Today is my Birthday

Today is my birthday. I am forty-four years old. Despite Duchenne muscular dystrophy, I have made it another year. I am lucky to have come this far. Many people with DMD have not made it past their teens or twenties. When I was first diagnosed at six, the doctors expected me to die in my teens. I have proven them wrong again and again.

I refuse to give up on life, no matter how hard it gets. The negatives of living with DMD, which can be so dishearting and frustrating, are overweighed by the good things in life. A bad day when you are so frustrated that you feel like giving it all up can be remedied by the sunshine on my skin, the sight of a colorful bird at the feeder, the beautiful melody of singing birds, a sublime sunset, friends and family, my cat curled up at my feet. The simple things in life make it all worthwhile.

I don't consider myself to be a hero or an inspiration. I am just a person, trying his hardest to make it through the adversities of life and enjoy the ride at the same time. We all have our challenges, whether small or great to deal with. Mine may be larger than most, yet I don't think I would appreciate life so much if everything was rainbows and blue birds. There have to be thorns in life too.

As James Taylor sang, "The secret to life is enjoying the passage of time." As I get older, I realize the truth in this profound statement. Since we can not stop the inevitable passage of time, we should enjoy life to the best of our abilities. Each day I wake up, despite the hardships, is a celebration of life. You have to make the best of this short sojourn on Earth.

Next year at my forty-fifth birthday, I will be celebrating another victory over DMD and finding ways to enjoy life. I fight on in the memory of all those who have lost out to DMD, many of them far too young.

Where has my muse gone?

In January I wrote that I wanted to be more prolific in my blog writing. In 2011, I only wrote four blog posts. Since January I have written nothing on my blog. It is as if my writing muse has abandoned me. My urge to write is strong, yet when I go to write a blog post, the words don't come out. The blinking cursor is all that I see. It seems as if my creative well has run dry. This drought must end. The creative well has to flow again.

What is holding me back? I have searched my self, but no answers are forthcoming. It could be that the old nemesis, apathy has taken hold, or that I have nothing to say. It could even be a severe case of writer's block. But, whatever it is that is holding me back, I must push it out of the way and just write. Now, if I could just come up with something to write about.

I need ideas. Do any of you reading this have any suggestions? If so, I would appreciate your input. I hope this post is just the start of many more.

Happy New Year!

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

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

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

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.

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

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

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

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.