It's Christmastime

Christmastime is upon us again. Where did the time go? This is one of my favorite times of the year. I like the spirit of giving, peace, and goodwill that is a hallmark of this season. As a child, Christmas was the highlight of the year, and I was always excited at what gifts I would get. But, as I got older, I realized that the giving of gifts was far more rewarding. Opening gifts is a short term pleasure: once they are opened, the excitement wears off. But, the pleasure of giving lasts much longer. I get much pleasure seeing the joy in the eyes of my niece and nephews when they open the gifts from me. This year again I donated toys to Toys for Tots, a wonderful charity. It gives me pleasure knowing that children, who may have gone without toys on Christmas, will get toys because of my donations. Besides the giving, this is also a time to get together with family and friends; it would not be the same without them. My thoughts go out to those who are alone this time of year and wish they can find some joy. Merry Christmas to all.

Thanksgiving

On this day of Thanksgiving I am thankful for many things in my life. The following is a list of what I am thankful for.

1. Family
2. Friends
3. Good health
4. Being alive
5. Living at home and not in an institution
6. My caregivers (especially Ernie, who has worked for me 14 years)
7. My van
8. My cat, Lucky

He Did It!

On October 25, Matt Eddy, the first man to drive his power wheelchair(ventilator included) across the United States completed his trip at the Aquarium of the Pacific in Long Beach, California. On June 30, the thirty-one year old man with Duchenne Muscular Dystrophy started his trip from the Long Wharf Aquarium in Boston, Massachusetts and wheeled 2335 miles to Long Beach, planning his route as he went along. His trip aimed to increase awareness about disability and publicize his charity, Matt's Place, to help build accessible housing for people with disabilities. I hope he succeeded in that. He also showed that a person can do almost anything if he sets his mind to. Matt had this idea and made it reality. His determination allowed him to accomplish this feat. Great job Matt!

Check out his blog, Ramblings in the Dark. There is also a great article about Matt and his trip in the Press-Telegram of Long Beach.

Michael Martin 1930-2008

On October 1st, our dear family friend, Michael Martin, passed away peacefully in his sleep. Just the way he wanted to go. Two days before, he and his wife, Sylvia were down visiting us. I am so glad I was able to see him this final time.

My parents befriended Michael and Sylvia forty-five years ago, and they have stayed close ever since. Their daughters Blaire and Stacy grew up with my sister, brother and I. We shared many important events in our lives, such as the Bat Mitzvas for Blaire and Stacy, weddings, birthdays, graduations. They were like family.

Michael was an example of someone who had realized the American dream. He came to The United States from London, England with little money. He married, had two daughters and established a successful private investigation firm in Los Angeles. It was a privilege to have known him. He had a quick and clever wit, always had interesting stories about his life and his many travels all over the world, and was a caring and warm person. He was also good-natured and lived life to the fullest. I can still hear his laugh. It was always a pleasure to visit with him. Whenever he visited he was always glad to see us as were we. I will miss those visits.

On October 5th I went up to Los Angeles with my family to bid farewell to Michael. The funeral service, though tinged with sadness, was a celebration of his life. The service started with an acquaintance of his singing the Louis Armstrong song, What a Wonderful World. There were touching and even amusing eulogies by Sylvia, daughters Blaire and Stacy, and some of his friends, such as my dad. During the eulogies there were plenty of tears, as well as plenty of laughs and smiles. The singer also sang a song based on a poem Michael wrote about his concern for the environment, called Does Anyone Care? It was a nice touch to bring his words alive in song. At the gravesite, after the internment everyone released a balloon at the same time. The balloons rose into the sunny sky in a unified mass and were carried away by a gentle breeze. It was a fitting farewell.

My thoughts go out to Sylvia, Blaire and Stacy as they adjust to a life without Michael. He may be gone, but his memory lives on in all of us who knew him.

Miramar Air Show

On Friday, October 3, I attended the annual air show at MCAS (Marine Corps Air Station) Miramar in San Diego. It was an awesome show, especially for an aircraft fan like me. When I got there they had an air/ground assault demonstration with helicopters, jets and marines. The highlight was a massive explosion which created a wall of flame. The heat was so intense I was able to feel it from where I was sitting. They had a performance from the Oracle Challenger, acrobatic biplane. The pilot, Sean Tucker, performed some amazing stunts. They also had flight demonstrations of the F/A-18 Super Hornet, the F/16 Falcon, the new F-22 Raptor. They had a legacy flight with a WWII fighter plane flanked by the F/A-18 and F-22. That is always an interesting sight. They also had a demonstration of the Marine Corps' AV-8B Harrier VTOL (Vertical take-off and landing) jet. Before I arrived they had more demonstrations of aircraft, but I was there for the most exciting parts. They also had all kinds of aircraft, both civilian and military, on display on the tarmac. This year, they had the new Osprey tilt-rotor aircraft. It is supposed to be a replacement for the aging transport helicopters used by the Marine Corps.

But, the real stars of the show were the Blue Angels. They made their return to Miramar after a one year absence. I last saw them in 1986, before they switched over to the F/A-18 from the A-4F Skyhawk. Our neighbor at the time was a retired admiral and he got me some VIP passes to the airshow. I was given the red carpet treatment. I sat in the VIP section. Among the guests were some high-ranking military officials. We were right on the edge of the runway so had front row seats to all the action. After the Blue Angels performed I was able to get up close to the aircraft and meet the pilots. It was a great experience. But, I didn't see the Blue Angels again until this year. Last year was my first time back to the air show since 1986, but instead of the Blue Angels they had the Air force Thunderbirds. The Blue Angels have always been a staple of the airshow but last year they had a scheduling conflict. So, I was excited to see them again this year.

The excitement grew as The Blue Angels started their engines and taxied down the runway, and then with engines roaring, they took to the sky in a precise diamond formation. Once in the air, they performed one amazing maneuver after another. They did loops, rolls, inverted flights and all kinds of different formations. The most hair raising maneuver was the knife-edge flight where two Blue Angels fly towards each other and then fly past each other with only a few feet to spare. One plane is actually slightly higher than the other to give the appearance that they are going head to head. They also did a fly-by in a tight formation with wings overlapping. The wings are only eighteen inches apart! One false move would be devastating. It takes the breath away to watch. It was a fantastic show. I can't wait to see them again next year.

A Close Call

I had a close call on Thursday, September 18. It was an upsetting experience and I was unsure whether to write about it or not. That is why it has taken me so long to post it. I decided to write it as a reminder to my fellow ventilator users how tenuous our lives can be.

That night when my dad transferred me from my wheelchair to my bed for the night--a routine occurrence-I ran into a problem. When my dad connected me to my bedside ventilator I couldn't breathe. A tube on my ventilator circuit was disconnected, and for some reason my dad panicked and couldn't reconnect it, or forgot where it went. The frustrating part was that I knew what the problem was and the solution, but I couldn't talk. It would have taken a second to reconnect the tube, and I would have been breathing. So, he turned me around with my head at the foot of my bed so I would be closer to the ventilator on my wheelchair, but it was too far away and the tube wouldn't reach. He didn't think of free wheeling my chair closer, or taking the ventilator off the chair and bringing it closer. When he was moving my head to the foot of the bed, he forgot to disconnect my bedside ventilator's tubing from my trach. The tubing pulled tight and the trach was yanked out. I found out later that my trach was pulled out all the way out and was resting on my shirt! I thought it was just partially pulled out. It was worse than I thought. With the trach out, there was no way to connect the vent tubing to my trach. My dad called my mom and she came in, grabbed the ambu bag, but she had no way to connect it to the trach. Instead she covered the stoma and put the air piece in my mouth and started to pump air into my lungs. At the same time she managed to call 911. I heard the sirens within a minute coming down my street. Then I must have blacked out, because next I saw the paramedics leaning over me, then I blacked out again and came to in the E.R. I have no memory of being put on the gurney or the trip in the ambulance. When the paramedics arrived I was turning blue. They added a face mask to the ambu bag and continued to bag me. I didn't get sufficient air the way my mom was doing it. My mom was pumping the air through my mouth, but air was leaking through my nose. She should have connected the face mask to the ambu bag. It is great that I have two fire stations within a mile or so of me, so they were there within minutes. Any longer, and I probably wouldn't have made it.

At the E.R. they continued to bag me, while they tried to find out what trach I needed. In the meantime, my dad put my wheelchair with my vent in the van and delivered it to the hospital. They managed to get me to talk long enough that I could tell them, my extra trach was in my bag on my wheelchair. When my nurse and friend, Ernie, arrived, he connected me to my ventilator. The E.R. nurses' arms must have been very tired. Then he showed the E.R. doctor how to put in the trach. I guess the doctor had never done it before. Once I was with a new trach and connected to my ventilator, and was breathing fine they allowed me to go home. I drove my wheelchair out of the hospital and rode home in my van. It felt great to be back in my own home and alive.

This is yet another reminder of how fragile life is, especially for ventilator users. It is also a reminder to my caregivers not to panic when something goes wrong, for this prevents clear thinking. The solution was as simple as plugging the tube back in. But, panic caused my dad not to see the solution. Panic can happen to anyone. Once it starts it is hard to stop it. The frustrating part was that I could see the problem and solution, but was unable to talk to tell my dad. Everything seemed to be moving in slow motion. I felt like this was the end. I couldn't do a thing about it and was becoming resigned to this outcome. I was also angry that my life would end in such a stupid manner. It brought to mind my good friend Joe Malone, who died in a similar way. It was a sense of relief when I woke up in the E.R. I had used up another of my nine lives. At first I was upset with my dad, and when I could speak, I said,"what an idiot!". But, once I got that out of my system, I couldn't stay angry. What would have been the point of being angry? It was an accident. I had made it, so that was what was most important. It was a learning experience for everyone involved. I doubt it will happen again.

Matt Eddy

I recently came across the story of Matt Eddy, a 30 year old man with Duchenne Muscular Dytrophy from Lynn, Massachusetts. He is rolling across America from Boston to Long Beach, California in his power wheelchair (ventilator included) to raise public awarness about disability and to support his charity, Matt's Place, which aims to build accesible housing for people with disabiities, so they can live in their communities and not in institutions. Check out his blog, Ramblings in the Dark, to follow his progress across the nation. As I write this, he is about eighty days or so into his journey and somewhere in New Mexico. I am impressed by his determination and guts. Go Matt!

9/11 remembrance

It's been seven years since the sad events of September 11, 2001. The horrible pictures of that day are still fresh in my mind. I still have a heavy heart when I see the planes crashing into the twin towers, the unbelieveable sight of the towers collapsing, and the explosion as the plane hit the Pentagon. The bravery and sacrifice of the passengers of Flight 93, who brought the plane down in the Pennsylvania field, averting an attack on our nation's capital are not forgotten. Today is a day to put aside our differences and come together in remembrance of the lives lost on that tragic day.

Darius Goes West

Last January I wrote about a wonderful documentary film called, Darius Goes West. It is the story of a young man with Duchenne Muscular Dystrophy named Darius, who travelled across the country to Los Angeles with friends to be on the MTV show Pimp My Ride to get his power wheelchair customized. I was asked by Darius and his crew to publicize a new fundraising effort they just recently launched. They hope to sell a million DVDS of the documentary in a year to raise money for research to find a cure for Duchenne Muscular Dystrophy. The DVDs sell for $20; $17 goes directly to research and $3 goes to making more DVDs. If you want more information and want to purchase DVDs of this uplifting documentary, go to Darius Goes West.Org.

The Dark Knight

Monday I went to see the latest Batman movie, The Dark Knight. This version of Batman was a dark, disturbing and more violent telling of the story, which transcended its comic book roots. Christian Bale was well cast as Bruce Wayne/Batman. He has the right look to play the character and in this movie has a more serious demeanor. The Joker, played by the late Heath Ledger stole the show. He played the psychopathic, sadistic, and sinister Joker with a manic intensity, which made him a truly menacing figure. It was a powerful performance. Jack Nicholson's Joker in Batman, though putting on a fine performance was comically evil, and not as complex a character. It was an action-packed, special effects-laden film, but the real srength of the film was its deep, psychological dimension which drew me into the story.

Cody Namesnik 1978-2008

On Saturday, July 19th, an aquaintance of mine with Duchenne Muscular Dystrophy passed away after losing his battle with pneumonia. Cody belonged to the internet group, DMD Pioneers, which I too belong to. I chatted with him from time to time on Yahoo! Instant Messenger. He was always kind and good-natured and had a sense of humor. He also had a love of animals. I may not have known him as well as others, but I am deeply saddened by his loss. Anytime I hear of the loss of a fellow DMDer, it hits me personally. They are all brothers in the common struggle against this disease. It was nice knowing you, brother!

Chris Isaak

On the night of Tuesday, July 15, I saw one of my favorite musicians, Chris Isaak, in concert under the stars at the Valley View Casino in Valley Center. The stage was set up in a fenced off parking lot. My seats were in the front row, stage left, probably about twelve feet from the stage, with a mostly unobstructed view of the stage. A post on the side slightly obstructed the keyboard player, but most of the performance was in plain view. It was a much more intimate setting than most of the concerts I have been to. It was so nice to be so close to the action on stage and in the audience.


Chris Isaak and his band entered the stage and started off with the lively, Lonely With a Broken Heart, and the mellow Somebody's Crying. Then he walked down off the stage and strolled through the audience while singing Elvis Presely's song, Love Me Tender. He drove the women in the audience wild. In fact, during most of the show, a whole group of women were gathered at the front of the stage. Women were screaming, cheering, and calling out throughout the show. I should know, I had one of them right behind me. After that number, he performed, I Want Your Love; a new song, We Let Her Down, off his upcoming album; Speak of the Devil, replete with smoke on the stage and red lights. Then he did another new song, Mr. Lonely Man, then one of my favorite songs, Wicked Game. After that was, The Best I Ever Had, Worked It Out Wrong, two new songs, Blues Stay Away from Me, and All the Way; Two Hearts; another new one, Take My Heart; a cover of the country song by Ned Miller, Dark Moon; I'll Go Crazy; Don't Leave Me On My Own; Roy Orbison's, Only the Lonely; and Baby Did a Bad, Bad Thing. He also did a cover of Cheap Trick's I Want'You To Want Me.


I thought that was the end of show, but he and his band came back on stage. They started by playing the instrumental surf rock number, Super Magic 2000, and Chris Isaak came on stage in a mirrored suit and played the country sounding American Boy, then San Francisco Days, Notice the Ring (with a great conga solo by Raphael P.), and ended with Forever Blue.

Chris Isaak's variety of rock, rockabilly, country, blues and ballads makes for a good concert. His singing and guitar playing is backed up by his great band: Roly Salley, on bass; Scott Plunkett, on Piano; Hershel Yatovitz, on guitar; and Kenney Dale Johnson on drums. They are very comfortable performing together which was shown in their ribbing each other and joking around during the show. Chris also interacted well with the audience, which added to the intimate setting. There was also a great energy with the audience as they danced and swayed to the music. It was an enjoyable night and a concert I won't forget.

My 40th Birthday Party

Last Saturday (July 12), my long-anticipated fortieth birthday party took place at my sister, Bibbi, and brother-in-law, Rick's home. I had a small family get-together on my actual birthday last Wednesday, July 9, but this was the big celebration. The theme of this year's party was Spanish flamenco. I thought it would add a festive air to this milestone celebration. The tables were decorated with black bolero hats, Spanish flags, and castanets. A bar was set up to serve sangria, and other drinks. There was a table with Spanish food, such as gazpacho. In the background, flamenco music played from a cd as guests arrived and mingled. The weather was perfect, with a nice breeze keeping it pleasant. It was so nice to see so many friends and family members in attendance. Celebrating my birthday with family and friends is the best gift that I could have. There must have been close to eighty people there; all talking, laughing, and having a great time. The children were all running around the yard and enjoying themselves as well. There was a positive vibe in the air.

Among the many guests were two of my teachers. One was my teacher from third and sixth grades at Rancho Santa Fe School, Mrs. Jaffari, and my biology teacher from Torrey Pines High School, Mrs. Yayanos (after all these years, I still find it hard to call my teachers by their first names). I was surprised to see family friends Bob and Charlene,who drove down from Sacramento. They owned the condo next to us in San Carlos, Mexico where we used to go every February from 1980 to 1987. They were always such fun-loving people. Three of my best friends were there: Alex, who I have known since third grade, came down from Los Angeles; Marisa, who I met eighteen years ago, while we were students at The University of San Diego, drove down from Long Beach; and Peter, who I have known since seventh grade, came down from Palo Alto. Also, a few of my friends from my adult Muscular Dystrophy support group were there: Phyllis and her daughter Kimberly; and Dean. Also the patient services coordinator of The Muscular Dystrophy Association (MDA), Danielle was there.

After everybody had a chance to mingle and were in a festive mood, they gathered around the dance floor for the flamenco show. The troupe of performers consisted of a guitarist, a female singer, and two dancers: a man and a woman. They put on an authentic flamenco show with traditional songs and dance that was full of passion, energy, and emotion.The performers were not just going through the motions; they gave it their all and truly enjoyed what they were doing. It showed on their faces. The rapid, and powerful strumming of the acoustic guitar was accented by the strong, passion-filled voice of the singer. The dancers showed the same amount of passion in their dancing. Their performance was full of the emotional sweeping of the arms, the rhythmic stomping of feet, clicking castanets, and fine hand and foot movements. Towards the end of the show the dancers brought audience members on the dance floor to dance with them. The first picked was my friend Marisa, then my sister, my father, then my friend Lance's girlfriend, Marisol. They all had a good time on the floor and everyone enjoyed watching as well. To end the show, the performers all sang Happy Birthday to me in Spanish (Feliz Cumpleanos).

After the show, my niece, Dallas got on stage and sang a song for me. That was very touching. I was also presented with a replica of a brick that will be placed at the entrance at Disneyland with my name and birthdate on it. I'd better make sure nobody walks, spits, or drops chewing gum on it. Some of the children started an impromptu hula hoop contest. A pinata in the form of a bull (not really a Spanish tradition, but a fun thing for the kids) was hung from the tree branch for the children to attack. They made quick work of it with their bats by decapitating it and spilling the candy. After a Spanish feast, people were invited to talk about me. My sister told the story of the time I was in Amsterdam with her and my brother, Bill and I was exposed to second hand smoke (not from cigarettes). My memory is kind of hazy about that night. My dad reminded me that I was almost half his age. Listening to these speeches and visiting with the guests made me realize what a supportive group of friends and family I have. I finally got my courage up, and gave my speech. After my speech, everyone gathered around me and sang Happy Birthday and after that released monarch butterflies around me. It was a beautiful sight with all the bright orange butterflies fluttering in the air. A couple of them landed on me. That was a beautiful end to a wonderful party. It was my best birthday party by far.

The Big 4-0

Today I reached a big milestone in my life: I turned forty years old (or young, depending on how you look at it). To me this is a victory of sorts. When I was diagnosed with Duchenne Muscular Dystrophy at the age of five, the doctors told my parents that I would probably not make it past the age of fifteen. I proved all the doctors wrong. Despite my disease, I am still going strong. I'd like to think that some of it has to do with my attitude. But, a major factor in my longevity and well-being is the fact that modern technology has made it possible to extend the quantity of my life as well as improving the quality of my life. My ventilator, suction machine, and feeding tube, make my life possible. For that, I am thankful. It was my luck to be born in a country where access to such life-saving technology is possible.

Reflecting on the past forty years, I have regrets (who doesn't?), but I try not to dwell on them for long. I would drive myself crazy if I played the what if ? game too much. What is past, is past, so I just try to move on. My life has been a rollercoaster ride of ups and downs, sadness, elation, good times and bad. But, overall, the good times have predominated. My disability hasn't held me back from enjoying life. If I, or my family had allowed my disability to be an obstacle, I wouldn't have seen so much of the world, graduated from college, or gone on to receive a Master's degree in history. I have lived with hope for a cure for Duchenne Muscular Dystrophy, but have come to accept the fact that there may not be one in my lifetime. If a cure does occur I would be the first in line, but if not, I can accept the fact. I have lived with my disability for so long that I have come to accept this state of affairs; I have become comfortable in my own skin. Over the past forty years, many people have come in and out of my life; family members, friends, acquaintances. Most of these relationships have enriched my life in one way or another. My family and friends have been instrumental as well in helping me get through times of trouble and helped to give me the will to go on, when things appeared hopeless. They give me a lot to live for.

In my forty years, I have come to the realization that it is important to try to take one day at a time, not to dwell too much on the past, and not to focus too much on the future. Life is to be enjoyed. Stop and smell the roses. Appreciate the simple things in life, for they can be the most enjoyable. I close with the quote that I have adopted to define my life--"There is no cure for birth and death save to enjoy the interval." (George Santayana (1863-1952)).

4th of July

Today I attended the annual 4th of July parade in my town of Rancho Santa Fe. It is always a nice way to celebrate the holiday. It seemed like the whole community turned out to enjoy the festivities. People lined the sidewalks on boh sides of the street to watch the procession go by. It began with the singing of the national anthem and then the procession began with the fire engines, the Marine Corps color guard, and then the parade of classic cars, tractors, horses, golf carts, and the traditional procession of children on bicycles. After the parade, the people gathered on the village green for food and to listen to the music from a local orchestra. It may not be a grand festival, but it is a down-to-earth, small town happening. This year my niece, Dallas, and my nephews, Sterling and Stetson took part in the parade. Sterling was picked to ride up front in the lead fire engine, while Dallas and Stetson were on the Community Center float with other children. Now that my sister, her husband and kids will be living in the community it was nice to see the kids being a part of this tradition.

On this day my thoughts go out to our men and women in uniform who are serving over in Iraq and Afghanistan and those who have lost their lives over there. I just wonder how many more Independence Days will find our troops over there, and how many more of their lives will be lost.

14 Year Anniversary

This month marks 14 years since I was trached and vented. But, more importantly, it was when I was given a new lease on life. I was given the choice between life and death. If I got a trach, I would live, if not, I would have been taken off life-support and been gone. Without hesitation, I chose life. A wise choice. I knew I had big challenges ahead of me, but I still had more living to do and so much to live for.

Lucky

Lucky lounging around.

Medi-Cal Under Assault

Today I went with my nurse, Ernie to a protest rally at Lindbergh Park in San Diego to oppose Governor Schwarzenegger and the California State legislature's approval of a 10% cut in Medi-Cal (California's version of Medicaid) reimbursements to health care providers. These cuts are supposed to take effect on July 1. It is hoped that protest and petitions will stop these disastrous cuts. I was disappointed that the turn out was not larger for such an urgent issue. There were less than fifty people there. Most were home health care nurses, patients, and family members who will all be affected by these cuts. Some people gave impassioned speeches against the cuts. Two local news stations, KUSI and the Fox affiliate XETV showed up to cover the protest. At least it got some coverage. I just hope it's not too little, too late.


Home health care nurses who are paid by Medi-Cal will get a 10% pay cut (the agencies that hire the nurses are putting all the burden of the cuts on the nurses), and durable medical equipment and medical supply companies will get a 10% cut in reimbursements as well. It is hard to get nurses already; these cuts will make it even harder. Some people will lose their nurses to higher paying jobs. Also, some medical supply companies may no longer serve Medi-Cal recipients if these cuts take effect, and it may be harder to get some supplies and equipment.



I understand that California has serious budget problems and needs to make cuts, but these cuts to Medi-Cal are damaging. It is funny that everyone must sacrifice, except the Governor and the politicians. In fact, the state legislators were given pay raises. Why do they need raises in these tough economic times? I don't think they deserve it anyway. How about the state legislators take a 10% pay cut? or how about cutting their perks? They didn't exhaust all options in making the cuts. There must be pork barrel projects, or wasteful spending to be cut. Even going after Medi-Cal fraud would save money. I am furious at Governor Schwarzenegger and the state legislature. Medi-Cal always gets targeted for cuts which end up hurting people. I hope he and the legislature see the light and will reverse these cuts. My fingers are crossed.

The Police

Last night I went to see The Police at the Cricket Wireless Amphitheater (formally Coors Ampitheater) in Chula Vista. The handicapped parking is conveniently located near the front entrance so I didn't have far to go; my seats in the wheelchair section were very good as well: I had an unobstructed view of the stage. I always enjoy concerts under the stars, or in the case of last night, under the clouds. Unfortunately, it was unusually cold for this time of year.

The concert opened with Elvis Costello and the Imposters. He put on a good performance and performed many of his classics, such as Watching the Detectives, Every Day I Write the Book, (What's So Funny 'Bout) Peace, Love and Understanding. He also played some new songs that I was unfamiliar with. It brought back memories of the 1980's. The highlight of his performance was when Sting came out on stage with Elvis Costello to perform Allison. It was an unexpected bonus.

They started off the show with Bring on the Night, then went right into Message in a Bottle, Walking on the Moon, Demolition Man, Voices Inside My Head, When the World is Running Down, Don't Stand So Close to Me, Driven to Tears, Hole in My Life, Every Little Thing She Does is Magic, Wrapped Around Your Finger, De Do Do Do, De Da Da Da, Invisible Sun, Can't Stand Losing You, Roxanne, King Of Pain, So Lonely, Every Breath You Take, and ended with Next To You.

It has been about 25 years since they last toured and they are older--Sting is 56, Stewart Copeland is 55, and Andy Summers is 65. But, they could still deliver. The energetic drumming of Copeland, lively guitar playing of Summers, and rhythmic bass playing of Sting brought the old songs back to life. The songs sounded just as good. The audience got into the show with cheering, singing along to the songs, and swaying and dancing in place to the music. It was a nostalgic experience. They played most of the songs one would expect them to play. The 100 minute show zipped by. When they gave their final bows and the stage lights went out, I couldn't believe it had ended. I wish they could have played a little longer; there were still songs that I hoped they would play, such as, Synchronicity I, Synchronicity II, Spirits in the Material World, and Murder by Number. But, I can't complain. They put on a good show. I was glad I got to see this reunion. It may not happen again.

Indiana Jones and the Kingdom of the Crystal Skull

Today I went to see the movie, Indiana Jones and the Kingdom of the Crystal Skull. I was excited to see the return of Indiana Jones after all these years (I was dissappointed that they didn't continue the series after the third movie, The Last Crusade) , but I was unsure what to expect. It's been a long time since Indiana Jones last appeared on the screen and Harrison Ford is older now. The movie turned out to be a pretty good return to the screen. It had what one would expect from an Indiana Jones movie: edge-of-the-seat action, daring escapes, thrilling chases, improbable stunts, mysteries to be solved and discovered. Harrison Ford, though older, still delivered as the brave, wise-cracking, intelligent, bull whip cracking hero. Of course, there were some moments that were too campy and corny which the movie could have done without. The story was not as good as Raider's of the Lost Ark, and The Last Crusade, but it was not another Temple of Doom --the weaker of the three original movies. It was still entertaining, especially if you suspend disbelief and just enjoy the story. I was not greatly dissappointed, but I did expect a lot more from the movie.

The Chronicles of Narnia:Prince Caspian

Yesterday afternoon I went to see the movie, Prince Caspian, the second movie in The Chronicles of Narnia series. It was not as good as the first movie: The Lion, the Witch, and the Wardrobe, but was still worth seeing. The film was full of stunning scenery, battle scenes, talking animals, and mythical creatures. All the elements one would expect in a fantasy movie. It was a little darker and more militaristic than the first one. There was violence, but it wasn't gory at all. The story line was coherent and the special effects helped to bring the land of Narnia alive. The movie kept my interest most of the time and the over two hour movie went by quickly. It was nostalgic for me since I read the whole series of books as a 10 year old. I was not dissappointed.

San Diego Zoo

Today was a beautiful, spring day so I decided to go to the San Diego Zoo. I always enjoy driving around the zoo in my chair looking at the animals. I especially like watching the monkeys and apes. The orangutans were very entertaining today. They like to sit at the plexiglass and watch the people on the other side. A young orangutan rolled on the ground alongside the plexiglass almost the entire length of the enclosure. He was putting on a show. An older orangutan lay in the corner covered with a burlap bag like he didn't want to be bothered. As I was leaving the area, I came across a curious sight: a zookeeper walking a meerkat on a leash (I wish I got a picture, but I left my camera at home). Next I wandered through the Monkey Trails exhibit which shows the flora and fauna of the rainforests of Africa and Asia. I especially like the colorful birds and their songs. The monkeys are also interesting to watch. After that, I went to see the giant pandas. It was nice to see the newest panda. He was lounging on a tree branch. The line to see the pandas was not too long. On the way out I passed the different bears (most were sleeping or lounging about) and then saw the meerkats enclosure. One sat in a bush looking at everyone with his beady little eyes. It was as if he was posing for the cameras. I also saw the elephants in their not so spacious enclosure. It is kind of sad to see these large, majestic animals penned up. Next I went to see the koala bears. As usual they were sleeping in their trees. Only one was voraciously eating his eucalyptus leaves. It was a nice afternoon and enjoyable as usual.

Iron Man

Today I went to see the movie, Iron Man. I admit it: I'm a sucker for superhero films (it must be my inner child). It did not disappoint. The movie was action-packed and full of explosions and great special effects. But, special effects aside, the story had some substance to it. The main character, Tony Stark, played by Robert Downey, Jr., is the billionaire head of a weapons manufacturing company who has a change of heart about the nature of his business and its complicity in worldwide violence. He decides to fight this violence with his alter-ego, Iron Man. Unlike most superheros, he didn't have any super powers; his powers came from technology. Also, Tony Stark was an imperfect person; he was shallow and arrogant, but his conscience moved him to do good. I find it more interesting when superheroes are not one-dimensional and have flaws like most humans. It makes them seem more real. Robert Downey, Jr was well cast in the role. He had the right look and projected just the right amount of attitude without overacting. Gwyneth Paltrow played his trusty assistant, Pepper Potts. She didn't do a whole lot, but she served the purpose well. It was an enjoyable two hours of escape. Sometimes it is nice just to sit back and be entertained. The viewing experience was enhanced by the DLP digital projectors which provided for a sharp, clear picture and awesome surround sound. It also helped that the wheelchair seating at this theater is very good.

Echocardiogram

On Thursday I went to UCSD/Thornton Hospital in La Jolla for my echocardiogram. I was a little nervous, eventhough I felt it would turn out well. Since Duchenne Muscular Dytrophy affects the heart, you never know what may pop up. The echocardiogram went well, eventhough a medical student did the procedure. She was surpervized, so she did it correctly. My heart turned out to be in pretty good shape. It was beating well and my ejection fraction, the percentage of blood pumped from the heart chambers (ventricles), was over sixty percent. That is very good. The doctor will go over the results. He will contact me if there is anything of concern. But, I don't think he will. It gives me piece of mind to know that my ticker is still in good shape.

Trach Change

Today I went to UCSD Medical Center to see Dr. Harrel for a routine trach change and bronchoscopy. The trach slid in smoothly and the broncoscopy showed no scar tissue problems. This is good since I have had so much trouble in the past with scar tissue obstructing my trach. I always feel good when there are no problems. In February the doctor tried four different trachs before he found the right fit (see blog post of 2/12/2008). It turned out my original type of trach was the best trach for me. So today there was no experimentation with trachs. He put in the same type of trach. I made it clear that I wanted the same trach. Why fix it if it isn't broken? I will go back in July for my next trach change.

Cardiologist

Yesterday I went to see a cardiologist for the first time. I had never felt the need to see a cardiologist because I never had any heart issues. This is unusual since Duchenne Muscular Dystrophy affects the heart. I guess I have been lucky. But, since I am nearing 40 and have DMD, I felt that I should have the ticker checked out. I went to UCSD/Thornton Hospital in La Jolla for my appointment with Dr. Rasinghani. When I got there I was given an EKG and then the doctor came in to examine and talk with me. The EKG results were not a cause for concern to him. That was good to hear. But, an EKG only gives part of the picture. To get a closer look at my heart, the doctor ordered an echocardiogram. I will go in on May 1 to have it done. I feel that it won't reveal any problems. Nonetheless, I will be relieved to get it done for my own piece of mind. It is better to be safe than sorry.

Bruce Springsteen & The E Street Band

Last night (4/8) I went with my nurse, Ernie to see Bruce Springsteen and the E Street Band in concert at the Honda Arena in Anaheim. When I heard that he was on tour with The E Street Band, I had to get tickets. I was dissappointed that he was not coming to San Diego, but Anaheim is only about an hour and a half drive away. This was a concert I couldn't pass up. The drive up went very smooth; there was not much traffic. I listened to Bruce Springstreen on the way up to get me psyched up for the show. At the arena, we found a parking spot close to the entrance. An attendant led us past the crowds waiting to go through security before entering the arena and took us through a less crowded entrance to get in. Once inside we were ushered to the elevator and went up to level 4 where our seats were. My seats in the wheelchair section were very good; Ernie had a seat next to me. I was somewhat high up, but I could see the whole stage. There was also a videoscreen for some great closeups of the action. As we waited for the show to start we watched the people trickle in. It was great seeing people of all ages from teens to 60 year olds attending the show.

The show started late. I could feel the excitement and anticipation building as the wait lengthened. Finally, the lights in the arena went out and a steady roar arose from the crowds and chants of Bruce! Bruce! could be heard. The darkness was broken by a single spotlight which shone on a white calliope organ which rose from the back of the stage. It played some carnival music. At this point, the excitement was unbearable. Finally, the carnival music stopped and the calliope organ lowered back down. The stage lights came on and the crowd roared as the song Thunder Road blared from the speakers. Then without stopping they played Radio Nowhere, Lonesome Day, Gypsy Biker, Murder Incorporated, Magic, Atlantic City, Candy's Room, Reason to Believe, Prove It All Night, Because the Night, She's the One, Livin' in the Future, The Promised Land, and Brilliant Disquise. Next he played The Ghost of Tom Joad with Tom Morello from Rage Against the Machine. It was followed by Last to Die, Long Walk Home, Badlands, and Out in the Streets. Bruce and his bandmates gathered on the stage to bow. The cheering continued even after the band left the stage and the incessant chant of Bruce! Bruce! Bruce! could be heard. Bruce and his band returned for an encore. They performed Meeting Across the River, Jungleland, Born to Run, Dancing in the Dark (a six-year-old girl was brought up on stage to be his dancing partner), and ended with the rousing American Land. As I left the arena I felt elated. I had just seen a great concert.


This was my first time to see Bruce Springsteen in concert. I had always heard that he put on a great show. I was not dissappointed. I was amazed by the energy shown by the 58 year old Springsteen and his band. They performed for close to three hours without any breaks. From start to finish they played one great song after another. The drumming of Max Weinberg, guitar playing of Steven van Zandt, and sax playing of Clarence Clemmons, made for a great compliment to Bruce. The show went by too fast. It was well worth the expense.

The Olympic Torch Relay Fiasco

I am saddened to see the disruptions of the international Olympic torch relay. The International Olympic Commitee (IOC) may cancel the rest of it. The international torch relay has become a nice tradition. It symbolizes good will among man, and is not a forum for politics. I can understand the anger towards China over the unjust occupation of Tibet, but there are other forums for protest; the Olympics is not the right one. I am also bothered by talks of boycotts of the Beijing games. The atheletes give it their all to be a part of the games, and for their country to deny them this chance because of politics completely goes against the spirit of the olympics, and denies them their chance to shine. I was against the U.S. boycott of the 1980 Moscow games, the Soviet boycott of the 1984 Los Angeles games, and I would be against a boycott of the Beijing games. The Olympics should transcend politics. We should let China enjoy it's moment in the sun and push politics aside for the sake of the games.

4000+

Recently, the number of U.S. soldiers killed in Iraq surpassed 4000. This occured with little mention. I guess this country is suffering from Iraq War fatigue and is preoccupied with the worsening economy. But, we must not forget our men and women in uniform who have fallen halfway across the globe in the hornets nest called Iraq. It may be that there is a drop in violence, but our soldiers are still dying, along with many Iraqis caught up in the vicious cycle of sectarian violence. The tragedy is that all this violence was unleashed by an invasion based on the lies and deceit of the Bush administration. By invading a country which posed no threat to the U.S. and which had no connection to 9/11 and Al-Qaeda, makes the U.S. the belligerent. The neo-conservative hijackers of our government, including Dick Cheney, have been itching for a fight with Iraq, ever since the first Gulf War when George H.W. Bush decided not to march on Baghdad and topple Saddam Hussein. This is one of the wisest things George Bush Sr. did (next to signing the Americans with Disabilities Act). He understood the terrible consequences of such a course of action. I guess the son was easily influenced by the neo-cons, and not his father.


After the terrible events of 9/11 the U.S. received much good will from around the world and even support to go into Afghanistan. But, this goodwill was soon squandered by our rush to war with Iraq and our subsequent invasion of a country which didn't attack us. They scared the American public with the catchphrase, weapons of mass-destruction, and visions of mushroom clouds over U.S. cities. They also tried to link Iraq to the 9/11 attacks and Al-Qaeda. What many people don't realize is that Osama Bin Laden detested Saddam Hussein. Al-Qaeda was not in Iraq until our invasion and occupation of that country. But, with that said, more of the attacks on U.S. personnel have been carried out by Iraqi insurgents who don't want us in their country. Attacks have decreased recently because we have paid off the Sunni insurgents with large amounts of cash. But, the violence goes on with little end in sight.


I look forward to the day when our troops can return home. This will not happen anytime soon. The problem of Iraq will be inherited by the next president. If it is John McCain, we can expect to be in Iraq until who knows when. If it is Barack Obama, there is a good chance we will begin a withdrawal. Hillary Clinton is also for withdrawal. But, I don't completely trust her. She voted for the resolution to go to war against Iraq. Barack Obama was against the war from the beginning and still is. This is one of the big reasons why I support Obama for president.


I grieve for our fine men and women who have given their lives in the service of this country. I feel that they have died in vain. Also, I feel for the families and friends of the fallen. I am sad for the sons, and daughters who have lost their fathers or mothers, brothers and sisters who have lost a sibling, mothers and fathers who have lost a son or daughter, wives and husbands who have lost a spouse, girlfriends and boyfriends who have lost their sweethearts, people who have lost good friends. War creates a chain of tears. While I mourn the dead, my thoughts also go to the 20,000 or more who have been added to the the ranks of the disabled, through loss of limbs, head injuries, etc. And, last but not least all the Iraqis who have lost their lives, or have been injured as a result of the violence. There is so much suffering all around. We must not forget this.

A Day in Pompeii

Today I went to the exhibit, A Day in Pompeii , at the San Diego Natural History Museum. The ancient Roman city of Pompeii was buried by the massive eruption of Mount Vesuvius in 79 A.D. In 1748, the city was discovered and archaeologists began to excavate the site which was very well preserved. I have always been interested in Pompeii and was excited to have the chance to see artifacts from this city, especially since I am unable to go to Italy and see it in person. The display of everyday items, such as jewelry, household items, statues, and colorful frescoes gave an insight into the daily life of the city. They also showed a video with computer recreations of what the city and its buildings probably looked like. But, the most interesting were the body casts of some of the victims in the positions they were in as they died. The bodies of the victims were encrusted in ash, and their bodies decomposed, but the form of their body remained. An archaeologist decided to pour plaster into the hollow shells to create the body casts. There was a man covering his mouth and nose in a futile attempt to protect himself from inhaling the thick ash, there was a guard dog that was so well preserved that even the collar was clearly visible, and the most touching was the forms of a man and woman lying together; the man was reaching out to shield the face of the woman to protect her from the ash. I could just imagine the fear of these people as they were overcome by the ash. This helped to bring me in touch with the past. It is one thing to read about it, but to actually see items used by the people of Pompeii, and to see actual people that lived there makes the history of Pompeii less of an abstraction and more of a reality.

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.