lis's blog

TIMMY AND HIS MISBEHAVED LUNGS

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

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.

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.
********************IMPORT
ANT*******************
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*
*****************************************************
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.

UPDATE 9/11/09

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

UPDATE 8/18/09

I’m Lis Tyroler. A couple of months ago, Tim and Kaylan asked me to be in charge of all of the Often Awesome efforts. If you came to the benefit shows, you probably saw me behind the merch table.
Fundamentally, I think that there are two main components of my job.
1) I’m an information hub. I collect and disseminate information, emails, offers to help and advice. I’m in touch with almost everybody that has information or is working on projects. I don’t create or gather most of the information- I just collect and spread.
2) It’s my job to make sure that everyone in the community that wants to help, can. This illness doesn’t just effect the inner circle. An enormous amount of people love Timothy to pieces. It hurts us when we feel powerless and it’s empowering to feel like there is SOMETHING we can do. Sometimes Tim talks about feeling guilty because so much work is being put into the Often Awesome cause. I tell him to suck it up because it’s about us as much as it’s about him. We need this so that we feel like we have a tiny amount of control over something.
As Catie said, Often Awesome is like an octopus and it’s my job to make sure that all of the tentacles are working together to feed the body. Actually, her metaphor was a lot wittier, but totally NOT appropriate for a large audience.
I know how much everyone has been worrying about Tim and I wanted to keep you guys abreast of the goings on over the past few months. A lot has happened so this email is going to be really really long. I will try to update you guys more frequently and hopefully that will make these “newsletters” a lot shorter.
Most importantly, Tim’s health: This is vague because I’m not 100% sure how to talk about this stuff. Tim has pretty much lost the use of his entire right leg from the back down. However, his respiratory health is still pretty good– personally, I like to attribute that to the ridiculous amount of bike riding he’s done in his life. He is currently enrolled in a drug trial at Emory University for Arimoclomol. He’s got a brace, some rock star canes, a power chair, a manual chair… he even takes Smuchit for walks in his power chair!
Tim and Kaylan are being very proactive with Tim’s health! Basically, by being 5 steps ahead of everything that he needs, they are taking control of the uncontrollable and that is a very very cool thing. So don’t be surprised if he has his feeding tube inserted soon. He won’t need it for a long time but, because the procedure becomes more dangerous as his respiratory capacity decreases, it’s a smart idea to go ahead and dive in head first. He’ll be getting a bipap soon, which he will use to help him breathe while he’s sleeping (people also use them for sleep apnea). This is one of the best ways to prolong his respiratory function. He’s even going to go ahead and record his voice for the voice box that he will eventually need. See? Being proactive is awesome.
Kaylan has been an angel. She’s got more wit than you can take a stick at and she’s managed to achieve the perfect balance between telling Tim to walk it off and being the most nurturing, caring girlfriend I’ve ever seen. Plus, she keeps the rest of us sane, which is kind of ridiculous.
So what’s going on with the rest of Often Awesome?
Donations:
I can’t count how many emails I’ve received over the past month, begging us to let you give us money. Why haven’t we had a donation button on the website yet? Basically, because of Tim’s status as a medicaid recipient, we have to be very very careful about how we accept money from people. It is not a donation, it is a “gift” and it doesn’t go to Tim, it goes to Often Awesome– we handle the money and use it for things like buying Kaylan a wheelchair accessible automobile (The ALSUV, as she calls it). Very very soon, we will have a paypal button on the Often Awesome facebook page AND oftenawesome.org and you will be able to gift Kaylan as much or as little as you’d like to help her afford the ALSUV. These gifts will not be tax-deductible.
We have been speaking with lawyers and are in the process of setting up some sort of trust or account that will definitively not interfere with Tim’s medicaid status. For the time being, all money will go directly to Kaylan so that she can purchase a car and drive Timmy around in it.
Carrie Archer and Hugh and Eva LaFollette deserve an award for helping us figure all of the money, medicaid, medicare, SSI, disability, etc… It has been awfully confusing and they have been incredible.
Benefit Shows:
WOAH. You guys really love Timothy. Michael Sileno organized a benefit in July and Devender Sellars organized a Kudzu Wish reunion show this month. The combined headcount was over 600 people!!!! That’s right. It was unbelievably rad. There are videos of songs from both shows floating around on facebook. It was a pretty amazing experience and Tim was so touched by all the love and generosity. Thank you to the musicians, the venues and all of the people that showed up. You guys are amazing.
Merchandise:
Michela Maxwell and Catie Braly designed some incredible stickers, buttons and t-shirts for the events and manufactured the t-shirts with help from the incredible Kate McNeely and others. They haven’t received their cupcakes yet but they will! People at the benefit shows went crazy for this stuff and we’re almost all out! More will be manufactured within the next two weeks.
Remember all of that stuff I said about money earlier? Because of all of that, we don’t sell the t-shirts. We will, however give them to you as appreciation for “gifting” Often Awesome with a certain amount of money. We’re kind of like NPR in that way, except our sense of humor is way more morbid. And SOON, we’ll be able to put the t-shirts online and show our appreciation for your gifts that way!
The Website:
Devender Sellars, along with his team of Scott Hicks and Mae Axelrod, has designed a website- oftenawesome.org. It’s a work in progress, but Devender did an awesome job and is committed to continuing his work on it. We will be adding new features (like a paypal button), as well as a page to show our appreciation for every single person who has contributed to this effort. This email is already way too long and I promise you that even if you weren’t mentioned, Tim and the rest of us are so moved by all of the support.
Thank you again.
love love love!
-Elisabeth Tyroler
****
P.S.
We also have some cool stuff coming up!
Kat Lamp and Jessica Trotman have organized an art auction at the Green Bean. You can check out the call for artwork on the Often Awesome group page.

Syndicate content