Saturday, July 10, 2010
Happy Birthday to Me!
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.
Sunday, June 27, 2010
Sting
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.
Monday, June 14, 2010
Kick for a Cure
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.
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.
Tuesday, May 11, 2010
Visit to Assemblyman Nathan Fletcher's Office
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.
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.
Tuesday, April 27, 2010
Visit to Assemblyman Martin Garrcks Office
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.
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.
Monday, March 15, 2010
Disability Advocacy
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.
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.
Thursday, December 24, 2009
Merry Christmas!
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.
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.
Saturday, December 05, 2009
Josh Winheld 1978-2009
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.
Friday, November 27, 2009
Thanksgiving
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.
Sunday, November 08, 2009
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