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TIM NEEDS YOUR HELP

Hey all you Often Awesome Soldiers,
Tim asked me to get in touch with everybody and make a push for more volunteers for the “Care Connection”- We need to get this moving NOW.
Care Connection is the ALSA designed program that we use to garner the support of the community and provide in home care and companionship for Tim.
You can sign up here: http://www.lotsahelpinghands.com/c/620280/
You will need to apply to the group. I will approve your membership and you must login to the site to be an official member.
Also, it would be very helpful for me if you could fill in this survey: http://www.surveymonkey.com/s/QSNJR3C
This will help me put together a list of members, their schedules and who wants to do what.
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He asked me to be blunt with you. He feels that there have been a significant decline in his health over the past few weeks. His right hand is no longer functional and he doesn’t have a full range of motion on his left side. This means that he can no longer transfer himself in and out of his chair. More worrisome, however, is his difficulty breathing. He is concerned that his lung functioning has decreased dramatically.
Right now, he needs a few things.
1) Cooking- He’s been putting this off to some extent because as we all know, Tim LOVES to cook. There are a few options. We have some tupperware at the apartment that people can take and return with food they’ve prepared at their house. Also, he’s got lots of food in the house and you can come over and cook for him there. And how sweet of a deal is this? Tim is officially the best cook I know and he’s offering cooking lessons to anyone that will come over and cook for him! That’s an opportunity I wouldn’t miss.
2) Companionship- Anyone who is free during weekdays when Kaylan is at work should sign up to just come over and hang out with Tim. He could use it.
3) Laundry.
4) Medical Assistance- Tim is starting to need help in this department. He’s going to need people who can help him transfer from bed to the toilet. He also needs massages and lymph fluid drains. We are in the process of making instructional videos so anybody who volunteers will have a lot of resources and won’t feel like they have to wing it.
5) Kaylan- As we all know, Kaylan is an angel. She’s been more than amazing in her patience and caretaking. But girl deserves a break. Take her out. Buy her drinks. Take her on day trips. Being a caretaker is, in some ways, as taxing as being sick so she needs lots of love and pampering, too. Tim has also requested that if you are worrying about him and wondering how he is, he would love to talk to you about it personally, rather than going through Kaylan.
6) Rides- Occasionally, Tim needs rides to appointments. This is an easy way to help out if you have an inconsistent schedule. You’ll need to be comfortable driving the enormous van.
7) Massages- massage therapists, Tim gets pretty uncomfortable. I’d like to get a list of all of you that want to help and we’ll schedule a rotation.
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If you want to help in a way that isn’t on the calendar, feel free to email me and let me know what you’d like to do. I would love to add an “activity” to the calender that I can assign to you.
I know the lotsahelping hands website feels overly formal. It would be so much easier to just call up Tim and say, “Hey, can I come over and make you dinner tonight?” Right now, however, Tim is really enjoying some level of predictability and stability. It’s a huge source of stress relief to look at the calender and know that his needs will be taken care of for the week. Everyone has different ways to contribute. Some have signed up for paypal giving (and if you haven’t gotten your t-shirt yet, email me and I’ll get on it), some of you come to benefit shows and some of you help with the caretaking. That’s what’s great about having such a big community. Even within the caretaking role, there are various ways to contribute. Giving rides is no less important than helping Tim with personal needs. Do only what you’re comfortable with- because I guarantee you that if you’re not comfortable helping Tim get to the toilet, he won’t be either. I also promise you that whatever you CAN help with means the world to him and to the rest of us that love him.
Love,
lis and the rest of the Often Awesome officers.

Episode 7: Birds Of A Feather

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

Episode 7 : “Birds of a Feather” Tim’s friends find a way to pay homage to Tim and his fight with ALS.

For more information on Often Awesome The Series Click Here

Episode 6 : Friends With Benefits

Often Awesome The Series is a web series about Tim and Kaylans battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

Episode 6 : “Friends With Benefits” Not long after learning of his diagnosis, Tim’s friends organized a benefit show to help raise money for his quality of life care and to create awareness about ALS.

For more information on Often Awesome The Series Click Here

Episode 5 : Decoration Ghost – Part 1

Often Awesome The Series is a web series about Tim and Kaylans battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

Episode 5 : “Decoration Ghost – Part 1″ Tim’s band, Decoration Ghost discusses the origin of the band and the challenges of performing live shows with someone who is battling ALS.

For more information on Often Awesome The Series Click Here

Episode 4 : All In The Family

Often Awesome The Series is a web series about Tim and Kaylans battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

Episode 4 : “All In The Family” informs us about the rare strand of ALS that Tim has. Because of the rarity of Tim’s ALS it qualified him to be a participant at a research study at Emory University for a new drug treatment.

For more information on Often Awesome The Series Click Here

Episode 3: The Luckiest Man

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. It’s a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

Episode 3 : “The Luckiest Man” July 4th, 2009 Tim and Kaylan are invited to the Durham Bulls Athletic Park for Tim to recite Lou Gerhig’s retirement speech during the game on the 70th Anniversary of Gehrig’s retirement from baseball. While there, Tim and Kaylan meet another couple that are battling ALS.

For more information on Often Awesome The Series Click Here

Episode 2: One Man’s Army

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. It’s a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

Episode 2 : “One Man’s Army” introduces us to the Often Awesome Army which is a group of Tim’s friends who put on benefit shows, art auctions and help raise money to provide for Tim’s quality of life care.

For more information on Often Awesome The Series Click Here

Episode 1: Diagnosis

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. It’s a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

For more information on Often Awesome The Series Click Here

SUBSCRIPTIONS!

Hi everybody!
Tim and I had an awesome day on Saturday! We took a field trip to the zoo and then I got my Often Awesome tattoo from the fabulous Nate at Straight A Tattoo! He did such a good job. I uploaded pictures of the day on the group page!
AND, get this! We drove in the van (the infamous ALSUV) that you guys helped Kaylan buy!! You guys have no idea how exciting it was to operate that lift, getting Tim’s wheelchair into the van. The van reminded me of every single benefit show and band and art piece and hug that you guys contributed. Fundamentally, this van is our van, to help us all take care of Tim. It wouldn’t have been possible without you.
There was one problem, unfortunately. The drive to the zoo and back guzzled almost 3/4 of a very large tank of gas. Between the high insurance rates on the van and the cost to use it, I got a little worried about the affordability of it. There really isn’t another reasonable way to get Tim around…
As many of you know, there was a hitch with the paypal subscription. For all of those that signed up to pay $10 a month for a 12 months, you actually signed up for $10 a year for 12 years. We canceled all of those subscriptions and we’ve added some new subscription amounts.
Right now, there are 699 of you that love Timothy enough to be a member of this group. If we can get 40 of you to subscribe to paying $10 a month for 12 months, we’ll be able to cover the insurance, gas and upkeep on the van. Especially for those of you who are long distance and wish that they were around to bring Tim meals or give him rides, this is a great way to contribute and show your love. There is absolutely no pressure for those of you that can’t afford it- there are so many ways to show your support and it certainly doesn’t have to be monetary. But for those of you who WANT to give money, this will probably be the best way to do it.
We’re going to set a goal of 40 subscriptions and we’ll keep you updated every week to let you know how we’re doing. We currently have 0 subscribers but as soon as I press send, I’m going to sign up. So that will be 1/40th of the way there!

As a thank you, I’m going to send out a gift to every single person that subscribes. Send me a message after you subscribe and let me know if you want a sticker, a t-shirt, a patch or buttons. Or any combination of the items. If you want a shirt, let me know what size you want.
Again, this van would not be possible without all of you. I want to especially call out Michael, Devender, Kat and Jessica for organizing the shows, all the artists and musicians that participated, the Green Bean, The Blind Tiger and Greene St. for putting on the shows and giving us a percentage of the bar tab, and each person that showed up. You have no idea how much it all means.
To sign up, go to http://oftenawesome.org/ and click the donate link at the TOP, not the one on the side. There will be a couple of options on that page.
Thank you guys again. We love you!!
Lis (HBIC of the OA Army)
PS- last week, I attended a care coordinator training through ALSA. You’ll be hearing from me soon about assembling a team for the Care Connection program.

NOVEMBER UPDATE

Hello Often Awesome Army!
I hope everyone had a wonderful Thanksgiving weekend!
We have lots and lots of updates for you, so be patient and try to make it through this long email- I’ll send out more details about specifics later.
MOST IMPORTANTLY, TIM’S STATUS:
Tim’s right arm is starting to experience some difficulty. Gripping, turning and unfortunately, playing bass are all affected. However, his lungs are holding steady and that is wonderful news.
A few weeks ago, Tim blew out his knee. They’ve created an orthodic for him (he says it makes him look like robo-cop) and between that and his crutches, he’s back on his feet part time.
He’s making the adjustment from being one of the tallest people in the room to one of the shortest when he’s in his chair. He’s also not sure if he’s going to be able to play bass for much longer. He’s going to try to switch to a keyboard that sounds like a bass. Dealing with wheelchair accessibility in the community has also been an eye-opener. But you guys know Tim, he’s still hilarious and open and tough and whenever he’s in need of a morale booster all he has to do is remember how much his army loves him.
TIM’S PROJECTS:
He’s working on some really damn cool projects . He’s been filming a weekly web series that should come out at the beginning of the year. It’s shaping up to be the Adventures of Timothy and will chronicle his experiences with life with ALS as well as the OA army efforts.
He’s also putting together a badass Indie Rock compilation to benefit ALS Therapy Development Institute (ALS TDI website: http://www.als.net) so anyone that has some fancy connections to a band that sells records and isn’t crap should definitely put us in touch!
OFTEN AWESOME PROJECTS
So far, the Often Awesome Army has had amazing success with fundraising- we’ve had multiple benefit shows, an incredible art auction and the website is live and linked to a paypal site. One of the primary goals at the creation of the Often Awesome Army was to raise money for Kaylan’s ALSUV. Today, Tim and Kaylan will be picking up their new van! So thank you so much to every single person that threw fundraisers, donated venues, gifted via paypal, submitted art for the auction, or just showed up. You guys are amazing and should know that all of your gifts added up to something really remarkable.
We realize that everybody who wants to help has different skills to bring to the table. We’ve had some of our artists donate incredible art to the benefit show. Our tech nerds have done a great job with the website. The musicians have rocked our socks off with great shows. Now, it’s time to move into the next mission.
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Tim is starting to require help with his day to day needs. In the next week or so, I’ll be trained on on the ALSA’s Care Connection program. There is a website called lotsahelpinghands.com and it will allow Tim to make a list of things that he might need. If you would like to join the team, you can request an “add” here: http://www.lotsahelpinghands.com/c/620280/
Help that he could currently benefit from:
-Rides to appointments
-Laundry
-Prepared meals
-Help cleaning and tidying the house
-Companionship- he is home a lot and it would be really nice if people could just come over and keep him company.
-A list of people that would be willing to be on call if there is an emergency and he needs a ride
While we work on setting up our care efforts on the lotsahelpinghands website, you can email me or sign up to volunteer over the next couple of weeks here:
http://tinyurl.com/OA-volunteer*
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OTHER PROJECTS
We are in need of a “product manager” – someone local to commit a couple hours a week to checking online orders, packaging and mailing stickers, t-shirts and other products. We want to put the products on the website so that we can show our appreciation for all of the people that would like to send monetary gifts to Kaylan to help her take care of Tim.
We will be making some changes to our website soon and have been receiving a lot of suggestions. If you have any great ideas, feel free to post them on our volunteer page ( http://tinyurl.com/OA-volunteer ).
Finally, if you have any questions about the art auction, please contact me (or Kat or Jessica) and we’ll get you any information you need.
Thank you guys again for everything you do.

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