Dinner with the Pros

(1)Me and my sister, Bibbi

(2)Me, Junior Seau and my sister

(3)Me and Drew Brees

(4)Me and Kyle Turley

(5)Me, my sister, David Wells(L), and Billy Ray Smith(R)

(6)Me and Phil Nevin

(7)Me and Joe Horn

(8)Me and John & Holly Carney

Last night I attended a charity event called Dinner with the Pros. It was a fundraiser for TAPS (Teen Adolescent Placement Services), a wonderful organization which helps troubled teens and their families. There were many athletes from Major League Baseball, the NFL, and Golf in attendance. It was arranged by John Carney(NFL)and his wife, Holly with the help of Phil Nevin (MLB) and Tina Mickelson (LPGA). I was a guest of my friends, John and Holly, who have supported TAPS for several years. John Carney, for those who don't know, is a kicker for the Kansas City Chiefs (previously he played for the New Orleans Saints and before that the San Diego Chargers).

The event started off with a local rock band, The Fijis. They are three tenth graders who play blues and rock. For teenagers they were pretty good. Then there was a magic show with the magician Steve Spellman using pro athletes as assistants. He performed at my 39th birthday bash last year. He is humorous and very talented. The show went pretty well, except for Steve falling off the stage. After the entertaining show they showed, a tribute to friends John Carney and Junior Seau. The evening got serious when they talked about the great work of TAPS. Two teenage girls that were helped by TAPS gave their moving testimonials. The evening ended with an auction. All through the evening there was also a silent auction of sports memorabilia. It was nice to be able to mingle and talk with the athletes. I met Junior Seau(NFL; New England Patriots), David Wells(MLB; Pitcher for the LA Dodgers), Drew Brees(NFL; Quarterback for the New Orleans Saints), Phil Nevin(MLB), Kyle Turley(NFL;New Orleans Saints), Joe Horn(NFL;Atlanta Falcons), Billy Ray Smith(ex-NFL, local sportscaster). They were all very nice and all posed for pictures with me. Junior Seau gave me his autograph. I usually don't like to ask for autographs, but he offered it. It was an enjoyable night.

Trach Change

Today I went to UCSD Medical Center to have my trach changed. I usually have my trach changed about every three months by my regular pulmonologist at Sharp Hospital. My trach was last changed at the end of August. In October I had two incidents with scar tissue obstructing my trach (see blog posts of 10/15 and 10/17/2007), which led to two E.R. visits. It was suggested that I see a specialist who deals with the removal of scar tissue. At the end of the month I saw Dr. Harrel at UCSD Medical center (see blog post of 10/30/2007) who decided to order a different trach instead of removing the scar tissue. It was supposed to take about six weeks to get it. Six weeks later, there was no trach. My nurse, Ernie called the hospital to inquire about the trach. They said that they hadn't received the trach yet. But, once they got it they would have to send it out to be sterilized. They didn't expect a long wait. December went by and then towards the end of January, Ernie called again to find out what was going on. He kept leaving messages and getting no response or they said they would check it out and call back. They never did. I felt like I was getting the run around. Frustrated, I contacted a patient advocate at UCSD. She said she would look into the matter. An hour later someone from the pulmonary department called to give me an explanation about what was going on. She explained that the trach had to be sent to the VA Hospital in La Jolla to be sterilized, but they didn't have a contract to do that. Once, they made the proper arrangements with the VA, the trach would be sent there via courier to be sterilized.

They finally received the trach at the end of January. After that long wait, I was eager to get the old trach taken out and the new one put in. The new trach was supposed to be an improvement over the other one. The doctor took out my old trach, put down the bronchoscope to check out my trachea, and everything looked good. Then he inserted the new trach. It didn't fit right. The trach tube was too long. The measurements got screwed up somehow. He then tried another trach. It didn't fit. A third trach was inserted. It was too big. It was uncomfortable and I was unable to talk. I was not happy. They were going to keep it in. The nurse said I might be able to talk in a week. This was unacceptable. I made my displeasure known by shaking my head and mouthing to Ernie that I couldn't talk. When they realized that I was very displeased that I couldn't talk, the doctor decided to put in a fourth trach. This fourth trach was exactly like the original trach that they were going to change. I was relieved that I was able to talk. After all this ordeal, I was very anxious to get out of there. They wanted me to stay a while for observation. After a short time I told them I wanted to leave. When I was told I could leave, I zipped out of there in my chair at full speed. Good thing that nobody got in my way. I will come back in two months for the doctor to check things out and maybe put in a new trach.

Happy Birthday Stephen Hawking

Today is the birthday of physicist Stephen Hawking. He is 66 years old. This is truly remarkable considering that he has ALS (amyotrophic lateral sclerosis), or "Lou Gehrig's Disease." He is probably the longest living person with this debilitating disease. Though it has ravaged his body (he uses a wheelchair--I don't like the phrase confined to a wheelchair--and a computer to talk for him), his brilliant mind has remained intact. He has become a world-renowned physicist (specializing in black holes), the Lucasian Professor of Mathematics at Cambridge University (the chair once held by Sir Isaac Newton), and best-selling author of A Brief History of Time. He is an idol of mine because he is able to transcend his physical body and focus on what he can do with his mind.

The documentary, A Brief History of Time, is about his life and work. It is worth seeing

Darius Goes West

Last night I watched a wonderful documentary on DVD called Darius Goes West. It is the story of Darius Weems, a 15 year old from Athens, Georgia with Duchenne Muscular Dystrophy who had never gone anywhere outside of his own town. In the summer of 2005, he travelled west to California in an accessible RV with a group of dedicated friends with the goal of being on the MTV show, Pimp my Ride to have his power wheelchair customized. He is a young man with a great love of life who doesn't let his disability hold him back. The documentary chronicles his adventures during his trip and how accessible the country is for people using wheelchairs. It is funny, touching, and inspiring. After seeing the movie I felt uplifted. His comments at the end of the movie sum up his great philosophy on life

"This is to all the people in a wheelchair: You don't have to stay at home. You can get out and see the world. Don't let your life pass by you, and just sitting there looking like a bump on the wall! Just do what you can, and always remember, just thank people who are in your life to help you, and don't be mean to people, and just try to do your best, to live your life to the fullest,
if you don't have long to live."

All the procedes from the sale of the DVD go to Charley's Fund a non-profit organization to help fund research to find a cure or treatments for DMD.

The Year in Review

As 2007 comes to a close, it is time to reflect on the past year. The last year was full of ups and downs, happiness, sadness, and loss.

The year got off to a rocky start when in January scar tissue in my trachea created an obstruction to my airway, which caused me to stop breathing a few times which led to three visits to the E.R. and two short hospital stays. After the last ordeal, the doctor removed some of the scar tissue from my trachea. The problem was solved. But, nine months later after no problems with my trach, the obstruction returned and I stopped breathing a few times. This led to two visits to the E.R. in two days. The doctor advanced the trach tube past the scar tissue and the problem was resolved again. At the end of October I saw another doctor who ordered a different trach to hopefully prevent future problems. I hope to get it soon. (see blog posts of 3/14, 10/15, 10/17, 10/30/2007)

In March, I regained my voice. Trying to communicate with out a voice was a very frustrating experience for me and those trying to figure what I wanted. The thought of being mute didn't sit well with me. I was determined to talk again. With persistance and the help of my nurse, Ernie I acheived my goal.

In July, I celebrated my 39th birthday with a western-themed party with friends and family. It was an ideal way to spend my birthday. 39 isn't a particularly special birthday, but it was to me. When I was so sick in 2006, I was uncertain if I would see my next birthday. (see blog post of 7/9/2007)

In August, I attended my 20 year high school reunion. I enjoyed seeing and visiting with classmates I hadn't seen in years. I think many of my classmates were surprised to see me there. It was very nostalgic. (see blog post of 8/13/2007) I took in an abandoned kitten that my sister found. Lucky has turned out to be a joy and a comfort to me. Watching him play is also one of my simple pleasures. (see blog post of 9/1/2007)

In October, I went to the Miramar Airshow at the Marine Corps Air Station Miramar in San Diego. It was a fantastic show, especially when the Air force Thunderbirds performed their death-defying maneuvers. (see blog post of 10/12/2007) At the end of the month, wildfires raged throughout San Diego County, causing over 300,000 people to evacuate their homes and destroying around 1500 homes. My home was in the path of the firestorm and I had to evacuate for three days. It was a nerve-wracking time for everybody. The hard work of the firefighters prevented my home and other homes in my immediate area from burning. (see blog posts of 10/21 and 10/25/2007)

I had a nice, low-keyed Thanksgiving with my parents. I was thankful to still have a home. (see blog post of 11/22/2007) A few days later, I rocked out at the Van Halen concert in San Diego. It was awesome. (see blog post of 11/26/2007)

The year ended with a wonderful and joyful Christmas spent with family. (see blog post of 12/26/2007)

In Memorium


A summary of the year would not be complete without mentioning those who are no longer around. I lost two special people in 2007.



Aunt Kathryn (1923-2007)

In March my beloved aunt and godmother passed on after losing her valiant struggle with cancer. She was an integral part of the family and her death has created a void that cannot be filled. Not a day goes by that I don't miss her. She was a woman with inner strength, compassion, and grace. Whenever we went to her and my Uncle Bill's home, she was always happy to see me. She was a very welcoming person. Everyone was welcome at her house, including ex sons and daughters-in-law, and even strangers. She accepted people for who they were.


Lianne Harding (1963-2007)

In May, a friend of mine from the adult Muscular Dystrophy support group, Lianne Harding died suddenly at home. She was always concerned with others and enjoyed life despite her disability. Though she was frail in body, she was strong in spirit. She was an integral part of the support group and is still missed. (see blog post of 5/21/2007)

Christmas

Another Christmas has come and gone. It is always a bit of a let down when it is over. I wish it could last longer. But, if it lasted too long it would not be as special. I try to keep the spirit of Christmas alive all year. The world is in need of more peace, love, and goodwill.

On Christmas my family attended a church service at the Village (Presbyterian) Church in town. I am not a church going person, but I went because my niece, and nephews were taking part in the children's Christmas pageant. Also, my family was chosen to light the advent candles and sing a song. My mother, sister, brother-in-law, niece, and nephews belong to the church. I am a lapsed member; my father and brother never were. Since my father never attends church, my mom jokes that people think she's not married; they probably didn't know my brother existed until tonight. It was enjoyable to see the kids act out the story of the nativity and sing. They forgot their lines a few times, and the donkeys were wrestling and pulling each other's tails. My niece, Dallas had a solo singing and my nephew, Sterling had a speaking part and a singing solo; my other nephew, Stetson was one of the shepards. I was so proud of them. In the minister's sermon, he said that it would not be Christmas without children. How true that is.

After church we returned home for a small family gathering. My Uncle Richard and Aunt Carol stopped by. My cousin Greg and his wife Teresa and their kids Shannon and Rory came. Last was my cousin Toby, his wife Yada and their five week old daughter Mel (Mel means honey in Portuguese; the mother is from Brazil). We sat around the dining table eating a traditional Swedish Christmas dinner which has always been our custom. My mom likes to keep alive the traditions of her homeland. I miss not being able to eat it. There was a lot of talking, reminiscing, joking, and laughing. The kids were bouncing off the walls with the anticipation of the presents to be opened. The wait must have seemed like an eternity. When they finally got around to opening gifts, it was a chaotic whirl of ripping wrapping paper and bouncing kids. It is so nice to see the joy in the faces of the children.

Christmas Day my sister, her husband and their kids came back to open more gifts and spend the rest of the day with us. It was another nice Christmas.

Christmastime

Merry Christmas! I can't believe Christmas is only four days away. Where has the time gone? Christmas seems to arrive quicker the older I get. It comes and goes too fast. I wish it could last a little bit longer.

This is my favorite time of year. I just love the Christmas spirit of peace, goodwill, and giving. It would be great if this spirit lasted all year round. I also like that it is a great excuse to gather together family and to see friends.

Other things I like about Christmas:

• The music. It really gets me in the Christmas spirit. Songs such as Rudolph the Red-nosed Reindeer, Frosty the Snowman, The Christmas Song, I'll Be Home for Christmas, White Christmas, Silent Night, Jingle Bells, Happy Xmas (War is Over), Feliz Navidad, The Most Wonderful Time of the Year, A Holly Jolly Christmas, Jingle Bell Rock, Santa Claus is Coming to Town, Winter Wonderland, and Silver Bells. But, I could go on and on.


• The decorations. There is something joyful about seeing houses, trees, yards and buildings festooned with colored lights and decorations. It brings out my inner child and brings a smile to my face. Seeing the Christmas tree adorned with lights and decorations and colored packages arrayed around it gives me a warm feeling inside.


• The Christmas shows. Rudolph the Red-nosed Reindeer, Frosty the Snowman, Santa Claus is Coming to Town, A Charlie Brown Christmas, A Christmas Story, A Christmas Carol, and the music programs on PBS and other stations. It would not be Christmas without them.


• Seeing the excitement and joy in my niece and nephews at Christmastime. It brings back memories of Christmastime as a wide-eyed and excited child waiting for Christmas Eve and Christmas Day to come. The arrival of Santa Claus bearing gifts on Christmas Eve was the height of excitement for me.

Above are pictures of Lucky enjoying the season. He's had fun climbing the Christmas tree, swatting ornaments around, or running away with them in his mouth. He must think we filled the house with decorations just for him to play with.

Toys for Tots

Today I donated gifts to Toys for Tots; one of my favorite charities. It is such a great cause. But, I was saddened to hear that donations were down this season. The uncertain state of the economy is making people less eager to give. But, at least there are still toys to give away to poor children. Just not as many as they would like. I like the thought that the toys I donate go to children that may not have gifts to open on Christmas. It is always a nice feeling to give, especially to those who are less fortunate. As I have grown older I have realized that it is better to give than receive. That is the spirit of Christmas. If you are looking for a good cause to donate to, Toys for Tots is the one.

Rudolph the Red-nosed Reindeer

Last night I went with my father and nurse, Ernie to visit my sister, niece, and nephews at their home. My brother-in-law was out for the evening, and my mother was at rehearsal for the choral group she belongs to. It gave me more one on one time with my sister. We all gathered around the television to watch the beloved Christmas (Am I still allowed to use that word? I hope the politically correct crowd doesn't get after me) classic Rudolph the Red-nosed Reindeer. It is still my favorite Christmas show. It always brings up fond memories of my childhood when my parents would gather my brother, sister, and I in our pajamas in the den to watch the Christmas shows on television. It makes me smile to think of it. I like that my sister is carrying on the tradition with her children.

The reason I have always liked Rudolph the Red-nosed Reindeer is because I could relate to him. It is about being different and not fitting in; a theme I am well aquainted with as a disabled person. I remember as a child being excluded because I was not like everybody else and being made fun of. The nice part is that in the end Rudolph is accepted by the community despite the fact that he is different. It is a good lesson for life.

Van Halen

Last night I saw Van Halen in concert at Cox Arena on the campus of San Diego State University. When I heard that Van Halen was touring with original front man David Lee Roth, I had to get tickets. The last time I saw Van Halen was in 1986 at the San Diego Sports Arena. At the time Sammy Hagar was the new lead singer. It was a great show and Sammy was a worthy sucessor. But, I always wished I could have seen them in their original encarnation. When this chance arose I couldn't pass it up.

It was my first time attending a concert at Cox Arena and it won't be my last. The parking was very convenient and the disabled seating was very good; my nurse, Ernie had an attendant seat right next to me. All the disabled seating is at the top all the way around the oval arena. But, it is not nosebleed at all. Since the arena is fairly small, the disabled seating provided a great view of the stage. The seats in front of me were set farther down so that if people stood up my view was not obstructed; a large video screen at the back of the stage provided great closeups of the action.

As I sat in my spot waiting for the show to start and watching all the people file in I noted such a variation of ages. It went from teenagers all the way up to the 50 something crowd. The concert started with a reggae band; the name escapes me. That was an odd opening act for a hard rock band. But, they were pretty good. I especially liked their covers of Bob Marley's songs No Woman No Cry and I Shot the Sheriff . I like reggae, it is generally upbeat. They performed for about a half hour. For the next half hour we waited as they prepared the stage for the main act. By this point the anticipation in me was growing stronger by the minute and I could sense it in the crowd as well.

After what seemed an eternity, the lights in the arena went out and as the opening chords of You Really Got Me blasted from the speakers and the stage lights lit up the crowd roared. After that is was one great song after another. They performed songs such as Jamies Crying, (Oh)Pretty Woman, Beautiful Girls, Somebody Get Me a Doctor, And the Cradle Will Rock, Running with the Devil, Hot for Teacher, Panama, Ice Cream Man, Aint Talkin' 'Bout Love, Unchained. They ended with the song, Jump. I hoped they would have done some encores. There was also a great drum solo by Alex Van Halen and Eddie Van Halen had an amazing guitar solo. He is still one of the great guitarists. After all these years they can still rock. It was interesting to see Eddie's 16 year old son, Wolfgang playing bass; he replaces original bassist Michael Anthony. Michael Anthony was a great bassist and when I heard he was no longer with the band and that Eddie's teenage son was the new bassist, I was a little dissappointed. But, my dissappointment soon melted away when I heard him play. That boy can rock. It was great to see father and son performing together. David Lee Roth was still just as good, although he forget the words twice. But, it didn't detract from the show. He is still quite the showman after all these years with his glittering jackets and different colored top hats. He pranced and leaped around the stage and seemed to enjoy the limelight. Although his leaps were not as high as in his younger years, he still did a good job. Overall, it was a great concert and well worth the expense.