cowboy »

Ben, I think we have met but I'll be damned if I can remember where. Thank you so much for posting these pics. Amazing. If there's anything we can do you just let us know and I'll see you in September. Good thoughts and vibes headed your way.

ALS sucks.
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UncleFrank23
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Re: Truckin' With Ben Against ALS

Post by UncleFrank23 »

Tequila Cowboy wrote:Ben, I think we have met but I'll be damned if I can remember where.


It's quite possible. Usually St Louis is my preferred destination because it's closer, but I saw them at Metro during the Home Front tour. Alcohol and turning 40 have made the memories hazy.

Perhaps I'll get to the January 2013 Homecoming (assuming there is one) if my health keeps up. After hearing about them all these years I want to make one. (Although my wife is people-claustrophobic, so the 40 Watt doesn't exactly look like her cup of tea :lol: )
Somewhere between anguish and acceptance.

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Penny Lane
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Re: Truckin' With Ben Against ALS

Post by Penny Lane »

thanks for posting, UncleFrank! I'm so sorry that another person from here is afflicted with that. ..
Kudos to the band for their support and good luck to you in your battle. Please keep us posted and maybe copy and paste the blog into this thread? I know we'd like to always have you and Mrs. GW in our thoughts but we are a lazy bunch sometimes.. and if you make it to Athens, we'll set up a special place in the back for your wife so I won't be spilling beer on her and shouting in her ear (i've been known to do that..)

Bubba--maybe you can post your Bryan updates in a thread, too? Just thinking out loud..
In my blood, there's gasoline..

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Jonicont
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Re: Truckin' With Ben Against ALS

Post by Jonicont »

beantownbubba wrote:Oh fuck! Two people on one board w/ fewer than 1400 members?


Oddly enough Bubba, Ben is #3. The wife of a Long Island 9B member passed a few years ago. If you were at the Dirt Underneath show in Amagansett, you may remember her in the wheelchair. Positive thoughts being sent your way Ben
Always go to the show

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one belt loop
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Re: Truckin' With Ben Against ALS

Post by one belt loop »

Ben, so sorry to hear the diagnosis, and I'm sending my best California good vibes your way (even though I am in Paris for one more night). I think bubba's idea about selling us some tshirts to support you is a great one. Any chance of that?

I am pretty darn sure Athens '13 is going to happen and it would be so great to have you there.
Matt playing like an evil motherfucker w/ rhythm with a capital MPLAEMWR.

- bubba

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'Scratch
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Re: Truckin' With Ben Against ALS

Post by 'Scratch »

Beebs wrote:Thanks for sharing Ben. That damned little league team is choking me up.


Damn, same here. Monitor's all blurry for some reason.

You keep fighting the good fight and I'll keep rooting for you...and Mrs. GW in Iowa. Fucking ALS. If I had a lamp and a wish I'd give it over to the both of you and your families.
Not forever, just for now.

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GW in IA
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Re: Truckin' With Ben Against ALS

Post by GW in IA »

Glad you came out of the closet Ben :D
Hope things are good as can be with you guys.
Reluctantly, our hero rises to the day, with a moan and a curse to an absent God.

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Re: Truckin' With Ben Against ALS

Post by bovine knievel »

Thanks for sharing the story, Ben. ALS is muthafucka. Wish the best.
“Excited people get on daddy’s nerves.” - M. Cooley

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Penny Lane
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Re: Truckin' With Ben Against ALS

Post by Penny Lane »

one belt loop wrote:Ben, so sorry to hear the diagnosis, and I'm sending my best California good vibes your way (even though I am in Paris for one more night). I think bubba's idea about selling us some tshirts to support you is a great one. Any chance of that?I am pretty darn sure Athens '13 is going to happen and it would be so great to have you there.


Yes for both counts.
In my blood, there's gasoline..

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bovine knievel
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Re: Truckin' With Ben Against ALS

Post by bovine knievel »

Penny Lane wrote:
one belt loop wrote:Ben, so sorry to hear the diagnosis, and I'm sending my best California good vibes your way (even though I am in Paris for one more night). I think bubba's idea about selling us some tshirts to support you is a great one. Any chance of that?I am pretty darn sure Athens '13 is going to happen and it would be so great to have you there.


Yes for both counts.


I'm in for a shirt!
“Excited people get on daddy’s nerves.” - M. Cooley

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Cubfan06
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Re: Truckin' With Ben Against ALS

Post by Cubfan06 »

Ben, all the best to you during this difficult time. We'll have to meet up for a beer (or wine) at the Chicago City Winery Patterson show. Look forward to chatting with you.

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Re: Truckin' With Ben Against ALS

Post by UncleFrank23 »

First of all thanks for sending the positive vibes and thoughts. It's weird, when it comes to serious situations like this, I've usually been the one on the "sending" side of of the equation. Now that I'm on the receiving end, I realize just how meaningful a little phrase like "thinking about you" really is. (And GW - your out of the closet comment almost made me spit out my drink)

In regards to the shirts, we got a break from the t-shirt place and they gave them to us for $5. We've only accepted $5 for them (and that's only because I don't want my step-mom on the hook for 150-200 t-shirts.) I'm not sure if we're putting in another order or not, but if you're interested send me a PM and I'll let you know one way or the other if we can put another order in. I'm not sure I'd want to take more than $5 because I specifically told Jenn I wouldn't sell them for a profit, plus I didn't come out (as GW would say :lol: ) so I could hit you all up for donations.

As far as Athens, I've got 6 months to keep my fingers crossed that my health holds up. Hopefully that's enough time to convince my wife the 40 Watt isn't THAT crowded!
Somewhere between anguish and acceptance.

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Re: Truckin' With Ben Against ALS

Post by Jonicont »

We can put your wife in a circle of trust--or leave her in the hotel :lol:
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sg207
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Re: Truckin' With Ben Against ALS

Post by sg207 »

GW in IA wrote:Glad you came out of the closet Ben :D

:lol: :lol: :lol:

This thread needed that comment, GW!

As others have mentioned Ben, I don't really know what to say, but me and my family will be sending positive vibes your way. Hopefully Athens in '13 will work out for you as well.

And yes, the 40 Watt really is that crowded. So, you probably need to lie to you wife. :twisted:

Or have BTB talk to her, he's good with all them fancy words.
Just put the goddamn record on and enjoy it

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GW in IA
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Re: Truckin' With Ben Against ALS

Post by GW in IA »

You hold up enough to make Athens, and we'll let both wives stay at the hotel :lol:
Last year Patty and I went, and she only did one show. She had a blast none the less.
Reluctantly, our hero rises to the day, with a moan and a curse to an absent God.

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Re: Truckin' With Ben Against ALS

Post by Mr. B »

Ben,

Thanks for sharing. I enjoyed reading the entries on the blog. I recognize you from the pictures on the blog -- we've definitely stood near each other at some midwest shows. Hope to see you at the Chicago shows.

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Re: Truckin' With Ben Against ALS

Post by UncleFrank23 »

Hey - all just a couple updates. First of all the St Louis walk was a huge success. I was actually one of the three ribbon cutters, and we ended up having upwards of 60 people on the team. (See photos below). WIth the exception of my cousins, most everyone had to make a 90 mile drive to participate (not even accounting for some Chicago friends that came down as well), so it was a pretty humbling and overwhelming experience. I kept joking with everyone that any time you can get up early on a Saturday and drive 90 miles to walk 3 miles in 105 degree heat with intense humidity, you have to do it!

There was a band playing at the ceremony and they commented on how cool our shirts were. Also, there was a guy there that walked by himself (he didn't register with a team) that recognized the Trucker references and said they were his favorite band. I didn't get much of a chance talk with him (I had so many family and friends there), but I know he talked to a lot of the people in our crew. Dude - If you happen to be on 3DD, send me a PM.

Speaking of the t-shirts, we are in fact placing another order. They are $5.00 so if you are interested send me a PM with your size and let me know. I'll get all your contact info after we place the order. If you happened to place an order through the original facebook post, there is no need to reorder. My brother got those messages, and I honestly don't know if it was anyone on here.

Lastly, thanks again for the notes, PMs and well-wishes from all of you. I do have a very stong support system of family and friends, but the thoughts and kind words (and overall interest in my story) from you folks are very meaningful as well.

Ben

The ribbon cutting (and yes, I HAD to wear my Cub hat in the middle of Cardinal nation :lol: )
Image

The St Louis team:
Image
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Re: Truckin' With Ben Against ALS

Post by Tequila Cowboy »

Awesome Ben! Nice work! I'm going to talk to Lurleen and then get in touch for a couple of those shirts.
We call him Scooby Do, but Scooby doesn’t do. Scooby, is not involved

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Re: Truckin' With Ben Against ALS

Post by Lurleen McQueen »

You are in all of our thoughts and hearts Ben! Can you please include a link to your donation website in case we want to give more than the $5?

Thanks for sharing your news with us. I hope we can wrap you up in "virtual" hugs and love until we see you in person for real live hugs.
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Re: Truckin' With Ben Against ALS

Post by beantownbubba »

If you're raising money to support ALS research or care, that's not a profit making venture, Ben. I object to paying only $5 for a shirt, but would be happy to pay $15 or 20. Think about it.
What used to be is gone and what ought to be ought not to be so hard

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one belt loop
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Re: Truckin' With Ben Against ALS

Post by one belt loop »

beantownbubba wrote:If you're raising money to support ALS research or care, that's not a profit making venture, Ben. I object to paying only $5 for a shirt, but would be happy to pay $15 or 20. Think about it.


I'm with you, bubba.
Matt playing like an evil motherfucker w/ rhythm with a capital MPLAEMWR.

- bubba

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Re: Truckin' With Ben Against ALS

Post by GW in IA »

As usual, Bubba figures out how to say what I was thinking. Seriously Ben.
Reluctantly, our hero rises to the day, with a moan and a curse to an absent God.

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Re: Truckin' With Ben Against ALS

Post by UncleFrank23 »

All right, at the convincing of you all here's what I'll do... The shirts cost $5.00 to make. If you want me to order you any, send me a PM with your sizes (I've received a few already, no need to send me another PM if you already have - I'll be responding with delivery info soon). Since you've suggested charging $15 or $20, if you send me more that $5.00 (regardless of amount) I'll take the difference and donate it under the St Louis Truckin With Ben team. I'll pool all the extra together and put it under "The Three Dimes Down Crew" or something like that.

If you'd rather donate directly, the link to the team is below. Click on my name (Ben Rudin) and then on "Donate to Ben".

Thanks to all of you for your support. Also, someone donated to my caringbridge site under "A fellow DBT fan". There is no way for me to tell who that was, but given the timing I have to assume that it's someone from this message board. So whoever you are, a heartfelt thank you.

Ben

http://web.alsa.org/site/TR/Walks/SaintLouis?team_id=221401&pg=team&fr_id=7817
Somewhere between anguish and acceptance.

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Lurleen McQueen
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Re: Truckin' With Ben Against ALS

Post by Lurleen McQueen »

Are you Ben S? Just trying to get to the right page to donate. Thanks!
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UncleFrank23
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Re: Truckin' With Ben Against ALS

Post by UncleFrank23 »

I'm actually Ben Rudin. There is a link below that will take you to my page, (rather than the Truckin' With Ben team page).

Thanks again for all of the support and kind words.

http://web.alsa.org/site/TR/Walks/SaintLouis?px=3479545&pg=personal&fr_id=7817
Somewhere between anguish and acceptance.

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Re: Truckin' With Ben Against ALS

Post by sg207 »

Hope all is well, Ben!
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UncleFrank23
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Re: Truckin' With Ben Against ALS

Post by UncleFrank23 »

Hey all - I've been away from the site for awhile, and when I've been on I've just been checking the usual places (tour dates, show streams, etc.)

I thought I'd give an update, but to be honest I also feel like I need to vent somewhat "anonymously" so I hope y'all will bear with me.

First of all, for those of you that ordered shirts, they are still being ordered (I tried to PM those that did, but I think I might have missed a couple). Since the company is doing them at such a discount, we said it would be all right if they just worked them in when they could.

So what's happened in the past couple weeks. Based on advice from a family counselor, we had to have a serious conversation with my boys (age 10 & 12) about what is really going to ultimately happen to me. We've obviously told them I have ALS and that it would get worse and I'd be in a wheelchair, but everything else was unspoken. It was both much more difficult and much easier than I thought it would be. (Saying the words was harder, but the air that was lifted getting the elephant out of the room was a positive I wasn't expecting). As a side note, here's an example of why I'm talking about this on here - when my wife told her dad about the conversation all he could say was "How can you say that aloud?". They understand what's happening and are not in denial.. but they don't really want to address it.

My left arm is getting very weak, and my right is almost useless (I can still type with one finger on my right hand). It's been a bit of a struggle. So that leads me to venting... I get a lot of people asking how I'm feeling. (co-workers, family, etc). This is not to disparage any of them or call them insincere. All of them are coming from the right place and I believe they are all genuinely concerned. But I also feel like honest answers to that question make people very uncomfortable. If it's a good day, then I'll just say "i'm doing well", if it's a bad day I'll just say "I'm hanging in there". No one wants to hear "this morning I had to get my wife up earlier than normal because I had to open a new tube of toothpaste and it was too tight to unscrew" or "on the way home yesterday I almost had to ask for someone to unscrew my gas cap for me to fill up my car" or "guess what, at work I can't use a urinal because my fingers are so weak I have to stand there so long to unzip it looks like I'm playing with myself". All of these things have happened in the last few days.

Yesterday I had to give a presentation at work. It's kind of a joke that when I speak in front of a group I move my hands a lot, so much that I have to make an effort to not move them or it can be a distraction. After my presentation yesterday, a co-worker (who I like a lot and mean absolulely no ill-will towards) noted I did a good job limiting my hand movement. It was a reminder of how easily removed people are from this. He knows my situation but didn't put 2 & 2 together... I didn't try to limit my hand movement.. I don't have that kind of movement any more.

On the postive side, last Friday I played poker for the first time since December. I'd been in a poker league for the last few years but had stopped playing because I was self conscious about not being able to shuffle or deal. (I play no-limit hold 'em, so the actual play is ok since it's only 2 cards). People at the table took care of shuffling and dealing for me without me having to ask, so it was really nice. Plus out of 14 people (2 tables) I finished 3rd in game 1 and won game 2, so that made it more fun. :lol:

You know, I actually had more to vent about, but just typing this post has made me feel better so I don't even need to. Maybe some anonymous venting is all I needed (since it's probably easy to see that I'm typing as I go). Thanks for listening and for all the thoughts and wishes y'all have given me. Now back to more fun threads, like Patterson/DBT tour dates, MLB 2012, and the listening thread.

Ben
Somewhere between anguish and acceptance.

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