Friday, March 16, 2007
15 minutes of fame
Our friend Kevin alerted us to an article in today's Salon.com that mentioned this blog and our last post. If you are interested, click on the "The Stem Cell Blogs of China" link under "Links of interest" in the right hand column. We are very excited to see that there is growing interest in stem cell therapy in China, and we are honored that we can help put a more human face to this issue.
Thursday, March 15, 2007
It takes a village
The Chinese proverb says that a journey of a thousand miles begins with the first step. In our case, our trip to China started with the help of many individuals who either directly or indirectly steered and guided us to our present course. Lily’s Aunt Lucy researched tirelessly on alternative Chinese medical treatments and urged us to explore these possibilities. At the same time, the MJD family provided us with valuable information and updates about the disease and ground breaking studies. We want to thank Mike Fernandes, the pater familias of the Northern California Ataxia Support Group, and Deb Omictin for letting us know that we are not alone. Also, muito obrigado to Fernando Santos for moderating and overseeing the exchanges on the MJD online discussion board. Then there is Kim Poor whose trip and blog serve as the touchstone for those who follow ---- Kim, thank you! George (and his wife, Melissa) Arruda, who followed, are equally inspirational. In fact, it was George’s sister, Celia’s, eloquent remarks on Chinese stem cell therapy on the MJD discussion board that convinced us to go on this trip.
Much closer to home in the Bay Area, we would like to thank Ken and Veronica for helping us get in touch with Dr. Roger Kornberg and to Chris for the good health talisman. We are grateful for Jane Ellen's and Ivy's help in looking after the house while we are gone. Our plants get a mini vacation thanks to I-Ching and Baker. We'll also be thinking about (and thanking) Arianna every day during our trip for the profusion of vitamins that she has selected for us. Many thanks to Kevin, Michael, Ken, Kim, Rita, Pushpa and Jackie for having lunch with us this week, and also to our friends and family both near and far who sent us their good wishes.
We were treated to a fantastic sending off party last night at Jeanne and Randy's. We'd like to thank our wonderful hosts and hostesses, Jeanne & Randy, Cathy & Peter, and all of our friends, Ann & Peter, Julia & Bob, Pushpa & Sharad, Rita & Ramon, Kathy & Tony, Arianna & Bryan, Zann & Seana, Veronica & Ken, I-Ching & Baker, Sandy, Elizabeth, Kathleen and Jackie for their thoughtfulness and for reminding us of what we'll be missing while we're in China. Here are a few photos of last night's festivities.
Last but not least, we want to thank our daughter, Andrea, for being a crucial (and at times, quirky) part of our lives and for her scholarship that took the financial sting out of this trip.
Lily is reminded of the tale of a songbird that came down with a sore throat one day. His concerned friends dropped by the bird’s nest all throughout the day, offering their sympathy and homemade remedies. That night, the bird took every pill, drank every tonic, applied every ointment and wore every talisman given to him by his friends and the next morning, he was well again. Was it all the firepower of the medications that cured the bird? We ‘d like to think that the healing magic came instead from all the love that was imbued in the medicines. Thank you everyone, we couldn’t have done it without you!
T minus three and counting until liftoff. We’ll talk to you again from the far side of the moon on March 19.
Much closer to home in the Bay Area, we would like to thank Ken and Veronica for helping us get in touch with Dr. Roger Kornberg and to Chris for the good health talisman. We are grateful for Jane Ellen's and Ivy's help in looking after the house while we are gone. Our plants get a mini vacation thanks to I-Ching and Baker. We'll also be thinking about (and thanking) Arianna every day during our trip for the profusion of vitamins that she has selected for us. Many thanks to Kevin, Michael, Ken, Kim, Rita, Pushpa and Jackie for having lunch with us this week, and also to our friends and family both near and far who sent us their good wishes.
We were treated to a fantastic sending off party last night at Jeanne and Randy's. We'd like to thank our wonderful hosts and hostesses, Jeanne & Randy, Cathy & Peter, and all of our friends, Ann & Peter, Julia & Bob, Pushpa & Sharad, Rita & Ramon, Kathy & Tony, Arianna & Bryan, Zann & Seana, Veronica & Ken, I-Ching & Baker, Sandy, Elizabeth, Kathleen and Jackie for their thoughtfulness and for reminding us of what we'll be missing while we're in China. Here are a few photos of last night's festivities.
Last but not least, we want to thank our daughter, Andrea, for being a crucial (and at times, quirky) part of our lives and for her scholarship that took the financial sting out of this trip.
Lily is reminded of the tale of a songbird that came down with a sore throat one day. His concerned friends dropped by the bird’s nest all throughout the day, offering their sympathy and homemade remedies. That night, the bird took every pill, drank every tonic, applied every ointment and wore every talisman given to him by his friends and the next morning, he was well again. Was it all the firepower of the medications that cured the bird? We ‘d like to think that the healing magic came instead from all the love that was imbued in the medicines. Thank you everyone, we couldn’t have done it without you!
T minus three and counting until liftoff. We’ll talk to you again from the far side of the moon on March 19.
Sunday, March 11, 2007
My Medications and Goals
I'll touch on my current medications and what my goals are for any changes in medication as a result of this trip.
In the way of medications and supplements, thank god I do not experience any pain and have no need for painkillers. Instead, almost all of my medications are for symptomatic relief. Warning: this is not a recommendation for any particular medication. Your mileage may vary!
• Antioxidants - Idebenone, NAC, Vitamin E
• Omega-3 fish oil for energy
• Creatine for nerve health
• Fluoxetine for improvement of slurred speech symptoms
• Amantadine for improvement with ataxia symptoms
• Depakote to address night time tremors
What do I expect to change after Stem Cell Therapy in China? Actually hardly any change in medication is expected. To the extent possible, I intend to consume the same array of medications and supplements during my time in China so that any changes afterwards can logically be attributed to the stem cell treatment(s).
As stated in my second post, I will be looking for temporary improvements in upright standing/walking and reduced neuropathy around the feet. Who knows ... maybe I'll go on a follow-up visit to China in the future. Also, I've been told that the effects of the some of the medications on the aforementioned list will take a number of additional months before yielding results. In other words, none of them are expected to "kick in" while I'm in China.
In the way of medications and supplements, thank god I do not experience any pain and have no need for painkillers. Instead, almost all of my medications are for symptomatic relief. Warning: this is not a recommendation for any particular medication. Your mileage may vary!
• Antioxidants - Idebenone, NAC, Vitamin E
• Omega-3 fish oil for energy
• Creatine for nerve health
• Fluoxetine for improvement of slurred speech symptoms
• Amantadine for improvement with ataxia symptoms
• Depakote to address night time tremors
What do I expect to change after Stem Cell Therapy in China? Actually hardly any change in medication is expected. To the extent possible, I intend to consume the same array of medications and supplements during my time in China so that any changes afterwards can logically be attributed to the stem cell treatment(s).
As stated in my second post, I will be looking for temporary improvements in upright standing/walking and reduced neuropathy around the feet. Who knows ... maybe I'll go on a follow-up visit to China in the future. Also, I've been told that the effects of the some of the medications on the aforementioned list will take a number of additional months before yielding results. In other words, none of them are expected to "kick in" while I'm in China.
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