Life of John

Happy New Year!

2012-01-01T13:07:00.000-08:00

Happy New Year everybody! It has hard to believe that 2011 has come and gone. 2012 arrived in such a flash. Time seems to go faster and faster, the older I get.

It will be a year of new possibilities. A year to do some of the things I didn't do last year. I will not do a summary of the past year. It is over and it is time to move on. This is part of my resolve to live in the now, and not dwell on the past and future. I will live day by day and not worry about things I can't change (easier said than done). Despite Duchenne Muscular Dystrophy, I am still here to see yet another year (In July I will be 44). For this I am thankful. Because of this gift, I must enjoy life to the best of my abilities. I will try not to sweat the little things. This year I hope to get even more active in disability advocacy and speak more clearly for those without a voice. With challenges to independent living for people with disabilities there is much work to be done. I may even take it to the street. I neglected my blog last year, but this year I plan to be more prolific. Now it is time to embrace 2012. Bring it on! I am up to whatever the year throws at me. Just hope I hit more home runs than strike outs.

Voice for Independent Living

2011-10-21T18:30:00.000-07:00

I am a member of Voice for Independent Living, a group that advocates for the rights of people with disabilities to live independently in their communities. We write to, and visit our legislator's offices, and attend rallys. The group also provides training in advocacy and community organizing.
Most of the work of the group these days focuses on programs, such as Medicare, MediCal, Social Security, and IHSS (In-home Supportive Services). All these programs, in one way or another, make it possible for people with disabilities, and the elderly, to live independent lives in their communities, and in their own homes.

In the present political, and economic climate, these programs are under attack. Severe cuts to these programs could make it more difficult for many people with disabilities, and the elderly to live at home. That would mean that many more people would end up in nursing homes.

This group also aims to fight an institutional bias, which tends to favor institutionalization over community based programs. Although there has been great progress over the years in independent living, this institutional bias still exists.

The group is part of Access to Independence of San Diego (A2I), a non-profit, non-residential center for independent living (CIL) that serves the city and county of San Diego. We meet twice a month at the A2I office in Mission Valley (8885 Rio San Diego Drive, Suite 131, San Diego, CA 92108). There is teleconference equipment for those who can't physically be there. We are a fairly small group and are in need of more members. The group is run by Raquel Vega, a community organizer. If anyone in the San Diego area would like to be a part of this group, please contact Raquel Vega at (619) 293-3500 ext. 236 or e-mail at rvega@a2isd.org

E-books

2011-08-30T19:03:00.000-07:00

I browse through the catalog of e-books on Amazon.com, find a book I want and download it to my kindle reader on my PC. In a matter of seconds, the book is on my computer and ready to be read.

It is so convenient, and for a person with a disability, like me, it makes reading a lot easier. I don't have to ask someone to get a book out of the bookshelf for me, and since I can no longer turn the pages of a book, the click of the mouse, or in my case a hands-free mouse, is all it takes to turn pages. If not for e-books, I would have to listen to audio books or have someone read to me. Listening to audio books can be enjoyable, but it is not the same as reading the written word on a page.

Though e-books are a great benefit to me and many others, I still miss the old-fashioned book. I remember going to the book store, perusing the stacks and buying a pile of books. The alluring smell of new books filled the store. I recall the crack of the spine of a new book as I opened it for the first time, and the sound of pages flipping as I moved through the book. The sight of various books filling a bookshelf was always a pleasant sight and much preferable to a shelf of knick-knacks.

I enjoyed going into used bookstores and looking for low-priced treasures and coming out with a bag full of books. The dusty smell of old books reminded me of neglected relics of the past. Or going to the library and roaming through the stacks and being overwhelmed with so many choices of books to check out. There were so many ways to interact with books.

I look at my once crowded bookshelves, and now see a paltry selection of books. It's like losing friends. Books were a tangible thing that could be touched, held, smelled. An e-book is a file on a computer, which you interact with in a more sterile way.

Though I may miss these things, I have learned to embrace this new technology. Without it, I would be unable to continue my love of reading.

Rush: The Time Machine Tour 2011

2011-07-24T17:37:00.000-07:00

On Saturday, June 18, I saw Rush, the Canadian rock trio, in concert at Cricket Wireless Amphitheater in Chula Vista. I have been a long time fan, yet this was my first time to see them in concert. Ernie, my nurse accompanied me. Going to concerts is one of the perks of working with me.

I became a fan of Rush thirty years ago. It was 1981 and I was in sixth grade. Rush had recently released their album Moving Pictures, and the song Tom Sawyer was getting much airplay on the radio. I enjoyed the song, so I bought the album. I listened and enjoyed all the other songs on the album. Over the years I bought all their albums and enjoyed them all. But, to this day, Moving Pictures, is my favorite Rush album.

By the time I arrived at the amphitheater, the excitement was growing stronger within me. I was actually going to see them live. My seats were located in the wheelchair section on stage right, behind the first section closest to the stage. Last time I was here for a concert, I sat on the left side where the only way to get there was by a cramped elevator, which I had to squeeze my chair into. There was only enough room for me, but not my nurse. I was nervous about being stuck in there alone if something went wrong with the elevator. I vowed never to sit there again, even though they were great seats. This time I sat on the right side where you can access the seating area by a ramp. It was nice not having to squeeze into the elevator. The view of the stage was excellent, especially since the wheelchair seating is raised enough that people standing in front of me won't block my view.

I was excited to be there and couldn't wait for the show to start. As the seats started to fill and as it neared showtime the chatter and excitement started to grow. The concert started with a humorous short video starring the members of Rush. It was shown on the large video screen at the back of the stage. The cheering started during the movie, but when the band took to the stage, the cheering rose to an incessant roar.

The three band members: Geddy Lee, vocals, bass, and keyboards; Alex Lifeson, guitar; and Neil Peart on drums, walked on stage as the pent up cheers filled the amphitheater. They started the set with the The Spirit of Radio, then played Time Stand Still, Presto, Stick It Out, Workin' Them Angels, Leave That Thing Alone, Faithless, a new song BU2B, Freewill, Marathon, and ended with Subdivisions.

After an intermission they showed another humorous short video, also starring the band members. As the video ended, they started the second set. The second set started off with all the songs off my favorite Rush album. Moving Pictures. This also marked the 30th anniversary of the release of this album. The songs off the album were Tom Sawyer, Red Barchetta, YYZ, Limelight, The Camera Eye, Witch Hunt, Vital Signs. They played Caravan , a new song which will appear on their upcoming album. There was an awesome drum solo (Love 4 Sale) by Neil Peart, in my opinion, one of the greatest rock drummers. Neil Peart was completely surrounded by his extensive drum set, which included acoustic, as well as electronic drums. He played with extreme intensity, and energy. At one point, the whole drum set rotated. Next they played the anthem Closer to the Heart. The song started with the instrumental song, Hope. It gave Alex Lifeson his chance for his guitar solo. During the song, people held up their lighters and lit up cell phones as they swayed to the song. After that, they played the sci-fi inspired 2112 Part I: Encore, and 2112 Part II: Temples of Syrinx. They came back for an encore and ended with the instrumental La Villa Strangiato and the hard-rocking Working Man.

After all these years they still sounded pretty good. Geddy Lee's voice was still good, even though he could not always hit the high notes like he used to. But, his rhythmic bass playing was still top notch. Alex Lifeson's guitar playing was still superb and masterful, Neil Peart's drumming was still full of power and energy. They could still rock. The stage show was full of lights, smoke, flames, and pyrotechnics. Above the stage was a futuristic-looking lighting rig with multiple arms, which moved up and down, and in different directions. This made for an awesome light show. Throughout the show on the video screen at the back of the stage they showed videos of various images and close ups of the band performing.

It was great to have seen my favorite band in concert finally. I hope to see them again on their next tour.

[Pictures were taken by Ernie]

Set List

The Spirit of Radio

Time Stand Still

Presto

Stick It Out

Workin' Them Angels

Leave That Thing Alone

Faithless

BU2B

Freewill

Marathon

Subdivisions

Tom Sawyer

Red Barchetta

YYZ

Limelight

The Camera Eye

Witch Hunt

Vital Signs

Caravan

Drum Solo (Love 4 Sale)

Closer to the Heart (with "Hope" solo intro)

2112 Part I: Overture

2112 Part II: The Temples of Syrinx

Far Cry

La Villa Strangiato

Working Man

[Set list courtesy of setlist.fm]

I'm Back.

2011-05-01T12:00:00.000-07:00

I 'm back. It has been a while since I last posted to my blog. I had some more health problems and took a break from blogging. My last two posts (Hospital, A Shocking Visit to the ER) were about my heart problems, and since then the health problems continued.

Last November 23rd, after days of feeling ill and having persistent high fevers, my doctor suggested I go to the emergency room. I am never thrilled to go to the hospital, but I knew that this was necessary. This had been going on too long and it needed to be taken care of.

I decided to go to UCSD/Thornton Hospital in La Jolla. Usually I go to Scripps Memorial Hospital in Encinitas, which is the nearest hospital. But since I had been at the ER in Thornton Hospital earlier in the month for my heart troubles, I thought it would be good to go there.

My nurse, Ernie, drove me down to the ER. At the ER, they did blood work, which usually requires quite a few needle pokes to get blood from me, took a chest x-ray, and started an IV. The x-ray showed pneumonia in my left lung. They started me on a series of strong antibiotics.

But, the pneumonia was just part of my troubles. While in the ER my heart started to act up. I had rapid heart rate and atrial-fibrillation. A few times it converted to a normal rhythm by itself, but a few times they had to use a drug through the IV to convert the heart. They managed to get it under control for a while.

After hours of waiting, I was finally moved to a room in the ICU. I was transferred from the gurney to the much more comfortable hospital bed. The gurneys in hospitals are like concrete slabs. I wonder what sadist invented them. When the respiratory therapist suctioned my trach, my heart started acting up again, and it did it again when the nurses turned me. Through the evening I kept having heart problems. The next two evenings were no different. Finally, after trial and error they found the right heart medication, Fleccanide. and for the rest of my hospital stay, my heart stayed in a normal rhythm. It was a relief to go days without my heart acting up. Now, my only concern was beating the pneumonia. As a person with Duchenne Muscular Dystrophy I understand how serious pneumonia can be if it is not under control. It has the potential to be deadly for people like me. In addition, they found fluid around my heart. The only treatment was to let it go away by itself.

Lucky for me, my hospital stay was only five days. Unfortunately I was there for Thanksgiving. It was strange not being home to celebrate with my family. This was the first time I had ever missed a holiday at home. I was feeling down that day. As I was lying in bed, bored and in need of cheer, a women brought a therapy dog into my room. The dog was a friendly golden retriever. The dog jumped up on a chair next to my bed and proceeded to lick my arm. It was like she was telling me that everything would be all right. That simple act made my day and lifted my spirits.

The next evening, my brother Bill surprised me by flying down from San Francisco and showing up at the hospital. That was a nice surprise.

During my stay at hospital , my mom, dad, brother, and sister took turns during the day being with me, and Ernie was there overnight. It is always nice to have someone there because the nurses are busy and can't always be there. Also, I am unable to push the buzzer if I need assistance. The nurses are very appreciative of the extra hands. I found the staff at Thornton Hospital to be pleasant and most had a great bed side manner.

On Monday, November 28, I was discharged. They sent me home on antibiotics. They thought the pneumonia was under control. I went home with the hope that they were correct. But, the fevers continued to plague me. One morning, while Ernie was trach suctioning me, he had trouble clearing the trach, and I was having trouble breathing. Since the ventilator wasn't giving me sufficient breaths, Ernie had to use the ambu bag to force breaths into my lungs. He had my mom call 911. The paramedics arrived and drove me to the ER at Thornton Hospital. They had to bag me the whole way. At the ER they took blood work, chest x-rays and started an IV. They diagnosed pneumonia and started me on IV antibiotics. I would have to be admitted. They had no room at Thornton, so they were going to send me to UCSD Medical Center which is farther away. Instead of going farther south, I decided to be transferred to Scripps Memorial Hospital in Encinitas, which is much closer to home. Scripps is a very good hospital and I have been there many times over the years. I was taken by ambulance up to Scripps Hospital. Once I arrived I had to do more waiting for a room to be made ready for me. After waiting hours there, I was finally taken to a room in the ICU. It's always a relief to get off the gurney.

The last time I was here was in 2006. It was a like a reunion, since many of the same nurses and respiratory therapists that treated me back then were there. I received very good care while I was there, as I did the other times I was there in the past.

I was in the hospital for five days. As usual, my mom. dad, and sister took turns spending time with me during the day, and Ernie stayed the nights. They treated me with IV antibiotics and had to wait and see. I responded well and it seemed like the pneumonia was again under control. On December 23, I was discharged and sent home on antibiotics. It was an early Christmas gift to be home in time to celebrate Christmas with my family.

It seemed like the pneumonia was gone. But, after I had finished ten days of the antibiotics, the fevers returned. I went back to spend two more days in Scripps Hospital and received more antibiotics. They sent me home without antibiotics. At the end of January the fevers returned. I saw the doctor, and he put me on antibiotics for ten days. This last regimen got rid of the last traces of infection and I have been in great health since.

A Shocking Visit to the ER

2010-11-16T13:30:00.000-08:00

Last Tuesday afternoon, after experiencing atrial fibrilation (when the two upper chambers of the heart, the atria, beat irregularly and out of coordination with the two lower chambers, the ventricles) and rapid heart beat, my nurse, Ernie drove me to the ER at UCSD/Thornton Hospital in La Jolla. In the morning, I felt my heart beating faster than usual, but thought it might slow down, as it usually does. I was lifted out of bed and into my wheelchair. As I sat in my wheelchair at my computer, my heart continued to race. Instead of going down, my heart rate got faster. As soon as Ernie showed up for work at 2:00, there was no change in my heart rate, so I had him drive me to the ER right away.

Once at the hospital I drove my chair as fast as I could to the ER. There were already a few people waiting as I arrived, and was afraid I would have to wait a while to be seen. Not a comforting thought as my heart continued it's rapid and irregular beat. To my relief, it was a brief, yet anxious wait. Since I had a heart problem, they took me in ahead of everyone. After a brief visit with the triage nurse I was ushered to an examination room where I was transferred to a gurney and put on one of their vents.

My heart rate got up to 182. They did an EKG and they had to find a vein to start an IV. They also took a blood sample from a good vein in my foot. The blood work showed that I had low potassium levels. About an hour later, after much searching and poking, and the help of an ultrasound machine they found a vein in my arm. Through it, they injected a medicine to slow my heart. Almost right away my heart slowed down. It felt like my heart would stop. Unfortunately, it only slowed my heart rate temporarily. This meant they would have to use electroversion, or electric shock to convert my heart back to a normal heart rhythm. It was not a very pleasant thought, but I steeled myself for this necessary procedure. I had an image of being shocked by the paddles and my body jumping. The doctor put me at ease by telling me that I would be asleep during the procedure, so I wouldn't feel a thing. I guess I have seen too many medical dramas. Instead of paddles, they stuck large pads to my chest and then injected a drug into my IV which knocked me out. They shocked me and my heart returned to a normal rhythm. I was allowed to go home when they were satisfied that my heart was staying in rhythm. I was at the ER for five hours and avoided a stay in the hospital.

This was not my first experience with rapid heart beat and atrial fibrilation. Last month I was hospitalized for rapid heart beat and atrial fibrilation after having a trach change(see Hospital blog post) I thought it was due to the Tetracaine, used to numb the trach area. In that case, my heart converted back to a normal heart rhythm by itself. It was also found I had low potassium. I thought it was an anomalous occurrence, but when it happened again without Tetracaine, I realize that there is something going on with my heart. I hope when I see my cardiologist next month he can get to the bottom of this. It is not something I want to keep experiencing. Since the shock, my heart rate has remained stable, but I am crossing my fingers that I won't have a recurrence.

Hospital

2010-10-29T13:15:00.000-07:00

On Tuesday, October 5, I went to UCSD Medical Center for my routine bronchoscopy and trach change, which I have done every two months, by Dr. Harrel in the pulmonary department. I have a bronchoscopy whenever I have a trach change because I have had problems with scar tissue in my trachea blocking the tip of my trach, and blocking air flow. The bronchoscopy allows the doctor to see where the scar tissue is so the trach can be placed away from it. The procedure usually goes like clockwork, and I am in and out of there in no time. But, not this time.

Before the doctor starts the procedure, the nurse squirts Tetracaine, a numbing agent, down my trach. It looked like she used more than usual. I usually get a litle light-headed and get a slight buzz, and it doesn't take long for the effects to wear off. But, during the procedure this time. the room started to whirl around, the voices of the doctor and nurses seemed distant and were fading in and out. It was like a bad trip. When I closed my eyes, I still felt I was spinning around. I also felt nauseous and drowsy. After the procedure, which went well--except for the bad trip--I was so out of it. I was still dizzy and had to keep closing my eyes, and was incapable of driving my wheelchair out of the room. Ernie, my nurse, had to use the attendant control on my wheelchair to drive me to the waiting room/recovery room, where I had to wait for the drug to wear off.

While waiting for the effects of the Tetracaine to wear off, my heart started to flip out. My heart rate shot up to 188, and my heart went into atrial fibrilation. This is when the atria, the two upper chambers of the heart, beat irregulary and out of coordination with the ventricles, the tw0 lower chambers of the heart. My heart was beating so fast, it felt like it would come out of my chest. After what seemed a long time, my heart returned to a more normal beat. It was a scary experience, especially since I didn't know what was going on. Dr. Yung, the ER doctor who was summoned when my heart acted up, said that they would have had to shock my heart back into rhythm if it hadn't settled down by itself. Yikes!

As a precaution, Doctor Yung, and Dr. Harrel, my pulmonologist, decided to admit me to the ICU overnight for observation. Not what I wanted to hear, but I knew it was probably for the best. After waiting for a few hours, they finally were able to move me to the ICU. I was transferred to a gurney and wheeled up to the ICU on the tenth floor. Being on a ventilator means that I always end up the ICU whenever I am hospitalized.

While in the ICU, they had to take the dreaded blood work. Whenever I need blood, I am usually subjected to numerous needle pokes until a decent vein can be located. I always end up feeling like a human pin cushion. This time was no diffrerent. After much poking, and the attempts of three different people, a vein was found in my wrist and thtey got the blood.

The results of the blood work showed very low potassium levels. Low potassium is dangerous for the heart. I was given potassium to boost my levels. The next day they had to take more blood. The vein in my wrist had collapsed, so they had to do more searching and poking. Finally they found a good vein on my foot. The results showed that my potassium levels were now too high. I could not be sent home until my potassium levels were normal. That meant one more night in the hospital, and more blood draws. Lucky for me, the vein in my foot was so good they were able to use it for all additional blood draws.

The next morning, I found out that my potassium levels were back to normal and I was given the green light to go home. I was glad to get out of there.

My stay was not too bad, though it was boring. All I did was sleep, and watch television. The good thing was that the selection of television channels was decent. During the day my mother sat with me, and Ernie, my nurse stayed the nights. My sister spent a few hours with me my last evening there. I always need someone with me when in the hospital because I can't press the call button, and the nurses are too busy with other patients to be there all the time. The nurses appreciate the extra help. The nurses were pleasant and professional. They were attentive, and turned me often to prevent bed sores. Even the respiratory therapists and doctors were friendly. They all had a good bedside manner. My night nurse for both nights, Fidel, was especially friendly and tried to make my stay as pleasant as possible.

I was glad that my hospital stay was short, and that I was in for something that turned out to not be life-threatening. But anything concerning the heart is scary,especially when you don't know what is happening at first. It is humbling to think that the beats of that fist-sized organ in my chest is all that is between me and oblivion. It is highly likely that my heart episode was brought on by the Tetracaine, and not due to some worsening heart condition . For that, I breathe a big sigh of relief.

San Diego Trolley Outreach

2010-08-14T19:30:00.000-07:00

On Monday, MTS (Metropolitan Transit System) of the city of San Diego, held an outreach for the disabled community. The purpose was for people with disablities, especially those using manual and power wheelchairs, to try out the ramp they are planning to put on all the new trolleys. They also wanted the input of the disabled community about the new ramps.

The event was held at the 12th and Imperial transfer station in downtown San Diego. They had a mock-up of the planned ramp as it would be with the doors of the trolley open. They had me drive my chair up and down the ramp, approaching from different sides and straight on, with high sides and without. I found it very easy to manuever my power chair up and down and the width of the ramp and doorway was just right. Afterwards I gave a positive evaluation.

Though it worked great with my power wheelchair, the manual wheelchair users had trouble pushing their chairs up and down the ramp. Being in a power wheelchair, I forget that manual wheelchair users use a lot of effort to move around. It was my hope, and the hope of the other people that took part in the outreach that our input would lead to a ramp that would work for all people with disabilities. It was our understanding that this was the purpose of the outreach.

I applauded what appeared to be a good effort of the MTS to reach out to the disabled community. But, it turned out to be an empty gesture. An acquaintance of mine who uses a manual wheelchair had trouble wheeling himself up the ramp--as did a lot of manual wheelchair users--and mentioned the problems and suggested they lengthen the ramp to make it less steep. He was told that the ramp could not be changed. The outreach turned out to be futile. Why did they have us try out the ramp and give our input when the design was already approved? It appears to me that this outreach was nothing but an attempt on the part of the MTS to appease the disabled community and to make themselves look good. It achieved neither purpose.

Visit to the Office of State Senator Mark Wyland

2010-08-04T19:49:00.000-07:00

On Tuesday, June 29 ( This blog post is over a month late. Blame it on summer procrastination) , I paid a visit to the local office of State Senator Mark Wyland. I went to his office to discuss my concerns about possible cuts to IHSS (In-home Support Services) and Medi-Cal and how cuts to these programs could adversely affect the ability of people with disabilities to live independent lives, and to be a part of the community

This is part of my work with Access to Independence of San Diego to advocate for the disabled community. Again I was accompanied by Rachel Vega from A2I. But, this time I did most of the talking. Senator Wyland was not available, so we met with his assistant instead.

I told Senator Wyland's assistant how important it was for a person with a disability to live in the community and to get in-home care or assistance. If I didn't have in-home care to help me with my everyday needs, then it would be very difficult for me to live at home and I would end up in a nursing home. A nursing home is a terrible fate for an independent person; in a nursing home there are all kinds of germs and viruses and it isolates people from the community. If cuts are made to programs that enable people with disabilities to live in the community, such as IHSS and Medi-Cal Waiver Program, then it be comes a quality of life issue. It would also violate the Olmstead Act, which is supposed to allow people with disabilities to choose to live in the community, and not to be forced into nursing homes.

His assistant seemed attentive to what I was saying and appeared to grasp the importance of what I was saying. Whether or not what I said will influence Senator Wyland or not is difficult to know, but it is still important to let my voice be heard and to try to give voice to an important issue for the disabled community.

Birthday at the San Diego Wild Animal Pak

2010-07-27T13:35:00.000-07:00

On Saturday, July 10 (this blog post is late, but better late than never), I went to the San Diego Wild Animal Park, to further celebrate my forty-second birthday. Instead of having a party, like I usually do, I decided to do something different for a change. I went with my nurse, Ernie; my mom, sister, my niece, Dallas; my nephews, Sterling and Stetson and my good friend, Peter, who came down from Palo Alto. We went at 4:00 in the afternoon and stayed till 8:00. This is a great time to go, since it is usually cooler, and the animals are usually less sluggish.

As we entered the park through the aviary to look at and find the various birds, my youngest nephew, Stetson grabbed a plump, slow-moving bird as it walked around the area. I thought the bird would peck him, but it just seemed surprised. There is never a dull moment when Stetson is around.

After that we went to the Lorikeet Landing, an aviary with tame lorikeets. The lorikeets fly around and like to land on visitor's outstretched arms, hands, shoulders, heads. They especially like to land on you when you have a cup of nectar. I had a cup of nectar placed on my wheelchair armrest, and in no time at all, I had a lorikeet on my arm. One also landed on top of my head. That was an enjoyable experience for all.

The next stop was a performance by an African acrobatic troupe from Tanzania. They put on an entertaining show. The show included a flaming limbo pole, which an acrobat moved under. Each time the pole was moved even lower, until it was so low that it didn't seem possible that anyone could pass underneath it. But, he managed to do it. One of the acrobats also did some fire eating. Also, there were flips, contortionism, and one of the acrobats stood and did handstands on an ever growing stack of chairs, which seemed like it would topple over at any moment. The amazing feats of the acrobats, plus their enthusiasm made for a great show.

After that show we headed to the Frequent Flyer bird show. The show--one of my favorites--includes birds from all over the world. I always like to see the various birds from around the world, especially the majestic birds of prey. There was also a brilliant colored macaw and they also had an African grey parrot, who talked and made animal and other sounds. I always find that to be amusing. During the show, a group of crows in a nearby tree, got in on the act and a white egret landed on top of a nearby tree. It was as if they felt left out and wanted to be noticed. The part of the show I always like is seeing the different birds-of-prey, such as hawks and an owl, flying over the audience (they fly so low that it looks like some audience members will get hit). They always look so graceful as they fly over. I also like to learn about the different birds.

After the bird show, we saw the gorillas. There were a few strutting their stuff around the enclosure. After a dinner break we saw the elephants, then the lions, and just like cats, they were sleeping. The male lion was sprawled out on the roof of an old jeep, while there were two lionesses on the ground. Then we ended the visit with a stop at the insect and reptile exhibit. I am always amazed by the variety and complexity of the insects and how some of them can blend in with their environment. My nephews seemed to enjoy this exhibit.

This was an enjoyable, yet low-keyed way to celebrate another birthday. It was nice to spend time with my family and my good friend, Peter. It also gave me a chance to spend some quality time with my niece and nephews.

Happy Birthday to Me!

2010-07-10T12:25:00.000-07:00

Yesterday I celebrated my forty-second birthday--another victory against Duchenne Muscular Dysrophy. When I was diagnosed at the age of six, the doctors said I would not live past the age of seventeen. How wrong they were! I am another year older, but I still keep on ticking. I celebrated this birthday with little fanfare. I just got together with my family and my good friend Peter, who came down from Palo Alto. It was a nice, low-keyed way to celebrate being another year older.

Sting

2010-06-27T12:02:00.000-07:00

On Sunday, June 13, I saw Sting in concert with the Royal Philharmonic Orchestra at Cricket Wireless Amphitheater in Chula Vista. When I heard that Sting was on tour I could not pass up this opportunity to finally see him. I have always been a fan of his from his days as frontman for The Police and throughout his solo career. I saw him with The Police during their reunion tour at the same venue in 2008, but now I would get to see him as a solo artist. His unique and varied music style has always appealed to me and I seldom get tired of listening to his music.

Not only was I going to see one of my favorite musicians, but I had very good seats as well. My seats were in the wheelchair section closest to the stage. To get to my seats I had to take an elevator down to them. It was a very close fit for my wheelchair inside the elevator, but they were able to close me in and lower me down. It was a little bit claustrophobic being closed in this metal box. I couldn't help thinking about what if it broke down while I was in it and how they would get me out if this happened. It was a relief to reach the bottom and be let out of the metal box. Next time, I will try to get seats on the side where there is a ramp instead.

It was a unique experience to hear Sting play his music to the accompianent of the forty-five piece Royal Philharmonic Orchestra (conducted by the energetic Steven Mercurio) and his five man band, led by his long-time guitarist Dominic Miller. The show started off with If I Ever Lose My Faith in You and was then followed by the upbeat song from The Police, Every Little Thing She Does is Magic. He introduced the orchestra by saying, "I have the biggest band I've ever had behind me." He also quipped, "They're called the Royal Philharmonic because I borrowed them from the queen."

During the concert he performed many songs from throughout his solo career and some memorable songs from The Police. Quite a few of his songs were reworked for the orchestra (some of these reworked versions of his songs will appear on his upcoming album Symphonicities).

He performed songs such as Englishman in New York, Straight to My Heart, Tomorrow We'll See, Russians, Shape of My Heart, She's Too Good for Me, Why Should I Cry For You?, Next to You, Roxanne , King of Pain, Every Breath You Take, Moon Over Bourbon Street, I Hung my Head, End of the Game. Fields of Gold, Mad About You, Fragile, Desert Rose.

I had a very enjoyable evening under the stars, listening to some great music. Sting did not disappoint. I liked his selection of songs and the way they sounded with the expansive, and sometimes powerful music of the orchestra. Most of his music was complemented very well by the orchestra. Sting's voice still proved to be very good. He also created a more intimate atmosphere by prefacing many of his songs with the background and inspiration for them, as well as anecdotes from his life growing up in the working-class area of Newcastle in Northern England. This added an interesting aspect to the show. When the show was over, I came away feeling upbeat and wishing for more. I was not disappointed. It was well worth the ticket price.

Kick for a Cure

2010-06-14T19:43:00.000-07:00

On Saturday, June 5th, I went to the fourth annual Kick for a Cure soccer tournament and festival. This event is organized by Duchenne San Diego, a charity which, through this and other events, raises funds for Parent Project Muscular Dystrophy (PPMD) to find a cure for Duchenne Muscular Dystrophy. The charity was started by the husband and wife team of Helena and Jason, whose nephew has DMD. They are truly dedicated to this cause, which is very dear to their hearts. Everyone that works for this charity, including Helena and Jason, are all volunteers. Since they don't have a payroll, they have a lower overhead, and can put more into their cause.

The event included a soccer tournament, with about fifty teams from all over San Diego County, competing on the atheletic field at Westview High School. They also had a festival area with booths with various vendors and a fun zone with games and a balloon bounce. Among the games was human foosball, which was a lot of fun to watch and was a lot of fun for the players as well. The local news station, KUSI was there to cover the event. I was on camera with the volunteers in an enthusiastic cheer which was aired to close the nightly news.

I am a big supporter of this charity and hope to be able to help them out in any way I can. Having DMD myself, I have a large stake in the search for a cure. I have lost friends and would like a cure to be found. A cure may not be found in time for me, but my hope is for the children with this disease, and those yet to be born with this disease. It is my hope that they will see the day when medical science will find a cure for Duchenne Muscular Dystrophy.

Visit to Assemblyman Nathan Fletcher's Office

2010-05-11T14:35:00.000-07:00

Yesterday I visited the local office of Assemblyman Nathan Fletcher to discuss proposed cuts to IHSS (In-home Supportive Services) and Medi-Cal. This was my second visit to the office of an elected official in my efforts at advocacy for the disabled community. (Last month I visited with Assemblyman Martin Garrick). I went on the visit with Rachel Vega and Connie Soucy, both from Access to Independence of San Diego. We met with a staff member of his to discuss our concerns. She seemed to be receptive to what we were trying to say. Though I am not a constituent of his, it is important to talk to as many elected officials as possible to let them know how devastating cuts to these programs would be to so many people with disabilities.

Cuts to these programs would make it harder, if not impossible for people with disabilities to continue to live at home and be a part of the community, and many would end up in the nursing home gulag. The nursing home industry would like this. More people would mean more profit for them, but it would do nothing for the quality of life and dignity of people with disabilities.

Though I understand the need for cuts to the California state budget, they can't cut everything. Cuts in programs that allow people with disabilities to be a part of the community would be devastating as well as more expensive to the state in the long run: warehousing people in nursing homes is far more expensive than giving people in-home care and support.

In-home care and support, though it allows people with disabilities to be a part of the community, and is cheaper than nursing homes, has many more benefits. In-home care and support creates thousands of jobs for health care workers and home health care aids; allows people with disabilities to hold jobs; it makes the quality of life and well-being of people with disabilities so much better; people with disabilities spend money in the community, and if they work, they pay taxes in addition to spending money. Also, making it harder for people with disabilities to live in the community would be a violation of the Olmstead Act of 1999, which affirms the right of people with disabilities to live in the community.

Governor Schwazenegger, the State Assembly, and State Senate, would be well-advised to reconsider devastating cuts to IHSS and Medi-Cal. I hope my efforts as a representative of the disabled community to protect it's interests, though small, will have some influence on the politicians in Sacramento.

Visit to Assemblyman Martin Garrcks Office

2010-04-27T13:42:00.000-07:00

On Friday, April 16, I paid a visit to the local office of Assemblyman Martin Garrick(R) to discuss possible cuts to IHSS (In Home Support Services) and Medi-Cal (Medicaid). Since I am a constituent of his, it was important that he hear from one of his constituents who could be adversely affected by cuts to in-home care. I went with Rachel Vega and Connie Soucy, both from Access to Independence of San Diego. The Assemblyman was up in Sacramento, so we met with his staff.

With the serious budget problems in California there is a need to make cuts, but they are looking at these programs which are beneficial to people with disabilities to save money. IHSS, which is faced with cuts or even worse--elimination, is a very important program for people with disabilities and the elderly. It allows these people to get assistance so that they are able to live in the community, rather than being shut away and isolated in institutions. It also allows people with disabilities to hold jobs and to contribute to the community. I get my in-home nursing care through the Medi-Cal waiver program, which allows me to live at home and be part of the community rather than a nursing home. If Governor Schwarzenegger can think about making cuts to or even eliminating IHSS, there is no reason to think he won't put his sights on the Medi-Cal waiver program. I had to impress on them the importance of letting people with disabilities live in the community, be it through IHSS or the Medi-Cal waiver program.

I spoke to them about the benefits of a person with a disability living in the community through my personal experience. Since I was trached and vented almost sixteen years ago, I was able to live at home and not end up being sentenced to a nursing home. Being able to live at home, has allowed me to be a part of the community, to get out in the community, spend money in the community, and have a better quality of life. I told them people are more susceptible to all kinds of bugs and viruses in a nursing home and that it is much cheaper for a person to live at home than a nursing home. (With IHSS, for example, it costs about $10,000 a year for a person to live at home, versus $50,000-$70,000 a year for a person to be in a nursing home.). If the IHSS cuts occur home health care aides could lose jobs, or if the program were eliminated, over 24,000 people in San Diego County would be out of work. At a time of high unemployment in the state this would be unwise.

I felt that his staff was attentive to what we had to say. It is my hope that we made some impact, and that maybe what we said will help in the effort to save IHSS and allow people with disabilities to continue to live in the community and keep their dignity. This proposed cost-cutting action, if enacted would end up costing the state more in the cost of housing many more people in nursing homes (The nursing home industry would benefit from more inmates to take care of). It would make it harder for those people with disabilities who hold jobs and who rely on in home care to get them ready for work, to hold their jobs. This could make the 70% unemployment rate for people with disabilities higher, and without a job, they will not make money, and without money they won't be spending money or paying taxes. Some people will say that family members should help take care of their own. That would be true in an ideal wold, but family members can only do so much, especially if they have jobs and have other responsibilities. I felt good being able to do my part in the fight to allow people with disabilities to continue living in the community, without fear of ending up in a nursing home and losing their quality of life. The disabled community has made great strides in it's fight for independent living and it would be a shame to take such a big step backwards.

Disability Advocacy

2010-03-15T14:54:00.000-07:00

For far too long I have sat on the sidelines and watched while others have fought for the rights and interests of people with disabilities. I have decided to get off the sidelines and enter the fight to protect the rights and interests of people with disabilities. It is time for me to make a contribution to society and to stop doing nothing.

I am getting involved in disability advocacy through Access to Independence (A2I), an independent living center (ILC) in San Diego and with the help of Rachel Vega, an organizer. Through her I am learning how to be an advocate. I am also getting involved in advocating and educating about assistive technology (AT). I got in to this also through A2I and the help of Maria White, the AT specialist there.

My involvement in disability advocacy will give me a purpose in life and something to be involved with. It also has the potential to help many people, not just myself.

Merry Christmas!

2009-12-24T14:26:00.000-08:00

Hope everyone has a very merry Christmas. This is always such a wonderful time of the year. The spirit of peace, goodwill, and giving to others is in the air. If only this spirit could last all the year. I get great pleasure in the giving to others. This year, as I have been doing for the last few years, I donated to Toys for Tots. I like the the thought that the toys I donate will brighten the Christmas for children who may otherwise receive nothing. It is even more important in these hard economic times when the need is greatest.

The spirit of this season encouraged me to commit a random act of kindness. I cleaned out my closet to get rid of clothes I no longer wanted or needed. I had a nice, warm jacket and some shirts, and decided to give them to a needy person. Whenever I went out in my van, I looked out for a homeless person to give them to. I could not seem to find anyone. But, yesterday, Ernie (my nurse), and I pulled into a parking lot along the San Diego waterfront to wait till my brother's plane arrived at Lindbergh Field. As we pulled in to the parking lot we spotted a homeless man walking along the waterfront. He was all alone and was talking to himself. I had found, my recipient of my random act of kindness. Ernie, and I approached him and asked if he needed a jacket and some shirts. He said yes and we handed over the clothes. He was so grateful and couldn't stop thanking me. My small gesture was a big deal for him.

He was down and out with no permanent place to live, and living out of motels. We listened politely to his paranoid story that the government was after him because he was an assassin. Even though his story was crazy, we stayed a little while longer to listen to him. We took away some off his loneliness for a brief time It felt good for him to have someone to talk to. I felt great the rest of the day knowing that I had helped a person in need. It may have been a small gesture, but it brightened some one's day. That made it well worth it.

I would encourage all of you to commit a random of kindness, no matter how small a gesture it may be. It is a great feeling and is part of the spirit of giving of this season. But, all through the year this spirit should be encouraged.

Josh Winheld 1978-2009

2009-12-05T16:02:00.000-08:00

Today I received some sad news. Josh Winheld, who I got acquainted with on the internet group, DMD Pioneers, lost his battle with Duchenne Muscular Dystrophy today. I didn't know Josh as well as others did, and chatted with him on the internet only a few times, but I did read many of his postings to the group. He was kind, upbeat, and didn't let his disability get in the way of enjoying life. Any time a DMDer is lost, it is a loss to all of us with DMD, and is a reminder of our own mortality. The wish for a cure for DMD also becomes even stronger. It is a reminder to all, not just those with DMD, to love and enjoy life while you can, for you never know when your time is up. Josh is now at peace. My thoughts are with his friends and family. He will be missed by all, and has left a positive impact on all who knew, or were acquainted with him.

Thanksgiving

2009-11-27T17:40:00.000-08:00

I hope all my readers in the United States had a great Thanksgiving. My Thanksgiving was spent at home with the family. The best part of this holiday is spending time with my family. It is also a time for reflection on things that I am thankful for. Here are the things that I am thankful for: my supportive family, my good friends (online and off), my in-home nursing care (most especially Ernie who has taken care of me for fifteen years), that I live at home and not in a nursing home, the adaptive equipment that allows me to use the computer, my accesible van which allows me to get out in the world, my power wheelchair which allows me to get around, and my ventilator which has extended my life.

2009-11-08T18:06:00.000-08:00

Here is an amusing sign, which I found on the blog, A Stellar Life.

Miramar Airshow

2009-10-22T19:00:00.000-07:00

On Friday, October 2, I attended the annual air show at MCAS (Marine Corps Air Station) Miramar for the third year in a row. It was just as thrilling this time as the other times. There is always something exciting about the roar of jets overhead. As usual, the show was full of amazing aerial acrobatics. I didn't see every performance, but the ones I did see were well worth it. Among the performances I saw were, The Oracle Challenger, The Red Bull MIG jet, a legacy flight of an F-16 fighter jet and the P-51 Mustang fighter plane from World War II, The Patriot Team whose jets trail red, white, and blue smoke as they perform their stunts, a helicopter that performed some amazing stunts, such as loops (I had never seen a helicopter able to do loops, and have never seen one able to go upside down), and the AV-8B Harrier jet. It is always a sight to see a jet fighter take off and land vertically. But, the headliners of the show are the Navy Blue Angels. They put on another spectacular show. The excitement builds as the Blue Angels start up their engines and then start their slow taxi in pairs past the viewing stands and then they take to the skies with a roar. As usual, their performance was a spectacular demonstration of great skill and precision, The planes fly so close together at times that it appears that they might crash into each other or touch wingtips. It is an awe-inspiring sight to see the Blue Angels. I look forward to seeng them next year.

Dave Matthews Band

2009-10-01T19:00:00.000-07:00

On Saturday, September 12, I saw Dave Matthews Band in concert at Cricket Wireless Amphitheater in Chula Vista. I have been a big fan for years, but this was my first time to see them live in concert. My seats were very good. They gave me an unobstructed view of the stage. It is great that they accomodate their wheelchair-using patrons very well.

The opening act was Switchfoot, a band out of San Diego. I had heard of them before, but had never heard any of their songs. They turned out to be a pretty good band. They performed a lively set which was well worth watching. During the opening act, the seats were sparsely filled. A lot of people were more interested in the main act. After Switchfoot left the stage, the seats started to fill up with eager fans. As we waited for the show to start, a large white sheet was hung from the light rigging. It hung down in front of the stage. Once everything was set up, the lights went out, and an incessant roar of cheering fans filled the air. The lights came on and the band members took the stage. As the band members took the stage, their distorted silhouettes were visible behind the sheet like shadow puppets. They started to play the opening notes of Funny the Way It Is, and with the first drum beat the sheet ripped away. The crowd went wild. After that they played, Spaceman, Don't Drink the Water, Proudest Monkey, Satellite, Shake Me Like a Monkey, Lying In the Hands of God, Seven, Crash Into Me, You Might Die Trying, Why I Am, Lie In Our Graves, Squirm, Alligator Pie, You and Me, Jimi Thing. They left the stage, and then came back for a three song encore of My Baby Blue, Grey Street, Time Bomb. They played almost all the songs off their new album, Big Whiskey and the GrooGrux King, but they also played a good number of songs from their other albums. They played one great song after another. The two and a half hours just zipped by.

The performance was energetic and upbeat from start to finish. Dave and his bandmates enjoyed performing for the fans, who enjoyed the performance as well. They are a band that loves to play together. They complement each other well. Dave Matthews unique vocals and acoustic guitair along with the awesome violin playing of Boyd Tinsley, powerful drumming of Carter Beauford, and the rhythmic bass playing of Stefan Lessard makes for a great sound. They were joined by a fine group of touring musicians: Tim Reynolds on electric guitar, Rashawn Ross on trumpet, and Jeff Coffin on Sax. Jeff was filling in for LeRoi Moore, a founding member of DMB, who died last year. It is a shame that I never got to see him perform with the band. But, Jeff did a fantastic job filling in. At one point he played an alto and a tenor sax at the same time. They did some great jams and Boyd had some great violin solos. The band is great on their albums, but they are even better live. It was a memorable concert and they are a band I would like to see again.

Quotes

2009-09-01T10:00:00.000-07:00

"One good thing about music, when it hits you, you feel no pain. "

Bob Marley

Alan Adams 1966-2009

2009-07-26T18:46:00.000-07:00

This morning started off on a sad note. I received news that my friend, Alan Adams died last Wednesday in the hospital. Alan, like me, had Duchenne Muscular Dystrophy, a disease that has taken away so many people. This news rudely slapped me in the face with my own mortality, and has increased my wish for a cure. It also shows that you must take every day as it comes and to enjoy life; because you never know when that bell will toll for you.

I met Alan, five years ago, on the internet in the group DMD Pioneers. We would chat on Yahoo Messenger, or talk via the internet. Sometimes we would play on-line games as we talked. Often, we invited a fellow DMDer, Jeff Petrie to join us in the fun. I never met Alan in person, since he lived in Pennsylvania. He was humble, kind, good-natured, and had a love of life. I always enjoyed talking with him, and he was glad to talk to me. My thoughts go out to his family on this day that he was laid to rest. It was great to have known you, my friend. You will be missed.

41st Birthday Party

2009-07-17T12:00:00.000-07:00

Last Saturday, July 11 was my forty-first birthday party. This year, I decided to keep it small, and simple. I just invited close friends and immediate family. It was a low-keyed affair. We hung out around the pool at my parent's and my house, socializing and having a good time. My best friend Alex painted a portrait of me with oil paints in twenty minutes (check out his blog post about the portrait). It provided an interesting diversion as my guests watched the portrait take shape. The final product was very good.

As I sat there visiting with my friends and enjoying the day, I felt blessed to have the friends and family that I have. Everyone truly enjoyed spending the afternoon in celebration of another birthday. Sometimes the simplest celebrations are the most enjoyable. My fortieth birthday party was so wonderful that there was no way it could be surpassed. Everyone still has fond memories of that day. In homage to last year's celebration, the cake was decorated with butterflies (a reference to the release of monarch butterflies at last year's celebration), and said Happy 1st Anniversary of Your 40th Birthday. Towards the end of the party, my niece, Dallas sang a song for me from the swimming pool (an interesting choice of venue). That was very thoughtful of her and a special touch to end off an enjoyable afternoon. A nice day spent with my family and friends is the best present I can ever receive. Everybody left the party in good spirits. A sign of another wonderful party.

41 Years Old

2009-07-09T15:56:00.000-07:00

Today I am forty-one. For most people forty-one is just another birthday, but to me every birthday is a milestone. When I was first diagnosed with Duchenne Muscular Dystrophy around the age of six, the doctors didn't expect me to live past my mid-teens. Thankfully, they have been proven wrong. So, every birthday for me is a celebration of life. Here's to life!

4th of July

2009-07-06T20:30:00.000-07:00

The annual Fourth of July parade in Rancho Santa Fe is always a nice way to celebrate the holiday. This year was no exception. It seemed like the whole Ranch was there. The community really gets into the spirit of the day. There were many people in red white and blue lining the sidewalks on either side of the main street, Paseo Delicias. Many people were also waving flags as the procession moved along. The singing of the National Anthem was the signal for the parade to start. As is customary, the procession was led by the Marine Corps color guard, then the fire engines of the Rancho Santa Fe Fire Department with sirens blaring rolled through. After was the procession of classic cars, tractors, children on decorated bicycles and other modes of transportation, and people riding horses. My niece and nephews took part in the parade. My nephew, Stetson was with his Cub Scout troop riding a skateboard. In some of the cars were some of our politicians: our Congressman, Brian Bilbray; Assemblyman Martin Garrick; County Supervisor, Bill Horn; and the new Sheriff of San Diego County, Bill Gore. After the parade everyone gathered on the village green for food and music by an orchestra playing patriotic music and other American Standards. It was a nice way to spend the afternoon. The whole event has a small town feel to it, and brings the community together. Events like this remind me why this is a great community to live in.

In the evening, my sister and brother-in-law came over with my niece and nephews for a nice dinner outside on the sun deck. After that, I watched the annual Fourth of July concert from Washington, D.C. Since I wasn't able to go see fireworks, it was nice to see the fireworks over Washington, D.C. on television. It is not the Fourth of July without fireworks.

Sunday Quotes

2009-06-28T11:48:00.000-07:00

"When you come to the end of your rope, tie a knot and hang on."

Franklin D. Roosevelt

15 Year Anniversary

2009-06-24T18:34:00.000-07:00

This month marks fifteen years since I was trached and vented. Being trached and vented gave me a new lease on life. If I didn't decide to have this done, this would have been the fifteenth anniversary of my death. Choosing life was a no-brainer; I wasn't ready to cash in my chips just yet. At twenty-six, I still had a lot more living ahead of me, and a lot to live for as well. Being trached and on a ventilator has it share of challenges, but it sure beats the alternative. No matter how tough things can get, I never for a moment regret my choice to live.

Sunday Quotes

2009-06-21T12:09:00.000-07:00

Turn your face to the sun and the shadows fall behind you.

Maori Proverb

Playing For Change--One Love

2009-06-20T10:36:00.000-07:00

Friday Jokes

2009-06-19T14:25:00.000-07:00

Here is another joke I found on the internet.

An elderly woman decided to have her portrait painted. She told the artist, "Paint me with diamond earrings, a diamond necklace, emerald bracelets, a ruby broach, and Rolex watch."

"But you are not wearing any of those things," replied the artist.

"I know," she said. "It's in case I should die before my husband. I'm sure he'll remarry right away, and I want his new wife to go crazy looking for the jewelry."

Rancho Santa Fe School Pre-Demolition Reunion

2009-06-15T12:00:00.000-07:00

1. The group shot in the amphitheater. 6-3-2009

2. The ICM
3. The LGI

4. Dr. Rowe, me, and the time capsule 6-6-2009

5. The amphitheater

6. Elementary School classrooms

7. Elementary School classrooms

8. The trees

9. Elementary School classrooms

10. Elementary School classrooms

11. Teachers. (L-R) Mrs. Brown, Mrs. Jacobsen, Mrs. Bohrer, Ms. Miano (Mrs. Spaulding), Dr. Rowe, Mr. Spivey, Mr. Myers

12. Mrs. Spaulding and me

Rancho Santa Fe School, where I attended from Second through Eighth Grades (1976 to 1983), is in the process of being demolished to make room for a larger, more modern school. The elementary school, built in 1955, and the Middle school, built in the early 1970's, served the community well. But, as the student body has grown in recent years, the old school was no longer adequate. It is sad to see it go, but the fond memories of my days there will remain.

With the news that the school would soon be demolished, my sister, Bibbi (RSF School class of 1978), the alumni director for the school, decided to plan a reunion of alumni and past teachers. Within ten days she was able to round up alumni and teachers for this memorable event.

On Wednesday, June 3, my sister organized a photo shoot of mostly alumni and teachers who still live in the area, to appear in the local paper, The Rancho Santa Fe Review. Before the photo shoot, we gathered in the gym (spared from demolition), for a school assembly to mark the end of the school year and the end of the old school. The alumni and teachers were introduced to the student body. It was nice to see my niece, Dallas, and nephews, Sterling and Stetson (RSF classes of 2013, 2012, and 2015) among the student body. After the assembly, we gathered in the amphitheater for the photo shoot. It was great seeing the different generations of students gathered together along with past teachers. The oldest alumnus was Mr. Clotfelter who attended the school in the 1930's. My niece and nephews were among the present student body in the photo. My brother, Bill (RSF School class of 1980), was down from San Francisco, to be a part of this photo shoot.

On Saturday, June 6, the much anticipated reunion was held on the grounds of the school. There were about two hundred people in attendance. This reunion was also an occasion to unearth the time capsule, buried in 1976. Since it would be covered up by the new school, the time capsule had to be recovered.

The time capsule was the idea of Mrs. Spaulding, who had students fill it with mementos from 1976. The box was filled with argon gas to preserve the contents and was buried in a spot near the flagpole. A plaque was placed over it to mark the spot. The plaque had since disappeared, so people who were present at the burial had to go by memory to try and locate it. With the help of workmen with a backhoe and shovels the area where the time capsule was thought to be buried was dug up. They kept digging and digging, but there was no sign of the time capsule. It looked as if it wouldn't be found. They dug up another spot and found something. It was the time capsule. The metal box, wrapped in black plastic, was lifted out of the ground. The plastic was unwrapped and the box was revealed. It was a little rusty, but was still intact. In the excitement many people wanted to open the time capsule then and there. But, it was decided to rebury the time capsule on the grounds of the new school, and have it unearthed and opened in 2026 as originally planned. Hopefully there will be another reunion at that time.

After the unearthing of the time capsule, everyone continued to mingle, and reminisce. It was nice to see so many smiles and happy sounds. Everyone was given permission to spray paint messages on the walls of the school.

It was great seeing so many of my old classmates. Many of them I haven't seen in many years. It was nice to reminisce about the good old days. Not everyone was as recognizable all these years later. It was good that everyone had name tags. Being that I was the only student in a wheelchair, it was not hard to recognize me. It was also great to see some of the teachers there. The teachers in attendance were Mrs. Spaulding (now Donna Miano), Mr. Spivey, Mrs. Brown, Mrs. Jacobson, Mr. Myers, Mrs. Bohrer, Mrs. Sumida, Mrs. Stumm. Of course, no reunion would be complete without our beloved principal, Dr. Rowe.

Dr. Rowe, who is still going strong at eighty and is just as genial, was the heart and soul of the school. He remembered all the names of the students, cared about all the students, and always had encouraging words. I remember him telling me, "Go get 'em, tiger!" Despite my disability, he treated me just like any other student. This made me feel accepted and like I belonged. I also have memories of his blue VW Bus. After he retired, the school was renamed R. Roger Rowe School. A much deserved honor for a special person.

As I drove around the school, it brought back many memories. I was struck by how much smaller the school looked. It was as if it had been shrunk. I visited my old classrooms and other parts of the school. It was hard to believe that in a matter of days it would all be reduced to rubble and would only exist in my memories and in photographs. As I visited my old class rooms, I could still remember all the names of my teachers. Second Grade, Mrs. Seaman; Third Grade, Mrs. Watson; Fourth Grade, Mrs. Pierce; Fifth Grade, Miss Brugman; Sixth Grade, Mrs. Jaffari (previously Mrs. Watson); Seventh and Eighth Grade, my homeroom teacher was Mrs. Spaulding.

All of these teachers had some impact on me in some way or another. They all treated me no different than the other students. I got in my share of trouble. I could be quite feisty at times. I remember in Fourth Grade getting upset at Mrs. Pierce and throwing a pencil at her. The pencil missed her, but boy did I get in trouble. Of all my teachers though, the one with the most impact on me was Mrs. Spaulding.

Mrs. Spaulding was one of those teachers that you don't forget. She made learning fun and encouraged us to do our very best. She truly cared about her students. Her teaching of history contributed to my love of history.

Memories

Hanging out at the IMC (Instructional Media Center). I believe Mrs. Flood was the school librarian, later to be replaced by Mrs. Rau.

Hanging out with my very best friend, Danny Zappia (R.I.P.) He was my constant companion, protector, and helper. I remember before I got a power wheelchair, he would push me everywhere in my manual wheelchair. Sometimes we would zip around the school. One time as we were racing around campus, we wiped out. He picked me up, put me back in the chair, and we continued on our way. Danny moved to Virginia in the middle of Seventh Grade, where in March of 1982, he and his sister, Karen died in a car accident. I also have fond memories of hanging out with my other best friends Sandy Schaefer (now going by the name Alex), and Peter Wilmans (Class of 1982)

I remember getting my first power wheelchair in Fifth Grade, and the freedom to scoot around the school without assistance. It was also a form of transportation for my friends who would hitch rides on back of my chair.

School dances and school plays in the LGI (Large Group Interaction). I remember dancing in my power chair until the battery got low. I never ran over any girl's toes. A band called the Pin Stripes performed at some of our Seventh and Eighth Grade dances. I remember my sister playing Daisy May in the school production of Lil' Abner.

I remember all the school assemblies, award ceremonies, pep rallies, and campaign speeches for the school elections in the amphitheater.

I remember in Sixth Grade running for school Secretary. I wrote what I thought was a great speech and practised until I thought I had it memorised. I was so confident that I went out to the amphitheater in front of the whole school without my notes. I got to the podium and forgot the text of my speech! I came up with some lame speech off the top of my head. I was so embarassed. In seventh Grade, I ran for Vice Prsident. This time I had my speech notes and gave a good speech. I remember losing to Hillary Sammis by a slim margin. David Hillman was elected president. Though I lost both elections, it was a great experience.

The Halloween Carnival. They had a parade through town of all the kids in their costumes, game booths, a cake walk, and rummage sale. I remember the Brue family having some of the most creative costumes.

The Seventh and Eighth grade trip to Washington, D.C. in 1982 with Mrs. Spaulding. The highlight was meeting President Reagan in the White House.

The Christmas Sing at the Inn, where each class sang a different Christmas song to the accompaniment of Mr. Frees on the Piano. I remember it was outside on the front steps of the Inn. It was also freezing out there.

The opening of the computer lab in 1982. It was equipped with the high-tech Apple II computers. The computer teacher was Mr. Casillas.

Happy New Year!

2009-01-05T20:00:00.000-08:00

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

2008-12-12T18:28:00.000-08:00

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

2008-11-27T12:54:00.000-08:00

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.

Family
Friends
Good health
Being alive
Living at home and not in an institution
My caregivers (especially Ernie, who has worked for me 14 years)
My van
My cat, Lucky

He Did It!

2008-11-02T15:32:00.001-08:00

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

2008-11-01T17:20:00.000-07:00

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

2008-10-12T11:44:00.000-07:00

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

2008-09-29T19:30:00.000-07:00

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

2008-09-18T19:06:00.000-07:00

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

2008-09-11T11:22:00.000-07:00

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

2008-09-05T13:28:00.000-07:00

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

2008-08-01T14:33:00.000-07:00

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

2008-07-23T20:13:00.000-07:00

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

2008-07-21T18:29:00.000-07:00

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

2008-07-16T17:18:00.000-07:00

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

2008-07-09T15:26:00.000-07:00

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

2008-07-04T16:44:00.000-07:00

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

2008-06-27T14:53:00.000-07:00

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

2008-06-20T16:04:00.000-07:00

Lucky lounging around.

Medi-Cal Under Assault

2008-06-05T18:51:00.000-07:00

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

2008-05-27T10:17:00.000-07:00

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

2008-05-23T17:18:00.000-07:00

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

2008-05-20T19:30:00.000-07:00

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

2008-05-14T20:10:00.000-07:00

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.