Happy New Year!

Happy New Year! I can't believe that 2009 is here. It seems that 2008 zipped by. Since it is a new year, it is time to look back on my life in the past year.

On the health front, 2008 was a very good year for me. Last year I had no problems with trach obstructions, as I did in 2007. For that, I am thankful. Also, a visit to the cardiologist and an echo cardiogram revealed that my heart was in good condition, despite the Duchenne Muscular Dystrophy. That put my mind at ease.

This year marked two significant events in my life. June was the fourteenth anniversary of me being trached and vented. This is always one of the most important events in my life. It represents my new lease on life, and the reason why I am still here to write this. In July, I reached a big milestone in my life: I turned forty. I celebrated with family and friends with a Spanish-themed party with flamenco dancers, a singer, and guitarist. It was a great way to celebrate my entrance to the forty something club, and most importantly, it represents yet another victory over Duchenne Muscular Dystrophy.

In the area of entertainment, it was a good year. In April I went to the Honda Arena in Anaheim to see Bruce Springsteen and the E Street Band. It was a great show. In May I went to the Cricket Wireless Amphitheater in Chula Vista, to see The Police in concert. It brought back memories of the 1980's, and after all these years, they still sounded good. In July, I saw Chris Isaak in concert at the Valley View Casino on the Indian reservation near Valley Center. He put on an enjoyable show. In October, I attended the Miramar Air Show, at MCAS Miramar in San Diego. It was great seeing all the awesome flight demonstrations, especially The Blue Angels who put on an amazing show.

The most unique event of the year occurred in February. I attended the Dinner with the Pros in, a charity dinner and auction, attended by athletes from the NFL, MLB, PGA. LPGA. I enjoyed meeting athletes, such as Junior Seau, Drew Bress, Phil Nevin, and David Wells, among others. It was an enjoyable evening, and for a good cause: to help troubled teens. I was able to attend thanks to friends John and Holly Carney, who organized the event.

The most interesting event last year, was going to the exhibit, A Day in Pompeii. It was a fascinating exhibit about the life in the ancient Roman city buried by the eruption of Mount Vesuvius. The artifacts unearthed from the site, as well as the body casts of some of the victims buried in ash from the eruption, brought the past alive.

The only negative note in my life last year, was my close call with death in September. This occurred when my trach was accidentally pulled out and I stopped breathing. Thanks to the paramedics and the medical staff in the E.R., I was kept alive.

As usual, Thanksgiving and Christmas were enjoyable times spent with my family. That is what the holidays are all about.

In Memoriam

Cody Namesnik 1978-2008

A fellow DMDer, who lost his battle with pneumonia. He was a kind, and good-natured person. I never met him in person, but knew him online and chatted with him. He is still missed.

Michael Martin 1930-2008

A dear family friend. He died peacefully in his sleep. I miss his wit, interesting stories, kindness, and the visits. It was a privilege to have known him.

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.