Housing, Bringing the House Down and Dr. House.

May 20th, 2010 Everything Else Lis no comments

Oh, you amazing Often Awesome Soldiers. Each day, your love, generosity and support for Tim gives me renewed faith in humanity. In appreciation, here’s the update on our Timothy.

If you only have time to read a little bit, read the first paragraph now and save the rest for later!!

Most importantly, Tim is looking for new digs. He has a wonderful apartment but the space just isn’t appropriate to his needs. He’s looking for a house to rent, preferably with a finished basement or a second floor. Because people are in and out of the house all day, it would be really nice for there to be a space for guests or Kaylan to go that is somewhat separate from the hustle and bustle of Tim’s care. It needs to have either a REALLY big living room or a HUGE master bedroom. Also, large dogs must be allowed. Other than that, it would be nice if it had a fenced in yard but it doesn’t need to be wheelchair accessible as we can always build a ramp. We were thinking about a budget of $800-$850 but we’re willing to be flexible. Tim is housebound most of the time and it’s really important for he and Kaylan that their living space feels like home.
If you have any leads, please post them here: http://www.facebook.com/topic.php?topic=14844&uid=80514396190

A few other things to mention:

- The benefit show was a wonderful success, filled with incredible music, amazing people and fabulous t-shirts and raffle prizes. Michael Sileno really is the Often Awesome Benefit Show Hero. The show was recorded and filmed and I’ll have more info on how you can get your hands on the media at a later date. You can read Tim’s speech from the event here: http://www.facebook.com/profile.php?id=2709544&ref=ts#!/note.php?note_id=393297307333&id=542074685&ref=mf

- Tim’s daily care is coming along quite nicely and we have a fantastic rotation of people that come by daily, weekly or monthly and make sure that Tim’s needs are met. If you have something you’d like to do for Tim and don’t see an available slot on the calender, feel free to message me and we’ll create an event just for you.

- Tim wants to get on Ellen!! We’re going to write a summary of Tim’s story and then have the OA army hit up her website and start rallying for Tim to be on the show. If you have any connections to the Ellen Show, let us know!

- There is a movement to get Hugh Laurie to be the spokesperson for ALS (his mother died of it in 1990). Join the facebook group here: http://www.facebook.com/topic.php?topic=14844&uid=80514396190#!/pages/Hugh-Laurie-for-ALS-Spokesman/114429061932929?ref=ts

- Jonathan Moore has set up an account at Ed McKay’s in Greensboro. Here’s a note from him:
“Hello everybody, I just made a page in the Schools/Non-Profit Trade Credit Book at Ed McKay’s in Greensboro. This is a way for people to donate credit to Often Awesome that Tim and Kaylan can use whenever they need to. Basically the way it works is that anybody can bring items to Ed McKay’s, ask for credit, and ask for it to be donated to Often Awesome. We will put it in the log book to keep a record of it and Tim and Kaylan can come in anytime to use it. Right now it will only be possible to bring stuff to the Greensboro location for this, but in the future, we might be able to get the other stores on board as well. If anybody has any questions, please let me know, and spread the word around so we can start building up some funny money!”

- Nate Hall is opening up a tattoo shop in Greensboro and will soon be having a big grand opening event. Since he was instrumental in starting the whole swallow tattoo movement, let’s all make sure to support the new shop!

I’m sure there is a lot more I should update ya’ll on but I’ve run out of steam! Keep being amazing and don’t forget that it’s your love and support that make this all worthwhile for Tim.

love love love,
lis

Duke Appointment

April 20th, 2010 Everything Else Lis no comments

Dearest Army,

Tim had his appointment at Duke today and the news was not good. Since his last appointment a few months ago, his respiratory function has dropped significantly, from 77% to 41%.

The rate of decline came as a shock but it does have it’s benefits- medicaid will now pay for Tim to get a BiPAP and a feeding tube. Tim’s ability to swallow is currently unaffected but the earlier he gets the feeding tube the easier his recovery from the procedure will be.

Last week, Tim told me he was going to have to quit playing music soon. He said to me, “People say that just because I’m a musician, it’s necessarily not my identity. I thought, what am I then? And when I thought about how I really defined myself, I realized that at my core, I am a social creature.”

He went on to remind me that as long as I’ve known him, he’s always preferred for people to come over to his house and hang out while he stayed in his pjs and cooked for everyone. Now people cook for him, but the concept is basically the same.

Now is the time that Tim needs to be around people. Around the clock, Tim needs at least one person around who acts as a “caregiver”- but he also just needs people to come by and hang out. You can always call him or me directly to see if he’s free, but if you want to schedule a weekly, biweekly or monthly hangout date, let me know and I’ll put you on the calendar.

Thank you, Army, for all that you do. Your support means more to Tim than you can imagine.

love,
lis

PS- If you’d like to join our care effort, sign up here:

http://www.lotsahelpinghands.com/c/620280/

Timmy and his Misbehaved Lungs

April 13th, 2010 Everything Else Lis no comments

Tim has had a rough week. His breathing has felt shallow and he’s been exhausted. While I was at the apartment yesterday, he had a cough but he was really struggling to muster the lung capacity to push out the cough. Today, his primary care physician saw no sign of infection and they sent him for a CT scan to check for a pulmonary embolism.

The good news: Nothing even slightly resembling a pulmonary embolism- which is fantastic.

The not great news: 20-35% of his lung is known as a pulmonary sequestration or a sequestered lung. The way Tim described this to me, it’s basically lung tissue that thinks it’s its own lung, but isn’t actually connected to the airways. It’s a congenital condition and the doctors say that he’s been operating at 70% of his potential lung strength for his entire life… which is pretty impressive when you consider how hard he rocked his very first respiratory test after being diagnosed with ALS. If he hadn’t gotten ALS, he probably would never have had a problem with it.

Tim’s response was basically- “Eh, whatever. What else are you going to throw at me, world? So I have a rare terminal disease and a congenital defect in the most important organ to someone with ALS- what else you got?”

Also, his doctor feels like there is absolutely no reason for another dramatic drop in lung capacity outside of the natural progression of the disease.

About the exhaustion-
Most of you know that Tim and Kaylan just took their honeymoon in Scotland. Traveling is exhausting for the healthiest amongst us and Tim took this trip with the full understanding that it would take a toll… but just because you have a terminal illness doesn’t mean you shouldn’t live while you can. So he made a small sacrifice for two of the best weeks of his life.

He feels like he can regain a lot of his energy and lung capacity by resting and not doing much drinking. He needs to be very careful about going out of his apartment, especially with the blizzard of pollen we’ve had lately. Also, going out is just friggin’ stressful, especially when you’re in a wheelchair and you don’t know whether you’ll be able to get in and out of a building. So, he will be home resting and you should visit him if you have some free time. He’s a social creature by nature and just hanging out with him is one of the best things you can do to help him.

If you want to schedule regular visits, you can email me (info@oftenawesome.org), call me 336.339.9668, or you can join the lotsahelpinghands website ( http://www.lotsahelpinghands.com/c/620280/ ) and sign up for visits. If there is a time you’d like to come by or something that you’d like to do that isn’t on the list, let me know and I’ll create your own special event on the calendar! 3-6pm on weekdays is a particularly good visit time- it’s after his CNA leaves and before his beautiful wife gets home from work.

Also, about the Lotsa Helping Hands website- once you sign in, I have to approve your membership and then you MUST log in to be considered “confirmed” and thus an active member on the site. If you don’t log in, you won’t get any of the emails I send out through the site. About 1/4 of you that have signed up aren’t official members yet because you haven’t logged in. The interface of the site leaves a bit to be desired but it’s a pretty magnificent idea all in all and it’s been wicked helpful to us so far.

Much love,
lissy

Tim needs your help

April 5th, 2010 Everything Else Lis no comments

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.
————————————-
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.

————————————–

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.

Tags: Care

Subscriptions!

December 15th, 2009 Everything Else Lis no comments

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

November 30th, 2009 Everything Else Lis 1 comment

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.

********************IMPORT

Technical difficulties with the autodraft paypal

November 13th, 2009 Awesome Army Action admin no comments

OA Army,

Thank all of you so much for your continued support.  We recently discovered that the autodraft button that we created for those of you who so generously decided to help support Tim on a monthly basis is not working properly.  The error was that instead of a $10 donation every month, it would instead create a $10 donation once a year.  We have since corrected this error.  We would like to alert anyone who has signed up for this autodraft to cancel that subscription and to re-signup for the new one.  Thank all of you again for your understanding in this matter.  If you require specific instructions on how to cancel a subscription please add a comment to this post and someone from the admin team will assist you as soon as possible.

-Will

[Edit: We have proactively stopped all existing subscriptions through paypal, please go to the donate page and click the subscription button to launch the paypal website to sign up again. Thanks! -Will]

Calling the OA Army!

October 8th, 2009 Awesome Army Action, News admin no comments

Hi everyone, we are pleased to announce that the blog is now open to anyone who would like to contribute.

If you would like to write for the blog simply click the register link on the right and create your own unique username. Please make all efforts to not offend anyone as any posts that are deemed inappropriate will be taken down and reviewed. We want this to be a place of communication and above all else, FUN!

Thanks,

Your friendly neighborhood admin.

Call for Art (From Kat Lamp)

September 11th, 2009 Events Lis no comments

Hey All-

Through the month of October, The Green Bean will be hosting a silent art auction benefit for Tim LaFollette. Proceeds go to help the Often Awesome Army to help support Tim in his fight against ALS. Find out more about Tim’s fight here:

http://www.oftenawesome.org

http://www.facebook.com/group.php?gid=80514396190

If you wish to contribute your art, please refer to the guidelines below, and message me back so we can get an idea of how many folks will be contributing.

We appreciate your support!!

Thanks,
Kat Lamp

**** ART GUIDELINES****

You may contribute one piece of your ORIGINAL artwork, no larger than 11”x14” (frame included.)

Artwork must be framed, or ready to hang.

Artwork can be dropped off at The Green Bean between now and Monday, September 21
(341 S Elm St. Greensboro, NC 27401-2603 336.691.9990) If you’re from out of town and need to ship your art, please gives us a heads up so we can make arrangements.

**** Please attach a SEPARATE sheet of paper to the back of your art with the following info: (Please write legibly)

Artist Name

Title of Piece

Email address

Phone Number

Bidding starts at $25

Tags: Art, Benefit, Fundraiser, Green Bean

Update 9/11/09

September 11th, 2009 News Lis no comments

Hello all! I apologize for another overdue update on Often Awesome!

I’ve got lots of exciting news!

Gifts:

Often Awesome can now accept gifts! For all you members of the Often Awesome Army that have been itching to give Kaylan funds to buy a wheelchair accessible automobile (the ALSUV), we now have a fancy “donate” button on the website!

Also, if you want to get really fancy, you can sign up to give 10 dollars a month for 12 months. That’s right, our web officers are pretty darn impressive, huh? Devender Sellars, Mae Axelrod, Scott Hicks and Carrie Archer did an incredible job getting this website to the state it’s in and they deserve many batches of cupcakes.

Will McChesney has created a blog for the website. Only Often Awesome Officers can create blog posts but anyone is welcome to comment. You can register if you don’t feel like filling in your information each time you comment, but it’s not necessary. William deserves cupcakes with buttercream, ganache AND filling!

www.oftenawesome.org

Tim’s Health:

Tim went to Emory a couple of days ago and got wonderful wonderful news. There has been absolutely no progress of the disease. When Tim gets stressed out, his symptoms are exacerbated (even his throat has started twitching). I guess it’s probably not a good idea to spend an afternoon poking him or doing whatever else it is that stresses him out.

As many of you know, Tim and Kaylan are getting married!! No date has been set, although they have decided that the ceremony will be immediate family only and there will be a big party for all of us friends. It’s Tim and Kaylan, so you know the party will be awesome. Congrats, our darling LaFranskis!

Events:

Don’t forget, the deadline for the art auction is approaching!

Holly Azzara sold merch and prints at Little John’s Tattoo Convention this past weekend and we are very very appreciative of the effort and the sentiment. Thank you, Holly!

Joel Collins allowed Michael Sileno, Kellie Gerringer and I sell merch at the Snakes Eat Rats show. Thank you, Joel!!

Dan Savage mentioned the website on the Savage Lovecast and we got lots of messages and donations. Thank you, Dan, and all of you who are now invested in Tim’s well being because of Dan.

As always, I don’t think our Timothy would be thriving as much as he is without the endless love and support of the entire Often Awesome Army. So thank you all.

love,
lis tyroler