Sunday, May 31, 2009

Hot Off The Presses

Today I was awoken at 9am by the familiar sent of fresh newspaper wafting through the air. My Mom greeted me with a smile and an ordinary newspaper, ordinary in every way except for the fact that my face was plastered on the front of it! Nope I wasn't still dreaming while in a peaceful slumber this was real as real as anything can be. The article I've been eagerly awaiting had finally been published!

Special thanks to Chelsea and Brian for doing a phenomenal job on this article and for giving me this wonderful opportunity to show people what life is like with Duchenne muscular dystrophy.

copy and paste this address into your browser to read all about it

Thursday, May 28, 2009

Interview day

Today I had a small audience while going though my daily routine. Who were these people? you ask no I wasn't being stalked by the paparazzi I was being observe by an intrepid reporter named Chelsea and her sidekick an over 6 foot tall photographer named Brian. As I mentioned before I was being interviewed and observed for a newspaper article about me, my mom, and my life with the devastating disease known as Duchenne muscular dystrophy. This in-depth article will cover every aspect of my daily routine and how I deal with this disease on a day-to-day basis it also covers what things are like from my mom's perspective as my almost full-time caregiver.they got to see every aspect of my complicated routine which starts by rolling me being rolled onto my back when I wake up, positioning me to watch TV, administering my morning meds, feeding me two cans of nutrition via G-tube (one can by gravityand one by feeding pump), after that comes a breathing treatment using an IPV machine which gives me percussions and moisture into my lungs to loosen up And mobilize secretions, after that 20 minute treatment it's time for a bed Bath, after the bed Bath it's time for trach and G-tube care where we clean around both of the stoma's or holes, after that it's time to get me dress which takes about 15 minutes, after I get dressed my mom moves my ventilator from my bedside to my wheelchair, now it's time for a transfer which involves using a hoyer lift or Crane to lift and maneuver me to my wheelchair, once I am safe and secure in my wheelchair I simply have too shave, brush my teeth, and call my hair now I'm all set for the day. While the reporter was observing my routine and the photographer was snapping pictures I was asked some questions about life on the ventilator and how having a life-threatening disease has changed my outlook on life. unfortunately the reporter got called to another story and had to leave halfway through my routine. Fortunately the reporter stayed to snap pictures which in my opinion can say more than words ever can. This guy must've snapped over 600 pictures while he was here he even followed me to an appointment with my Department of rehabilitation counselor.for those of you who don't know little barware rehab is the state run organization that is helping me find employment. after the meeting with my counselor the photographer Brian conducted a mini interview with a tape recorder to use with the online article. He let us talk about what we wanted to and didn't ask us any questions. My mom and I decided to talk about how this disease has impacted our lives and how it changed our outlook, life.

I admit it was very weird to have someone watching my every move for a day but it was more than worth since this article will give outsiders an idea of what living with a disability is all about. I would do it again in a heartbeat.

Tuesday, May 26, 2009

Terminator Salvation mini review.

the good: The special FX are of top notch quality, right up there with movies like War of the Worlds and Transformers. You could swear the 50 foot killer robot was really standing in front of you about to squash you with it's giand robo foot. It's that realistic.The action was also top notch, this was the most explosive adreniline pumping lightening fast action I have experienced in years. You literaly feel exausted after the experience that is Terminator Salvation. Don't come to this movie expecting a relaxing time you will be dissapointed. This movie is every action fans dream.

the bad: Yes this movie is great but that doesn't mean it doesn't have it's share of problems. For one the plot is pretty thin, don't expect anything deep or revolutionary here. It's the standard mindless action movie fair with little time spent on character development. This is somewhat excusable as the other movies in the series fleshed out the character of John Connor. This however does not excuse the the lack of devolopment for new characters like Connors pregnant wife who you really learn nothing about. All you know are three facts she's pretty, she's pregnant, and her name is Kate. Besides that the movie really is great. The action and FX more than make up for the weak plot.

I give this movie a 3 1/2 stars out of 5

Monday, May 25, 2009

Happy Memorial Day

Wishing everyone a fun safe memorial day. Please take a moment of silence for all the brave men and women who died fighting for our freedom.

On a lighter note I'm just relaxing today enjoying the gorgeous 80 degree day and I'm going to a movie with my brother later on one of my favorite passtimes. We're seeing Terminator Salvation. I'll post my full impressions and a mini review tomorrow.

Friday, May 22, 2009

Extra! Extra! Read all about it!

Yesterday I recieved some very surprising news. My humble little family and I(my younger bro, mom and I) are going to be featured in the newspaper. You heard correctly folks this quaint little blog and my fundraiser made it to the attention of a reporter of the Sacramento Bee! Chelsea a very accomplished human interest reporter heard about our plight through Amy Bush who put together a fundraiser to either pay down or payoff our mortgage. (You can read more about my fundraiser in an earlier post. This reporter wants to do a human interest story about us and is conducting her first phone interview today with my mother Heidi. Then next Thursday she is going to come to our house and watch my whole routine so she can get a feel for what it's like to both care for an individual with a life-threatening disability and what it's like to be an individual with such a disability aka me. She will also did do it interview with me searching their feel for what my life is like. This groundbreaking development should do wonders for our fundraiser and for my quaint little blog it might not be so little anymore I am going to have a serious following I have a feeling. I am very humble about all this as I don't think my life is all that interesting or really all that difficult. I just live my life giving little thought to my disability it's what I'm used to. I never thought I would be featured in newspaper especially a big one like the Sacramento bee. It should be a very interesting experience to say the least.

Tuesday, May 12, 2009

a 24th birthday to remember

for those of you who are unaware Saturday May 9th was my 24th birthday. It's hard to believe that another year of this life has gone by, I can't believe I'm already 24 it seems like yesterday I turned 21. To celebrate my birthday's it's usually a immediate family affair consisting of a small get together with a cake and something delicious for dinner. We open presents talk and just enjoy each other's company friends are usually left out of the mix. This year I decided to do something a little different this time I wanted to hang with my buddies. I have decided to go to a movie with my friends but besides that I couldn't think of anything else to fill the day. So my mom brainstormed for a few days and finally came up with the perfect idea of going to a comedy club. It's a great place for people my age to meet with a couple of buddies on a Saturday night. The buddies that I invited were Kenny 23, he is a friend of mine that shares my same disease and we go way back all the way back when I was six years old. the other friend I invited was Austin 20, he and I have only been friends for about a year but we already have a great friendship. He's a very kind and compassionate guy it was a lot of fun to be around. We met about a year ago at the disabled teen ministry called walk on water which I mentioned in a previous post. The movie we decided to see was X-Men origins: Wolverine... Wolverine is my favorite X-Men character and I thought the movie looks spectacular thiazide it would be the perfect movie for my birthday the movie turned out to be just as spectacular as I had imagined for the best action movies I've seen in a very long time and all three of us had a blast. The movie started at 3:15 in the afternoon and the comedy show didn't start until 8:30 at night.that left us plenty of time to go back to my house to enjoy a meal of spinach ravioli and a green salad I myself cannot eat such things so I had a strawberry milkshake. after we ate there was enough time to relax and open up presents before it was time to the comedy club. The first the comedy club that night was featuring three comedians one of which was on a sitcom called Gary unmarried and I can't for the life of me remember his name. He actually turned out to be the least funny of the three in my opinion go figure, most of his jokes were dirty and sexual in nature and I'm not the kind of guy who enjoys that brand of humor. The other two were a riot, the first guy made fun of things people encounter in their everyday lives, nothing dirty just good clean humor he didn't even swear! To me the best comedians are the ones who can make people laugh without putting their minds in the gutter. The second guy was slightly less cleanbut still hilarios, the "Loser" as I call him made fun of himself the whole time about how dirt poor he was it was a hoot. This has been one of the best bdays I ever had.