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Episode 27 : Any of Us Can Do It

Episode 27 : “Any of Us Can Do It” — More members of the Often Awesome Army find creative ways to raise money for Tim’s quality of life care.

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.

For more information on Often Awesome The Series Click Here

You're too good, soo...

last time i sent a message about the cyst under my armpit, i literally woke up the next morning to a tiny, shivled and sweet old lady holing a scalpel. "i hear you have an owie! " she said. no exaggerations. i had written the request a one in the morning and here it was eight something and she's ready to cut.

point is everyone i know seems to have a connection to someone i need to get in toch with. this one's a bit more of a hail mary, but you far away folk get to help on this one.

as many of you know, or knew me prior to tis fucking disease, i was a mac user. not the snobby rich type, i used macs for my profession and hobby, video, but my passion as well, music. apple prides and touts itself as an accessible company. for the most part, they are. but no eye tracking. i have been writing the accessibility department for about a week now. no response thus far. it just seems to me that with the number of diseases that render immobility, they would like to be at the cutting edge of this new technology.

now i'm not suggesting a letter writing campaign (yet). testing the limits of our connection, i would like to know if any of you know an apple insider? i would like a virtual meeting with as high as i can go in the accessibility department, hopefully the top. long shot but does anyone know anyone (who knows someone ) to help? just checkin'. you seem to know everybody.

with love, tim

http://www.youtube.com/watch?v=4-FpROeybeI

ok, so a lot of you know apple folk. forgot to attach link to the trailer. please send this to them to better inform them. and lord almighty, you can't begin to understand my appreciation. i swear, i should ask if any of you know a cure.

with love, tim

[reposted by admin]

MRSA and Me

good kids book name, no?

let me start by saying i wrote that letter last night expecting a collective laugh or sigh. that was a non-catholic hail mary. never in a million years did i expect to wake up with a sweet old lady above me with a scalpel. yes, that's correct, in less than ten hours a doctor was here to cut me up and shove a wound tampon (packing material for those more mature than me) in me.

the often awesome army has no medals... yet. but we're going to start now. the winner of the first medal of honor (to be renamed later) goes to miss abigail harris. for those that don't have the pleasure of knowing abby, she is one of the swetest, kindest, beautiful, FUNNY, women you'll ever meet. she's also the mother of two amazing children. and she's studying so that one day she can scare waking cripples with scalpel. abby, the army salutes you soldier. if you would like to meet abigail harris, get a massage from her at massage envy on lawndale. she's an amazing therapist. go find out for yourself!

i'm in tears now, which is not only from my painful armpit, but from my gratitude (and i cry really easy). what a lucky, undeserving bastard i am. thank you army. thank you abby. thank you dr. zeller. now its time to take pain meds. and i gots goooood meds.

eternally indebted,
tim

[reposted by admin]

Calling Local Army Members

local army members. over the past year, i have requested help with all sorts of crazy things. web services, dentistry, butt paste, etc,. but this one takes the cake. and if someone manages to find help, it'll eat the cake as well.

as most of you know, my pain threshold is at it's limit. the end of the pain chart with the guy with the shit-taking face? that with flames out the ears. nd no, this isn't a call for drugs. it's wierder.

i know have a cyst under my armpit. the kind that hurts like a mofo and needs to be lanced with a scalpel and stuffed with packing material to drain all that blood and puss (i refer to that affectionately as wound tampons). however, moving me right now is not only difficult, but very painful, even without this.

here's the impossible request. does anyone know a doctor, yes a doctor, willing to take enough pity to lance this at home? i come with my own nurses, insurance, and witty banter! extra pay fior makin a house call.

the thought that one of you may know my savior, but free case of beer /bottle of wine finders fee. from what i remember, any discapline can do it. inject lidocaine, scalpel cyst, pop like massive zit, insert wound tampon. so if someone is not only well connected enough to know a doc, but one withh a huge heart please let me know. i'm dyin' here, nyuck nyuck.

tim

[reposted by admin]

Episode 26 : A Year to Remember

Episode 26 : “A Year To Remember” — After a year of documenting Tim with ALS we put together a retrospective of the progression of ALS this past year.

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.

For more information on Often Awesome The Series Click Here

Supporting those who support us

Everyone who knows me knows the rant. big pharma will never cure ALS because there are too few of us to make a profit. but there are companes that do care enough about us to do what they can to support us. tobii ati is one of those companies.

tobii is going to be provide me with a new computer that will free me from the shackles of als more than anyone else. this new, compact, portable computer that will allow me to communicate and more everywhere i go. they are a company who is constantly searching for new ways to support people like me.

my friend at the company, carl, has recently created a facebook page to connect patients, caretakers, and those who care about their continuing quest to support those like me. please help me support them by joining the tobii ati community page. click on the link and join the page and lets show them what we got, army!

tim

http://www.facebook.com/pages/Tobii-ATI-Community-Page/173912962622674

Episode 25 : The Last Hurrah

Episode 25 : “Last Hurrah” — Decoration Ghost performs a private show for Tim after having an amp fail at a Homecoming performance that Tim attended.

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.

For more information on Often Awesome The Series Click Here

Updates from OA

Hello, darling Army

No major health updates today, we’re just writing to give you some information.

Most importantly, a lot has changed with Tim’s care needs since the original trainings. I know a lot of you have messaged me to let me know that you are interesting in taking on some caregiving responsibilities. We’re getting ready to schedule some new trainings and I would like to get all of our volunteers in one place. Will you email me (lis) at info@oftenawesome.org ? Please put “care training” in the subject and include all of your contact information in the body (phone, email, facebook, everything). Also, please note your schedule availability for both training and care.
_________

Tim wanted me to put in a special request to our army asking you guys to join and donate to this very special cause:
http://www.causes.com/causes/547485-adopt-an-als-family-winter-fundraise...

From Michele Dupree:
“I am just overwhelmed with devastating emails of people literally in poverty due to ALS. They're overwhelmed with how they will pay for heat or food- and can't even think about the holidays. It's so sickening! anyway- if you would- every penny counts and we need an army here!!”

_________
Also, Kate McNeely wanted me to share a few things with you guys:

“As you all know, we have several things ongoing to promote ALS awareness right now.
Wednesday night, Fox 8 News, WGHP, ran an extended story by Bob Buckley about Often Awesome. You’ll recognize a lot of the footage, since most of it was donated by Blake and Andy from the Often Awesome: The Series archives! Bob and his team were caring, professional, kind and complimentary throughout this process, so take a look at the segment, posted here:
http://www.myfox8.com/wghp-story-buckley-report-101110,0,3771086.story
…and remember to show your support for those who are helping promote ALS awareness and telling our dearest, darlingest Tim’s story! Follow this link:
http://www.myfox8.com/about/station/wghp-contact-us-programming,0,654711...
…to write to Fox 8 and thank them for their help in the fight against ALS!

We’re trying to get Often Awesome: The Series nominated for a Mashable award, for Most Creative Social Good Campaign. It would be a wonderful way to draw attention to this incredible story and to help Andy and Blake get a teensy fraction of the credit and recognition they deserve for the work they do! The link to vote is here:
http://mashable.com/awards/votes?c=34&v=www.allacesmedia.com%2Foftenawesome
…and you can go back and vote again daily! Try attaching the link to your email signature with a brief explanation, posting it on Facebook, or just going to oftenawesome.org, clicking on the pretty blue Mashable box on the right side of the page, and dragging it into your browser’s bookmark bar! That way, you’ll remember every day!

Most of you have seen the new trailer for Often Awesome: The Series. If you haven’t stop what you’re doing. Right. Effing. Now. And go watch it at http://www.youtube.com/watch?v=4-FpROeybeI

Our mentions online, in the press, on blogs, etc. have been picking up lately, which is an excellent sign for ALS Awareness. If you have any ideas or leads for stories, please feel free to send them to Kate@OftenAwesome.org. I’ll totally help you.
And remember, babies, that you can give and encourage your friends to give, at http://oftenawesome.org/?q=node%2F3 or to Tim’s favorite ALS Charity, ALS TDI at https://www.als.net/GetInvolved/Donate.aspx
No amount is too small to make a difference! Also, if you are a corporation and would like to donate to Often Awesome but need nonprofit status in order to contribute, please donate to Often Awesome The Series at http://www.allacesmedia.com/oftenawesome/2010/08/18/donate/ .

____
As always, we love you guys. Thank you so much for your boundless love and support.

love love love,

Lis, Kate, Michele, and Tim

Episode 24 : A Flock of Tattoos

Episode 24 : “A Flock of Tattoos” — Nate Hall opened up Legacy Irons Tattoos and graciously held a benefit for Tim and the army. Over 50 tattoos in 6 hours.

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.

For more information on Often Awesome The Series Click Here

Calling all Inventors!

hello all. sorry this is going to be such a short update. i have been practicing my eye typing a lot which is swiftly becoming my only form of communication. It's a bit isolating, but not as frustrating as trying to have people try to read my weakening lips. Anyway i promise to update more thoroughly soon but this is more narrow in purpose.
Michele Dupree has graciously donated an adjustable sleep number bed which is on its way to solve my intense discomfort.

However it has no bed rails which is a huge problem now that i tend to shit on a pad on the bed. Yes, you read that correctly. Anyway for that and other reasons i often need to be rolled over in bed. No rails means Tim falls off the bed go bye bye. Since the sleep number bed is not a medical bed, they dont make them. Does anyone know a way we can put a rail on at least the left side of the bed? if not i fear it cant stay. So if anyone has any solutions (remember that this is an adjustable bed) please let me know. love ya.

tim

[ admin edit - If you guys have any suggestions please email us! info@oftenawesome.org ]

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