Blogs

Episode 14: The Honeymoon

Episode 14 : The Honeymoon — Tim and Kaylan head off to Scottland to celebrate their marriage and reunite with some of Tim’s friends from his youth.

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

Episode 13: Shirt Off My Back

Episode 13 : Shirt Off My Back — A community comes together to create an amazing quilt for Tim and Snüzz, who are battling terminal illnesses.

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

Episode 12: The Wedding

Episode 12 : The Wedding — Tim and Kaylan become man and wife in front of their friends and family. Even though the state doesn’t recognize their union the world does.

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

Episode 11 : True Love

Episode 11 : True Love – This is the story of how Tim and Kaylan became a couple and the obstacles they face as Tim battles ALS.

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

HOUSING, BRINGING THE HOUSE DOWN AND DR. HOUSE.

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
- 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
- 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

Episode 10 : Decoration Ghost Part 2

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 10 : Decoration Ghost Part 2. The band, Decoration Ghost records their first album right before Tim looses the use of his hand to play bass. As Tim loses the ability to play bass, the band is faced with the difficult decision to find someone to replace Tim.

For more information on Often Awesome The Series Click Here

DUKE APPOINTMENT

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/

Episode 9: A Work Of Art

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 9 : “A Work of Art.” The Often Awesome Army organizes another benefit show. A silent auction is placed at the Green Bean in downtown Greensboro, to help raise money and create awareness. Local artist as well as people from around the country donate art to help Tim and Kaylan with their battle with ALS.

For more information on Often Awesome The Series Click Here

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

Episode 8: A Final Wish

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 8 : “A Final Wish” The second Often Awesome benefit show at the Blind Tiger in Greensboro, NC featured the final reunion show for Kudzu Wish, a band in which Tim plays bass.

For more information on Often Awesome The Series Click Here

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