Like I mentioned, the PEG is usually outpatient work, but I'm going to be admitted for 3 days. We were just scheduled for Wednesday
Enjoy Memorial Day weekend, we will be with family and loved ones so I know I will!
Friday, May 27, 2011
My date with PEG (revised)
VA Healthcare is a supportive and efficient system in our experience to date. We are grateful to be so fortunate.
Like I mentioned, the PEG is usually outpatient work, but I'm going to be admitted for 3 days. We were just scheduled for WednesdayJune 1 June 8, for check-in. The procedure is on Thursday and I'm back home with the girls the next day.
Enjoy Memorial Day weekend, we will be with family and loved ones so I know I will!
Like I mentioned, the PEG is usually outpatient work, but I'm going to be admitted for 3 days. We were just scheduled for Wednesday
Enjoy Memorial Day weekend, we will be with family and loved ones so I know I will!
Thursday, May 26, 2011
Meet PEG
As I mentioned in my last post, I've been having some difficulties with choking lately. It is mostly when taking my copious supplements, often when drinking, and sometimes eating.
My diet consists mostly of rice, vegetables and protein all finely chopped. I generally don't have difficulty when eating these meals. It's other foods -- pizza, burgers, salads, etc that I struggle with. Two things at play here, my tongue does not have the strength to move a lot of food around in my mouth -- so food gets stuck to the roof and in the sides. The second is the interactions between the epiglottis and hyoid bone in the larynx region.
When I swallow the epiglottis does not completely close off the airway, so food and liquid can sneak into the lungs. My throat is also smaller, so when the food does go down the right way it can get stuck.
With Bulbar onset ALS (first symptoms are mouth and throat) the biggest risk to long term survival is pneumonia. There are several types, the one we are concerned with occurs when food and excess liquids end up in the lungs. The body knows how to deal with this generally, but excessive exposure can lead to lung dysfunction.
The solution is a PEG (Percutaneous Endoscopic Gastrostomy) more commonly known as the insertion of a feeding tube. I will be having this procedure done in the next few weeks. It is generally an outpatient procedure -- but I will spend a few days in the hospital as a precaution.
I watched a video on the procedure and care of the device. It is very straight forward and within a few months they will remove the tube and replace it with a port that promises to be unobtrusive.
I can still eat and drink after the procedure, but I will be able to take my supplements via this tube which will really minimize the effort, discomfort and risk that comes with trying to down my pile of pills. In addition to pills and water, food can be liquified and delivered via a small pump when desired.
This along with swallowing strategies like tilting my head forward will help me keep my weight and nutrition up.
My diet consists mostly of rice, vegetables and protein all finely chopped. I generally don't have difficulty when eating these meals. It's other foods -- pizza, burgers, salads, etc that I struggle with. Two things at play here, my tongue does not have the strength to move a lot of food around in my mouth -- so food gets stuck to the roof and in the sides. The second is the interactions between the epiglottis and hyoid bone in the larynx region.
When I swallow the epiglottis does not completely close off the airway, so food and liquid can sneak into the lungs. My throat is also smaller, so when the food does go down the right way it can get stuck.
With Bulbar onset ALS (first symptoms are mouth and throat) the biggest risk to long term survival is pneumonia. There are several types, the one we are concerned with occurs when food and excess liquids end up in the lungs. The body knows how to deal with this generally, but excessive exposure can lead to lung dysfunction.
The solution is a PEG (Percutaneous Endoscopic Gastrostomy) more commonly known as the insertion of a feeding tube. I will be having this procedure done in the next few weeks. It is generally an outpatient procedure -- but I will spend a few days in the hospital as a precaution.
I watched a video on the procedure and care of the device. It is very straight forward and within a few months they will remove the tube and replace it with a port that promises to be unobtrusive.
I can still eat and drink after the procedure, but I will be able to take my supplements via this tube which will really minimize the effort, discomfort and risk that comes with trying to down my pile of pills. In addition to pills and water, food can be liquified and delivered via a small pump when desired.
This along with swallowing strategies like tilting my head forward will help me keep my weight and nutrition up.
Tuesday, May 24, 2011
Gratitude and reality
The last few weeks I've been getting setup through the VA. They have a great team dedicated to spinal and brain patients and I've had meetings with physical, occupational and speech therapists. Any equipment I may need in the future as well as about half of my supplements are covered by the VA. The Paralyzed Veterans of America have been very helpful in getting me in the system -- a major difference from when I tried to visit the VA a year ago.
Our disability also transitioned from short-term to long-term. It was a few weeks of uncertainty when we found out that the insurance company had an open investigation into the possibility of a pre-existing condition in my case. We were quite happy last week when we found out the news that the investigation was closed and payments resumed.
I've also started to supplement my acupuncture treatments at Northeast Community Acupuncture. They have a sliding scale from $15-40 per treatment. I'm receiving work along the same points as in China. This is really helping out with both cost and convenience. I'm still seeing Donna Peterson @ New Medicine Acupuncture every other week while going to Northeast 3 times a week.
I'm also receiving bodywork from my wonderful wife, Margit -- as well as other practitioners 3-4 times per week.
We are very blessed and fortunate to receive so much support. We are strong in our resolve to do whatever it takes to fight the progression of the disease. My speech has not returned to the level it was when I left China, my upper body strength is quite reduced and I'm struggling with choking while I eat and drink. I also tire easily. But I am still mobile, I'm able to ride my bike and I'm mostly intelligible.
Our disability also transitioned from short-term to long-term. It was a few weeks of uncertainty when we found out that the insurance company had an open investigation into the possibility of a pre-existing condition in my case. We were quite happy last week when we found out the news that the investigation was closed and payments resumed.
I've also started to supplement my acupuncture treatments at Northeast Community Acupuncture. They have a sliding scale from $15-40 per treatment. I'm receiving work along the same points as in China. This is really helping out with both cost and convenience. I'm still seeing Donna Peterson @ New Medicine Acupuncture every other week while going to Northeast 3 times a week.
I'm also receiving bodywork from my wonderful wife, Margit -- as well as other practitioners 3-4 times per week.
We are very blessed and fortunate to receive so much support. We are strong in our resolve to do whatever it takes to fight the progression of the disease. My speech has not returned to the level it was when I left China, my upper body strength is quite reduced and I'm struggling with choking while I eat and drink. I also tire easily. But I am still mobile, I'm able to ride my bike and I'm mostly intelligible.
Thursday, April 21, 2011
Just For Today
It is my intention to heal.
I will be grateful and not angry,
be honest and not worry,
be compassionate to myself and to others.
Put the power of the universe here,
put life here.
The mind is calm,
the emotions are at peace.
I am remembering who I am,
I am one with God.
No past, no present, no future,
The life in me connects with the life in you.
Bless this day with Divine wisdom, power and love.
I will be grateful and not angry,
be honest and not worry,
be compassionate to myself and to others.
Put the power of the universe here,
put life here.
The mind is calm,
the emotions are at peace.
I am remembering who I am,
I am one with God.
No past, no present, no future,
The life in me connects with the life in you.
Bless this day with Divine wisdom, power and love.
Tuesday, April 12, 2011
4/12 Update
I will resume a more frequent update schedule going forward as I settle into a routine back home.
I am feeling stronger, on Sunday my speech was the best it's been in weeks. But as I learned in China, recovery comes in waves; I'm lower energy and speaking slower today.
I had some encouraging news yesterday. In a test that segregates fat from muscle loss, I've lost 7 pounds in the last 4 months, but only 2 of that is muscle. This is a great improvement over the trajectory I had been on for the last year.
Another set of metrics from this test measure cell health and the same pattern is emerging there as well.
Getting into a schedule, enjoying the warmth and regeneration that comes with spring. Still not much time on the computer, but doing more cooking and starting to reconnect with friends.
We have started looking for our next home. We want to get something with everything on the first floor and easy garage access. We've thrown a wide net around Minneapolis, even considering a duplex where we live on the first floor. We started a treasure map of the house, Grace is very excited about a dinning room where we can throw dinner parties.
I have my first VA appointment tomorrow. A year ago I was denied access, but with the ALS diagnosis from Head of Neurology at the U of M, and the prep work done by Paralyzed Veterans of America I expect this visit to be quite different.
I am feeling stronger, on Sunday my speech was the best it's been in weeks. But as I learned in China, recovery comes in waves; I'm lower energy and speaking slower today.
I had some encouraging news yesterday. In a test that segregates fat from muscle loss, I've lost 7 pounds in the last 4 months, but only 2 of that is muscle. This is a great improvement over the trajectory I had been on for the last year.
Another set of metrics from this test measure cell health and the same pattern is emerging there as well.
Getting into a schedule, enjoying the warmth and regeneration that comes with spring. Still not much time on the computer, but doing more cooking and starting to reconnect with friends.
We have started looking for our next home. We want to get something with everything on the first floor and easy garage access. We've thrown a wide net around Minneapolis, even considering a duplex where we live on the first floor. We started a treasure map of the house, Grace is very excited about a dinning room where we can throw dinner parties.
I have my first VA appointment tomorrow. A year ago I was denied access, but with the ALS diagnosis from Head of Neurology at the U of M, and the prep work done by Paralyzed Veterans of America I expect this visit to be quite different.
Tuesday, April 05, 2011
Home and Recovering
I've been back for just over two weeks. It has taken this long to reset my internal clock.
I'm finally sleeping through the night and starting to feel stronger. I've lost a decent bit of my ability to communicate easily. My speech has been very slurred and my voice weak. I've also had reduced function of my right hand and the left has started cramping.
I've been on a computer holiday and mostly resting -- giving my body time to recover. The last few days my speech is finally improving. Today, at my acupuncture appointment, as soon as the needles went in my speech got clearer. So it's just a matter of time and recovery.
Thank you for your correspondence, I receive so many blessings regularly. I wanted to share one I received today from a family we met last year on the playa:
***We send our utmost light and prayers to david on his healing journey...REGENERATION & SOFTENING are the keys to rebirthing those motor neurons....gentle nourishing is what the body/spirit needs...The journey may be hard at times but David will come out triumphant...he is a warrior of light!...all that is asked of him from his body is that he completely rebirths...i see this as a butterfly metaphor:
there once was a hungry caterpillar, and the caterpillar did nothing but think of it's survival...and survival was eating...and eating anything...maybe things that weren't healthy for it....and it's mind was focused on survival...
then the caterpillar felt an inner calling/instinct to create a hard shell around itself (the hardness can be compared to the sclerosis)..the cocoon is the healing journey (complete degeneration to regeneration)...inside this cocoon the caterpillar completely lost itself...it no longer was a caterpillar...it was yet to be re-created...
and from the cocoon slowly/frightenly emerges a butterfly...ready to fly off into the sky... sipping on nectars...the rawest and purest form of life....soar off butterfly!...spread your wings and fly!
Thank you Reba, Jorge, and Ama.
I'm finally sleeping through the night and starting to feel stronger. I've lost a decent bit of my ability to communicate easily. My speech has been very slurred and my voice weak. I've also had reduced function of my right hand and the left has started cramping.
I've been on a computer holiday and mostly resting -- giving my body time to recover. The last few days my speech is finally improving. Today, at my acupuncture appointment, as soon as the needles went in my speech got clearer. So it's just a matter of time and recovery.
Thank you for your correspondence, I receive so many blessings regularly. I wanted to share one I received today from a family we met last year on the playa:
***We send our utmost light and prayers to david on his healing journey...REGENERATION & SOFTENING are the keys to rebirthing those motor neurons....gentle nourishing is what the body/spirit needs...The journey may be hard at times but David will come out triumphant...he is a warrior of light!...all that is asked of him from his body is that he completely rebirths...i see this as a butterfly metaphor:
there once was a hungry caterpillar, and the caterpillar did nothing but think of it's survival...and survival was eating...and eating anything...maybe things that weren't healthy for it....and it's mind was focused on survival...
then the caterpillar felt an inner calling/instinct to create a hard shell around itself (the hardness can be compared to the sclerosis)..the cocoon is the healing journey (complete degeneration to regeneration)...inside this cocoon the caterpillar completely lost itself...it no longer was a caterpillar...it was yet to be re-created...
and from the cocoon slowly/frightenly emerges a butterfly...ready to fly off into the sky... sipping on nectars...the rawest and purest form of life....soar off butterfly!...spread your wings and fly!
Thank you Reba, Jorge, and Ama.
Tuesday, March 15, 2011
Possible last China post
Still having many issues with ATG (All Things Google), so I may not be
able to post again from China.
able to post again from China.
However, it is worth noting that I have tickets in hand that have me
arriving in MSP on Monday. As in NEXT Monday, March 21.
My acupuncture AND herb doctors are both taking well deserved vacation
starting the 20th, and instead of one week of new practitioners
getting to know my body and messing with well tuned herbs -- we talked
about it and agreed that I'm stable and time is right to go.
So, I'm going to leave here Saturday -- spend a few days in Shanghai
with Greg Sergi and fly out Monday morning arriving in MSP on Monday
morning. Longest morning of my life - no doubt, but full of
anticipation and excitement.
If I can tame blogger I may get one more post -- but if not, I'll
cover the Black Bone Chicken, Transportation and full Retrospective
once I'm on frozen 612 tundra.
Apologies in advance if this post is janky -- I'm posting via email.
My early return is a surprise for Grace (she has been asking for just
such a surprise) -- so keep it from small ears.
Can't wait to be home, I'm giddy like an 8 year old on Christmas Eve.
xxoo
dta
Thursday, March 10, 2011
And... we're back
First, dear reader, accept my apologies for being so late with a new post. There have been some technical difficulties (that still remain) with Google (search, email, chat, blogs) from China. I don't believe it is all China blocking Google, as my other work arounds don't seem to resolve the problems. I know Google has had some state-side issues as well in the last few weeks so I'm guessing it's a perfect storm of technical mayhem.
I have also increased exercise, research and social time. The end result is lack of updates here. Not to worry, all is well -- and I have a few posts waiting in the wings.
I purchased a 2nd hand bicycle and have had the chance to ride quite a bit while the weather has been nice. I've also been on a number of long walks back into the countryside which has been a serene experience.
Treatments are going well. My same acupuncturist, Tom, has worked on me for 70 days straight. No weekends, no holidays. He will be going on vacation later this month for a well deserved break. I know at least 3 other patients he works on. Each session takes about 10 minutes to put in the needles and then 30 minutes of sitting with a heat lamp, 5 minutes of removal and then 40 minutes of Twi-Na (medical massage) of my head, neck, shoulders, arms and hands.
Working with Dr Krystal we seemed to have dialed in the herb formula. I still have light muscle-jumping in my right shoulder, triceps and forearm but they are significantly reduced. The tongue and hand atrophy has stabilized -- my speech is still labored and typing with my right hand is a slow process, but no measurable loss in several months. All other symptoms are under control including excess saliva, tongue and cheek biting, dry mouth, choking as well as muscle cramping and heavy spasms. In addition I've not needed to use an inhaler once since I've been here -- even during moderate exercise.
I'm glad I stayed longer, it has given time for my situation to stabilize -- but I am ready to come home. I sure miss my wonderful wife and sweet daughter. I'm ready to howl with the bassets, too!
The construction around the hospital has picked up dramatically. It starts around 7am and can go as late as 2am. Dozens of excavators and dump trucks numbering in the 30's have completely removed 4 large hills and building is happening on all 3 sides. When I arrived the hospital was isolated, by summer's end it will be part of the city.
That is all for now -- just a quick catch-up. More posts on Black Bone Chicken and Transportation in the next few days.
I have also increased exercise, research and social time. The end result is lack of updates here. Not to worry, all is well -- and I have a few posts waiting in the wings.
I purchased a 2nd hand bicycle and have had the chance to ride quite a bit while the weather has been nice. I've also been on a number of long walks back into the countryside which has been a serene experience.
Treatments are going well. My same acupuncturist, Tom, has worked on me for 70 days straight. No weekends, no holidays. He will be going on vacation later this month for a well deserved break. I know at least 3 other patients he works on. Each session takes about 10 minutes to put in the needles and then 30 minutes of sitting with a heat lamp, 5 minutes of removal and then 40 minutes of Twi-Na (medical massage) of my head, neck, shoulders, arms and hands.
Working with Dr Krystal we seemed to have dialed in the herb formula. I still have light muscle-jumping in my right shoulder, triceps and forearm but they are significantly reduced. The tongue and hand atrophy has stabilized -- my speech is still labored and typing with my right hand is a slow process, but no measurable loss in several months. All other symptoms are under control including excess saliva, tongue and cheek biting, dry mouth, choking as well as muscle cramping and heavy spasms. In addition I've not needed to use an inhaler once since I've been here -- even during moderate exercise.
I'm glad I stayed longer, it has given time for my situation to stabilize -- but I am ready to come home. I sure miss my wonderful wife and sweet daughter. I'm ready to howl with the bassets, too!
The construction around the hospital has picked up dramatically. It starts around 7am and can go as late as 2am. Dozens of excavators and dump trucks numbering in the 30's have completely removed 4 large hills and building is happening on all 3 sides. When I arrived the hospital was isolated, by summer's end it will be part of the city.
That is all for now -- just a quick catch-up. More posts on Black Bone Chicken and Transportation in the next few days.
Monday, February 21, 2011
2/21
Mid February week in review
It's been a week since my last update, here are some of the highlights:
Valentines Day - flowers, chocolate and fire. Last weekend was Valentines Day, not really celebrated here in the East but certainly was back in the 612. Margit and Grace were showered with flowers and chocolate from many directions. Thanks to all of you who helped make that day special.
As I posted earlier, it wasn't all candy and roses. A friend's family burned down on Monday night. No one was harmed, but all possessions were lost. Thanks to those of you who offered support and prayers.
And again, I am grateful for the many that donated to offset the costs of me staying longer in China to continue treatments. We have once again raised enough money to cover the duration with some left over to continue treatments once I return home. Thank you all, again.
Another way we are receiving is in direct physical support. Our good friend Brian (aka Legend) has given LA notice and is moving to Minneapolis. He was considering this move anyway, but once he found out I was staying longer he offered to accelerate his plans in order to provide support to Margit and Grace. We are so thrilled that he is becoming a resident member of the 612.
So yeah, Wednesday came and went and I didn't. It was a tough day, my alarms went off reminding me a bout flights home, things got teary on the evening call. I miss my girls and they miss me. We all know the longer stay is for the best, but it is so difficult to be so long between a kiss from my sweet wife and holding my precious daughter in my arms.
Wednesday evening I went to work out and pushed too hard. I ride a stationary bike for 20 minutes to reach a sustained heart-rate of 90+bpm. It is important to get the heart rate up so that the ATP production is maximized (more on that in a future post). I was probably closer to 105, and when I finished I did some more exercise on the elliptical. Bad move, it knocked me out for a few days. Spent all of Thursday and a good part of Friday resting and feeling very week. Working out good, pushing too hard not good. My body does not currently recover like a 45 year old, more like I'm 65. Lesson? Feel more, push less.
There have been a few patients here at the hospital from Bahrain, one is still here. It has been interesting getting their perspective on what is happening there. It is a Democratic Republic with a Royal family (like the UK), but the Prime Minister and his relations have been in power for over 30 years. A small island of a country, but strategically significant because US Naval 5th Fleet is stationed there, just a few kilometers from Saudi Arabia and just across the sea from Iran. As a result the US response has been measured -- which is frustrating to the people of the country that want fair representation and feel that International pressure, and specifically from the US could make the difference.
I met w/ Dr Ming on Saturday to talk about the duration of my stay, March 30 is the new departure date. He offered to help extend my visa past that, but 3 months is the most I'm willing to stay away from Margit and Grace. I do feel like staying on longer will help me to stabilize my improved condition, but there is a point of diminishing returns and given that I'm stronger and my symptoms are fewer -- I see myself home by April 1.
We also talked about his interest in starting a Red Cross Hospital in the US where he would send his knowledgeable staff to extend the work being done here. He is working with the Red Cross Humanity Project to do just such a thing, as well as provide free or discounted treatments to those who cannot afford it. More on that as it unfolds -- but it was a very encouraging conversation.
That's all for now. Still working on the super-secret project. With the change in departure I have a little more time to get it ready for prime-time, but I hope to have more information to you shortly.
Thanks again for the love and support; the donations, the prayers, the emails, the care packages for Margit and Grace -- they are all received as they are intended and we are very grateful.
dta
It's been a week since my last update, here are some of the highlights:
Valentines Day - flowers, chocolate and fire. Last weekend was Valentines Day, not really celebrated here in the East but certainly was back in the 612. Margit and Grace were showered with flowers and chocolate from many directions. Thanks to all of you who helped make that day special.
As I posted earlier, it wasn't all candy and roses. A friend's family burned down on Monday night. No one was harmed, but all possessions were lost. Thanks to those of you who offered support and prayers.
And again, I am grateful for the many that donated to offset the costs of me staying longer in China to continue treatments. We have once again raised enough money to cover the duration with some left over to continue treatments once I return home. Thank you all, again.
Another way we are receiving is in direct physical support. Our good friend Brian (aka Legend) has given LA notice and is moving to Minneapolis. He was considering this move anyway, but once he found out I was staying longer he offered to accelerate his plans in order to provide support to Margit and Grace. We are so thrilled that he is becoming a resident member of the 612.
So yeah, Wednesday came and went and I didn't. It was a tough day, my alarms went off reminding me a bout flights home, things got teary on the evening call. I miss my girls and they miss me. We all know the longer stay is for the best, but it is so difficult to be so long between a kiss from my sweet wife and holding my precious daughter in my arms.
Wednesday evening I went to work out and pushed too hard. I ride a stationary bike for 20 minutes to reach a sustained heart-rate of 90+bpm. It is important to get the heart rate up so that the ATP production is maximized (more on that in a future post). I was probably closer to 105, and when I finished I did some more exercise on the elliptical. Bad move, it knocked me out for a few days. Spent all of Thursday and a good part of Friday resting and feeling very week. Working out good, pushing too hard not good. My body does not currently recover like a 45 year old, more like I'm 65. Lesson? Feel more, push less.
There have been a few patients here at the hospital from Bahrain, one is still here. It has been interesting getting their perspective on what is happening there. It is a Democratic Republic with a Royal family (like the UK), but the Prime Minister and his relations have been in power for over 30 years. A small island of a country, but strategically significant because US Naval 5th Fleet is stationed there, just a few kilometers from Saudi Arabia and just across the sea from Iran. As a result the US response has been measured -- which is frustrating to the people of the country that want fair representation and feel that International pressure, and specifically from the US could make the difference.
I met w/ Dr Ming on Saturday to talk about the duration of my stay, March 30 is the new departure date. He offered to help extend my visa past that, but 3 months is the most I'm willing to stay away from Margit and Grace. I do feel like staying on longer will help me to stabilize my improved condition, but there is a point of diminishing returns and given that I'm stronger and my symptoms are fewer -- I see myself home by April 1.
We also talked about his interest in starting a Red Cross Hospital in the US where he would send his knowledgeable staff to extend the work being done here. He is working with the Red Cross Humanity Project to do just such a thing, as well as provide free or discounted treatments to those who cannot afford it. More on that as it unfolds -- but it was a very encouraging conversation.
That's all for now. Still working on the super-secret project. With the change in departure I have a little more time to get it ready for prime-time, but I hope to have more information to you shortly.
Thanks again for the love and support; the donations, the prayers, the emails, the care packages for Margit and Grace -- they are all received as they are intended and we are very grateful.
dta
Wednesday, February 16, 2011
Family of a friend lost their house in a fire
He is working on a website to provide details and support information. In the meantime please add Kathy and John to your prayers.
Here are the posts from Dan's Facebook account:
I've just confirmed that my mom can take PayPal donations at kathyolesen@whitepinestudio.com. Again, they've lost everything they own in a house fire Monday morning, so anything would be appreciated. Also, if you can get this message out, I'd appreciate it. Tiny website with the whole story coming soon.
If you want to help John and Kathy and you don't have PayPal, you can send personal checks and well-concealed cash to:
P.O. Box 26
Vining, MN, 56588-0026
You can find the latest information and support options here:
http://almorafire.org/
Thank you,
dta
Friday, February 11, 2011
Tough Choices
I'm scheduled to leave in 5 days.
However, I've decided to stay longer. This is a tough choice, I really miss Margit and sweet Gracie, my own bed, my good friends, the bitter cold... well maybe not so much the cold.
A few nights ago I had 3 vivid dreams that were related with the message "pay attention, you are missing something". I'm not usually a big dream interpretation guy -- I'm lucky if I can remember any of them, let alone 3 from the same night. So, that alone was intriguing. When I woke up, all 3 dreams came flooding to my consciousness along with the thought: I need to stay longer. So I've spent the last few days seriously considering it. Talked to Margit, talked to my support group back home (including my MN TCM doctor) and talked with a few patients here.
Today my Doctor returned from Spring Festival / New Year's vacation. She was concerned with some regression of the progress we had been making before she left. I've had some difficulty swallowing, some issues with dry mouth, more fasciculations and even some cramping. Also, a grip test of my right hand showed a 10% decrease in strength, after seeing an 18% increase just a few weeks ago. All of these symptoms have been well under control for the last month -- but I've slipped a bit.
This is not uncommon, there tends to be a 3 steps forward, 2 steps back effect that can happen with concentrated treatments. As the body adjusts, much like eyes in a newly lit room, things normalize.
My Doctor was concerned that I would be leaving in under a week, so we started to talk about how much longer she thought I should stay. 4-6 weeks longer seems to be the consensus. This isn't a huge surprise. Before I came I was told to plan on 3 months. Now it looks like that will be the duration.
I could leave now, most of the symptoms are back in check. But given the dreams, the Doctor's advice and my desire to catch as much traction as possible on these treatments -- I've decided to stay.
I had the tough conversation with Grace this morning. She was very sad and it was a difficult time. But she is strong and brave and she knows her daddy loves and misses her dearly.
I've restored the donate button to the blog. Please do not feel obligated, but if you are called -- financial support is welcome. Your prayers and sweetness to my wife and daughter are also much appreciated.
With much love and gratitude,
dta
However, I've decided to stay longer. This is a tough choice, I really miss Margit and sweet Gracie, my own bed, my good friends, the bitter cold... well maybe not so much the cold.
A few nights ago I had 3 vivid dreams that were related with the message "pay attention, you are missing something". I'm not usually a big dream interpretation guy -- I'm lucky if I can remember any of them, let alone 3 from the same night. So, that alone was intriguing. When I woke up, all 3 dreams came flooding to my consciousness along with the thought: I need to stay longer. So I've spent the last few days seriously considering it. Talked to Margit, talked to my support group back home (including my MN TCM doctor) and talked with a few patients here.
Today my Doctor returned from Spring Festival / New Year's vacation. She was concerned with some regression of the progress we had been making before she left. I've had some difficulty swallowing, some issues with dry mouth, more fasciculations and even some cramping. Also, a grip test of my right hand showed a 10% decrease in strength, after seeing an 18% increase just a few weeks ago. All of these symptoms have been well under control for the last month -- but I've slipped a bit.
This is not uncommon, there tends to be a 3 steps forward, 2 steps back effect that can happen with concentrated treatments. As the body adjusts, much like eyes in a newly lit room, things normalize.
My Doctor was concerned that I would be leaving in under a week, so we started to talk about how much longer she thought I should stay. 4-6 weeks longer seems to be the consensus. This isn't a huge surprise. Before I came I was told to plan on 3 months. Now it looks like that will be the duration.
I could leave now, most of the symptoms are back in check. But given the dreams, the Doctor's advice and my desire to catch as much traction as possible on these treatments -- I've decided to stay.
I had the tough conversation with Grace this morning. She was very sad and it was a difficult time. But she is strong and brave and she knows her daddy loves and misses her dearly.
I've restored the donate button to the blog. Please do not feel obligated, but if you are called -- financial support is welcome. Your prayers and sweetness to my wife and daughter are also much appreciated.
With much love and gratitude,
dta
Saturday, February 05, 2011
A trip to the other market
There are supermarkets, and that is where most of us buy our food. However, there are also the open air markets.
There are meal vendors scattered throughout the markets. You simply point to what you want and they cook it right there on the spot.
Then there are animal vendors. [warning: These pictures start fairly benign but they get a little shocking for the uninitiated. No dogs or cats shown, but they were there.]
More pheasant
Rodent...
This is a beaver.
Not sure what the name of this animal is, but it is common.
Boar
Ram?
As fresh as it gets. There is a woman who will slaughter for you and another man who will burn the carcass clean if you don't want to deal with the feathers.
Cow or Pig heart
Noodles by the basket full!
This is the Chinese cabbage I mentioned before, very tasty.
Ending on a high note - breads and sweets.
Then there are animal vendors. [warning: These pictures start fairly benign but they get a little shocking for the uninitiated. No dogs or cats shown, but they were there.]
Friday, February 04, 2011
Food, glorious food!
My journey with food here in China has been an adventure unto itself.
There are always plenty of fresh fruits and vegetables, and all manner of dumplings (which unfortunately because of my gluten-free diet I've had to bypass).
Meat is probably the most interesting experience. Beef is a bit of a luxury, at least in the interior. Lots of chicken and pork (pork is not recommended for ALS) and seafood. And then there are the other meats. Some wild game and some -- we in the west would generally consider more as pets.
Starting with my first meal when I arrived at the hospital:
Sliced chicken with celery, Chinese cabbage (kind of a cross between cabbage and iceberg lettuce) and the ever-present bowl of rice. The cost was roughly $10.
During the first week I mostly ate food prepared by the hospital. It was all tasty, a little heavy on the oils -- but I'm afraid some of the sauces were not compatible with my no MSG diet.
Mandarin fish with brown sauce, eggplant, rice ~ $12
Mutton Hot Pot, rice ~ $15
Stewed whole chicken, rice ~ $12
When they say whole chicken they mean beak to feet. The innards are there too -- first time I remember eating heart and gizzard, which was pretty good. But as soon as I bit into the liver I was done. Never could handle the texture/taste of chicken liver. Goose and duck liver, them's another bird altogether…
We did eat a few times at a restaurant that was in the Better Life Mall (where the supermarket was located). This was a spicy seafood dish.
Didn't order this, but again -- very common to see the *whole* chicken.
Next up, food from the supermarket.
Don't have room for the whole bird, how about just feet?
Lots of dried foods. These birds look like they didn't eat much wheat:
Pig snout and hooves:
Dried fish:
I've had the chance to practice lots of cooking during my stay here. Because the kitchen only has 4 burners and limited counter space and is used by most everyone, I've learned to do the prep work ahead of time in my room.
I cook my meals in a wok, except for the rice which takes about 15 minutes in a saucepan. 1 part rice, 2 parts water - bring to a boil, remove from heat.
Almost every dish I prepare starts with fresh garlic, ginger and onions sauteed in olive oil and some water. Then I add carrots, celery, potatoes, peppers and more water. Once the "hard" veggies are steamed I push them up the side of the wok and cook the sliced meat (chicken, beef or lamb) in the middle with more olive oil. Once the meat is done I add Chinese cabbage, and lots of cilantro and parsley mixed with a dash of salt and turmeric. Sometimes I add beans or dal (or substitute for meat).
A few of my finished creations:
No spices other than salt and turmeric. The ginger, garlic, onions, cilantro and parsley fill out the tastes quite well.
My meals are some variation of this 5-6 days a week. Occasionally I'll order something from the kitchen or eat out. But so far I've not been bored with this food -- and I've really enjoyed learning to cook for myself.
Now I have to go eat!
There are always plenty of fresh fruits and vegetables, and all manner of dumplings (which unfortunately because of my gluten-free diet I've had to bypass).
Meat is probably the most interesting experience. Beef is a bit of a luxury, at least in the interior. Lots of chicken and pork (pork is not recommended for ALS) and seafood. And then there are the other meats. Some wild game and some -- we in the west would generally consider more as pets.
Starting with my first meal when I arrived at the hospital:
During the first week I mostly ate food prepared by the hospital. It was all tasty, a little heavy on the oils -- but I'm afraid some of the sauces were not compatible with my no MSG diet.
When they say whole chicken they mean beak to feet. The innards are there too -- first time I remember eating heart and gizzard, which was pretty good. But as soon as I bit into the liver I was done. Never could handle the texture/taste of chicken liver. Goose and duck liver, them's another bird altogether…
Next up, food from the supermarket.
Lots of dried foods. These birds look like they didn't eat much wheat:
Pig snout and hooves:
Dried fish:
I've had the chance to practice lots of cooking during my stay here. Because the kitchen only has 4 burners and limited counter space and is used by most everyone, I've learned to do the prep work ahead of time in my room.
I cook my meals in a wok, except for the rice which takes about 15 minutes in a saucepan. 1 part rice, 2 parts water - bring to a boil, remove from heat.
Almost every dish I prepare starts with fresh garlic, ginger and onions sauteed in olive oil and some water. Then I add carrots, celery, potatoes, peppers and more water. Once the "hard" veggies are steamed I push them up the side of the wok and cook the sliced meat (chicken, beef or lamb) in the middle with more olive oil. Once the meat is done I add Chinese cabbage, and lots of cilantro and parsley mixed with a dash of salt and turmeric. Sometimes I add beans or dal (or substitute for meat).
A few of my finished creations:
No spices other than salt and turmeric. The ginger, garlic, onions, cilantro and parsley fill out the tastes quite well.
My meals are some variation of this 5-6 days a week. Occasionally I'll order something from the kitchen or eat out. But so far I've not been bored with this food -- and I've really enjoyed learning to cook for myself.
Now I have to go eat!
Tuesday, February 01, 2011
Happy New Year!
The Chinese New Year celebration has begun in earnest. Although the official date this year is February 3rd, the staff here at the hospital is down to a skeleton crew. The halls are all decorated and fireworks are going throughout the day and night.
The Chinese New Year is the biggest celebration of the year here. Think Christmas, New Years and 4th of July all at once but over a two week period. It lasts 15 days -- and is the point at which the Chinese Zodiac changes. We are moving into the year of the Rabbit. Obviously viewed as a very lucky time. Even the weather here is cooperating. The last several weeks have been cold (mid-20s) and overcast with mixed snow and rain. Today the temp got to 50 and it was sunny -- I went out for a two hour walk, it was quite lovely. The weather for the rest of the week gets warmer each day by 5 degrees until we hit 70 on Sunday! Really looking forward to soaking up a lot of sun and spring air.
Tomorrow the hospital is serving us all lunch up on the top floor. I've decided to wait on the food post until after tomorrow. I'm sure there will be many interesting items to sample.
Feeling pretty good. Was on the edge of a cold for about 3 days, spent a lot of time just resting in the room and watching some of the movies I brought with me. Watching The Wire again, such a great show. The writer, David Simon has had a new project going on New Orleans. Looking forward to that as well. This man was a Baltimore Sun news reporter for several years and really knows how to tell a story from several angles.
Have also been reading up on some of the interesting theories being forwarded by the PALS community over at the ALS.NET forums. The forums are part of the ALS TDI group, *the* cutting edge research lab on ALS. The research being done there is centered around utilizing the recently developed mouse model for familial and sporadic ALS to test already available drugs and measure their effectiveness in slowing symptoms.
But it's the forums where people living with and fighting ALS are watching closely and doing amazing parallel research. There are several members who are highly skilled biologists and brain chemistry wizards who are keeping the folks at TDI on their toes and pushing the research envelope. If you or someone you know is dealing with ALS it is a great resource. Lots of sharing of information on individuals use of supplements and off-label drug therapies. It reminds of me of the long hours spent on Compuserve back in the day when I was first learning programming. I'm not able to contribute yet, but I'm reading and learning as fast as I can.
I also came across a patent that was filled and awarded for a TCM concoction developed for ALS called BuNaoGao. Its results have recently been released as a 5 year peer reviewed study. The patent can be found via Google patent search and all of the herbs and amounts are listed. Between that and the herbs used here at this hospital I feel confident that I now have the best data on what is most effective from a TCM approach.
The next step is to combine that information with what is available at the ALS TDI forums and find the best combination of east and west. I plan to share that research as part of a soon to be announced but currently super secret project. :)
Another week or so of teasing and I'll let you in on all of it.
-dta
The Chinese New Year is the biggest celebration of the year here. Think Christmas, New Years and 4th of July all at once but over a two week period. It lasts 15 days -- and is the point at which the Chinese Zodiac changes. We are moving into the year of the Rabbit. Obviously viewed as a very lucky time. Even the weather here is cooperating. The last several weeks have been cold (mid-20s) and overcast with mixed snow and rain. Today the temp got to 50 and it was sunny -- I went out for a two hour walk, it was quite lovely. The weather for the rest of the week gets warmer each day by 5 degrees until we hit 70 on Sunday! Really looking forward to soaking up a lot of sun and spring air.
Tomorrow the hospital is serving us all lunch up on the top floor. I've decided to wait on the food post until after tomorrow. I'm sure there will be many interesting items to sample.
Feeling pretty good. Was on the edge of a cold for about 3 days, spent a lot of time just resting in the room and watching some of the movies I brought with me. Watching The Wire again, such a great show. The writer, David Simon has had a new project going on New Orleans. Looking forward to that as well. This man was a Baltimore Sun news reporter for several years and really knows how to tell a story from several angles.
Have also been reading up on some of the interesting theories being forwarded by the PALS community over at the ALS.NET forums. The forums are part of the ALS TDI group, *the* cutting edge research lab on ALS. The research being done there is centered around utilizing the recently developed mouse model for familial and sporadic ALS to test already available drugs and measure their effectiveness in slowing symptoms.
But it's the forums where people living with and fighting ALS are watching closely and doing amazing parallel research. There are several members who are highly skilled biologists and brain chemistry wizards who are keeping the folks at TDI on their toes and pushing the research envelope. If you or someone you know is dealing with ALS it is a great resource. Lots of sharing of information on individuals use of supplements and off-label drug therapies. It reminds of me of the long hours spent on Compuserve back in the day when I was first learning programming. I'm not able to contribute yet, but I'm reading and learning as fast as I can.
I also came across a patent that was filled and awarded for a TCM concoction developed for ALS called BuNaoGao. Its results have recently been released as a 5 year peer reviewed study. The patent can be found via Google patent search and all of the herbs and amounts are listed. Between that and the herbs used here at this hospital I feel confident that I now have the best data on what is most effective from a TCM approach.
The next step is to combine that information with what is available at the ALS TDI forums and find the best combination of east and west. I plan to share that research as part of a soon to be announced but currently super secret project. :)
Another week or so of teasing and I'll let you in on all of it.
-dta
Friday, January 28, 2011
Thousands of words
I've updated to the latest post editor on Blogger and now I can upload photos through the proxy!
First up, I thought I'd share some pics of the acupuncture I've been receiving.
Under the chin at 1" depth:
5 needles threaded across the top of the scalp, making a cross centered on the head, these needles also go in about an inch:
On the neck there are 3 down the right side, one in the center and 1 to 2 on the left. These are also fairly shallow. At the top of my spine is a major point for ALS patients. The needle is very long and goes in about 3 inches:
On my left you'll see the points across the lower part of my skull usually 5 just about an inch above the hairline. These go in about a half an inch:
The needles in the right hand make it hard to move my hand and fingers. You'll notice the needles are in all the way to the bottom of the grip about 3" deep.
None of these pictured really hurt -- at least not as bad as you'd think ;). Many times I can just feel the pressure of the needle as it comes up against bone or membrane. Rarely is there a cross with a nerve -- occasionally there is a sting when it first breaks the skin, but that's maybe one or two per treatment.
Not pictured:
1 in the right shoulder
1 in the right bicep
2 just on the surface of the right forearm
1 between the big and 2nd toe on the right foot
1 about an inch below and behind the center of the right ankle
1 on each side behind the ear lobe
Alternating jaw in front of the ear. This is the one I mentioned before where he twists and pounds the needle once it's in. (This one *does* hurt -- every blessed time.)
Then there is the tongue, lots of light jabs then two pokes on top and one stick under the tongue.
Time to go make dinner, next time I'll share some interesting pictures of the food.
First up, I thought I'd share some pics of the acupuncture I've been receiving.
Under the chin at 1" depth:
5 needles threaded across the top of the scalp, making a cross centered on the head, these needles also go in about an inch:
On the neck there are 3 down the right side, one in the center and 1 to 2 on the left. These are also fairly shallow. At the top of my spine is a major point for ALS patients. The needle is very long and goes in about 3 inches:
On my left you'll see the points across the lower part of my skull usually 5 just about an inch above the hairline. These go in about a half an inch:
The needles in the right hand make it hard to move my hand and fingers. You'll notice the needles are in all the way to the bottom of the grip about 3" deep.
None of these pictured really hurt -- at least not as bad as you'd think ;). Many times I can just feel the pressure of the needle as it comes up against bone or membrane. Rarely is there a cross with a nerve -- occasionally there is a sting when it first breaks the skin, but that's maybe one or two per treatment.
Not pictured:
1 in the right shoulder
1 in the right bicep
2 just on the surface of the right forearm
1 between the big and 2nd toe on the right foot
1 about an inch below and behind the center of the right ankle
1 on each side behind the ear lobe
Alternating jaw in front of the ear. This is the one I mentioned before where he twists and pounds the needle once it's in. (This one *does* hurt -- every blessed time.)
Then there is the tongue, lots of light jabs then two pokes on top and one stick under the tongue.
Time to go make dinner, next time I'll share some interesting pictures of the food.
Wednesday, January 26, 2011
20 down, 20 to go
Apologies for lack of posts in the last week. I've been mostly working on a super-secret project that I'm very excited about (more about that in a bit). I also finally received my care package on Sunday -- which contained many items that have also kept me busy. I started to work on a post yesterday but developed a nasty headache before lunch that hung on until 1am.
I believe I experienced my first 'Herx" reaction. Named after Karl Herxheimers, the Dr that observed patients reactions when excess toxins are released faster than the body can remove them. My care package included all of my supplements -- which I have not been taking for over 2 weeks. Some of the supplements serve as natural antibiotics which kill bacteria that may be part of what started my symptoms. I didn't realize it yesterday -- I just felt like crap and tried to deal with the headache and eye pain as best I could. But this morning when I woke up I had a strong toxic smell (I had showered the night before) and my urine was very dark. But I felt much better, more so than I had for the last week or so. I'm gonna say this was a good thing.
As to what the bacteria may be is a larger question. I have tested positive for Borreliosis, the bacteria that is linked to Lyme disease. There are estimates that over 80% of those diagnosed with ALS are carrying the Borreliosis bacteria. My plan after returning to the states is to pursue a course of treatment to specifically target the bug, but as I mentioned some of the supplements I'm on are already starting to have an impact.
It's good to be here receiving TCM treatments, part of the daily routine includes pulse and tongue diagnosis. So if I am having a toxin overload it can be dealt with immediately. When I talked to the Dr about it this morning she said we'd give it another 2 days. If I have another similar experience she'll change the herb formula. But she agreed it was a good sign that I was detoxing.
David and Paula left yesterday, the only other Americans. It was hard to see them go, we had become fast friends and they were very helpful. Unfortunately David left in worse condition than he had arrived. When he came in early December he was able to walk with a cane, when he left he was moving slowly with a walker.
The last 2 weeks were particularly hard on him. The power and water issues, as well as the elevator being out of order for a week and all of the construction noise really caused him a lot of stress. I hope he is able to find a path to wellness once he is back home.
However, another patient has had some recent success. When she arrived she was using a walker -- and now just over 3 weeks later she is getting around without any assistance at all! We are all very encouraged by this. Hans and I were talking tonight and shared that we are both talking a little better as well.
That has been an unexpected joy of being here. The community shares the ups and downs together. We are all experiencing our connectedness as we share the joys and pains of healing our bodies, minds and spirits.
Going to wrap up -- I need to get a bit more work done on the super-secret project before I head to bed. I promise to tease you more over the coming days...
Much love and gratitude.
-dta
I believe I experienced my first 'Herx" reaction. Named after Karl Herxheimers, the Dr that observed patients reactions when excess toxins are released faster than the body can remove them. My care package included all of my supplements -- which I have not been taking for over 2 weeks. Some of the supplements serve as natural antibiotics which kill bacteria that may be part of what started my symptoms. I didn't realize it yesterday -- I just felt like crap and tried to deal with the headache and eye pain as best I could. But this morning when I woke up I had a strong toxic smell (I had showered the night before) and my urine was very dark. But I felt much better, more so than I had for the last week or so. I'm gonna say this was a good thing.
As to what the bacteria may be is a larger question. I have tested positive for Borreliosis, the bacteria that is linked to Lyme disease. There are estimates that over 80% of those diagnosed with ALS are carrying the Borreliosis bacteria. My plan after returning to the states is to pursue a course of treatment to specifically target the bug, but as I mentioned some of the supplements I'm on are already starting to have an impact.
It's good to be here receiving TCM treatments, part of the daily routine includes pulse and tongue diagnosis. So if I am having a toxin overload it can be dealt with immediately. When I talked to the Dr about it this morning she said we'd give it another 2 days. If I have another similar experience she'll change the herb formula. But she agreed it was a good sign that I was detoxing.
David and Paula left yesterday, the only other Americans. It was hard to see them go, we had become fast friends and they were very helpful. Unfortunately David left in worse condition than he had arrived. When he came in early December he was able to walk with a cane, when he left he was moving slowly with a walker.
The last 2 weeks were particularly hard on him. The power and water issues, as well as the elevator being out of order for a week and all of the construction noise really caused him a lot of stress. I hope he is able to find a path to wellness once he is back home.
However, another patient has had some recent success. When she arrived she was using a walker -- and now just over 3 weeks later she is getting around without any assistance at all! We are all very encouraged by this. Hans and I were talking tonight and shared that we are both talking a little better as well.
That has been an unexpected joy of being here. The community shares the ups and downs together. We are all experiencing our connectedness as we share the joys and pains of healing our bodies, minds and spirits.
Going to wrap up -- I need to get a bit more work done on the super-secret project before I head to bed. I promise to tease you more over the coming days...
Much love and gratitude.
-dta
Friday, January 21, 2011
Keep it positive
keep it positive positive positive positive positive
keep it positive positive positive positive positive
keep it positive positive positive positive positive
keep a positive charge a positive charge
beauty inspiration melodic music
massaging my foreverness consciousness
joy expanding uncaused always has been at large
bigger than mountains or even waterfall
of all you all given the positive charge
continuous gorgeous happiness sunrises
smiles on my heartbeat
excitement invigorating my awaiting
of more beauty more awe inspiring diary
of this life that I'm co-creating for the harmony of all beings
courage strength health trust truth compassion
over-standing of crystal clear perception
euphoria and laughter is what we're all after
manifesting with each thought appropriate
I am superman the almighty I can
living up to God to show my enthusiasm
orgasms of appreciation for each breath
of the cosmic continuous conduit of celebration
we are alive right now charged with positive electrons
nurturing our love songs in a lullaby that makes God cry
sweetness contentment all our needs are met
every positive thought will manifest
I have a heart so large with such a strong charge
I can land spaceships and make them ask for directions
the possibilities are endless of this miracle that we're living
its the reason we wake up every morning
singing to create something more beautiful then the day before
more inspiring with every choice giving the positive flex is a must
constant for everyone expanding
every intention is on the horizon
I am the manifestation of my highest intentions
keeping the positive continuous
love light trust acceptance positive discernment
music poetry and language
contagious bliss acknowledgment
the universe is granting every wish
so keep it positive, positive, positive, positive, positive
keep a positive charge positive charge
keep it positive positive positive positive positive
keep it positive positive positive positive positive
keep it positive positive positive positive positive
keep a positive charge a positive charge
magnetizing all the goodness
multiplying all the happiness
charging life with appreciation
acknowledging every blessing
giving thanks for this experience
and help charging it with best intentions
it's time to become angels
thinking every thought with crystal clear awareness
and watching it manifest at large
feel God laugh aloud
and scream your love to the cosmic beloved
for this is the life we are all creating
keep it positive positive positive positive positive
keep it positive positive positive positive positive
keep it positive positive positive positive positive
keep a positive charge a positive charge
-Chances R Good
keep it positive positive positive positive positive
keep it positive positive positive positive positive
keep a positive charge a positive charge
beauty inspiration melodic music
massaging my foreverness consciousness
joy expanding uncaused always has been at large
bigger than mountains or even waterfall
of all you all given the positive charge
continuous gorgeous happiness sunrises
smiles on my heartbeat
excitement invigorating my awaiting
of more beauty more awe inspiring diary
of this life that I'm co-creating for the harmony of all beings
courage strength health trust truth compassion
over-standing of crystal clear perception
euphoria and laughter is what we're all after
manifesting with each thought appropriate
I am superman the almighty I can
living up to God to show my enthusiasm
orgasms of appreciation for each breath
of the cosmic continuous conduit of celebration
we are alive right now charged with positive electrons
nurturing our love songs in a lullaby that makes God cry
sweetness contentment all our needs are met
every positive thought will manifest
I have a heart so large with such a strong charge
I can land spaceships and make them ask for directions
the possibilities are endless of this miracle that we're living
its the reason we wake up every morning
singing to create something more beautiful then the day before
more inspiring with every choice giving the positive flex is a must
constant for everyone expanding
every intention is on the horizon
I am the manifestation of my highest intentions
keeping the positive continuous
love light trust acceptance positive discernment
music poetry and language
contagious bliss acknowledgment
the universe is granting every wish
so keep it positive, positive, positive, positive, positive
keep a positive charge positive charge
keep it positive positive positive positive positive
keep it positive positive positive positive positive
keep it positive positive positive positive positive
keep a positive charge a positive charge
magnetizing all the goodness
multiplying all the happiness
charging life with appreciation
acknowledging every blessing
giving thanks for this experience
and help charging it with best intentions
it's time to become angels
thinking every thought with crystal clear awareness
and watching it manifest at large
feel God laugh aloud
and scream your love to the cosmic beloved
for this is the life we are all creating
keep it positive positive positive positive positive
keep it positive positive positive positive positive
keep it positive positive positive positive positive
keep a positive charge a positive charge
-Chances R Good
Thursday, January 20, 2011
1/3rd down
It took a few days to recover from back to back trips into town as well as a few nights rough sleep aided by outboard heater units that apparently weren't designed to work covered in ice.
It's been snowing steadily for 4 days. For my Minneapolis peeps that seems like not such a big deal but it's like saying it has been snowing for 4 days in Seattle. They are neither accustom or equipped for it. Traffic (which in a normal state is complete chaos) is an e-ticket ride. No plows to speak of, and they are using spades to shovel the walks.
It's been a good time to rest and be lazy in the room. Actually fired up the TV for the first time. 30 channels of pure Chinese culture and language and one channel of state run English speaking news. Kind of a mix between CNN and BBC. Not sure how obvious it is in the states, but Chinese President Hu Jintao is visiting President Obama -- the commentary news is interesting from here. Apparently America should stop trying to "surround" China through it's allied relations with Japan, Korea and Russia and we really need to open up our markets to more Chinese exports -- as well as start selling the Blackhawk helicopter to demonstrate our true commitment to Sino partnership. We also need to stop harping on the human rights issues.
Didn't need more than about an hour of that propaganda.
I also watched a few of the movies I brought including Crouching Tiger, Hidden Dragon -- it had been a few years. What an excellent movie. Great sword play and skilled horse riding, a beautiful soundtrack and a touching story. When I saw it in the theater it was with English subtitles. This time was English dubbed. I have to say I understood a lot more of the story this time, and was able to really enjoy the cinematography.
Caught up on laundry and made a giant pot of mutton stew with dal and a ton of veggies. Ate it over 3 days... very tasty.
I did finally manage to make it into town today, and wondered a bit farther from the mall. Still looking for a florist for some flowers for my stark white room. No luck there but I did find a pharmacy. Of course nothing was labeled in English, but the staff had a good time following me around and giggling while we pointed at things and I tried to use various Eng->Mandarin tools on my iPod to locate fish oil and calcium. I found them both as well as Spirulina and powdered goats milk. Like at the grocery store, whenever you pull something off the shelf, someone immediately hands you a different brand of the same thing -- or occasionally something that seems completely different. I'm not totally clear if they are showing me better quality, better price, or if they get a spiff for pushing certain brands.
Half of the pharmacy looked like a drug store, the other half had traditional chinese herbs including some more exotic items like dried lizard and hippocampus. I was tempted to buy both -- but couldn't picture how I'd get them back to the states in once piece. Going to have to research what the seahorses are good for.
Today was also a change in the acupuncture routine. Instead of the top of head, back of neck, jaw and right arm -- it was 5 in the stomach and one on the side of each knee. I was glad for the change, I had started to build up some scar tissue, especially behind the jaw that was getting painful when I chewed. I believe we are "stoking the fire" with the stomach work. 3 days of that and then we'll get back to concentrating on the throat and right arm.
My speech is still pretty labored, but my swallowing is completely back to normal and I can tell I have more power in the tongue when I'm eating. I also feel like my right hand has filled out a bit.
We had a new arrival today, Tracy from Seattle! She is here only for a week and is studying at the TCM school here. She's been traveling for several months through Europe and Thailand and stopped here on her way home to check things out. Her plan is to return later in the year for more training and possibly to teach ESL. It was great to talk with another American, especially someone from Seattle (Bothel).
Paula and David, the only other Americans are getting quite short -- they leave for home on Tuesday. I'm going to miss them, it has been great to get to know the two of them. We've commiserated through some of the challenges and their veteran advise has been invaluable.
Tomorrow we hit the 1/3rd mark for my planned time here. Seems like time has passed by very quickly, wonder if it will feel like that at 2/3rds?
Zhídào xià yīcì
It's been snowing steadily for 4 days. For my Minneapolis peeps that seems like not such a big deal but it's like saying it has been snowing for 4 days in Seattle. They are neither accustom or equipped for it. Traffic (which in a normal state is complete chaos) is an e-ticket ride. No plows to speak of, and they are using spades to shovel the walks.
It's been a good time to rest and be lazy in the room. Actually fired up the TV for the first time. 30 channels of pure Chinese culture and language and one channel of state run English speaking news. Kind of a mix between CNN and BBC. Not sure how obvious it is in the states, but Chinese President Hu Jintao is visiting President Obama -- the commentary news is interesting from here. Apparently America should stop trying to "surround" China through it's allied relations with Japan, Korea and Russia and we really need to open up our markets to more Chinese exports -- as well as start selling the Blackhawk helicopter to demonstrate our true commitment to Sino partnership. We also need to stop harping on the human rights issues.
Didn't need more than about an hour of that propaganda.
I also watched a few of the movies I brought including Crouching Tiger, Hidden Dragon -- it had been a few years. What an excellent movie. Great sword play and skilled horse riding, a beautiful soundtrack and a touching story. When I saw it in the theater it was with English subtitles. This time was English dubbed. I have to say I understood a lot more of the story this time, and was able to really enjoy the cinematography.
Caught up on laundry and made a giant pot of mutton stew with dal and a ton of veggies. Ate it over 3 days... very tasty.
I did finally manage to make it into town today, and wondered a bit farther from the mall. Still looking for a florist for some flowers for my stark white room. No luck there but I did find a pharmacy. Of course nothing was labeled in English, but the staff had a good time following me around and giggling while we pointed at things and I tried to use various Eng->Mandarin tools on my iPod to locate fish oil and calcium. I found them both as well as Spirulina and powdered goats milk. Like at the grocery store, whenever you pull something off the shelf, someone immediately hands you a different brand of the same thing -- or occasionally something that seems completely different. I'm not totally clear if they are showing me better quality, better price, or if they get a spiff for pushing certain brands.
Half of the pharmacy looked like a drug store, the other half had traditional chinese herbs including some more exotic items like dried lizard and hippocampus. I was tempted to buy both -- but couldn't picture how I'd get them back to the states in once piece. Going to have to research what the seahorses are good for.
Today was also a change in the acupuncture routine. Instead of the top of head, back of neck, jaw and right arm -- it was 5 in the stomach and one on the side of each knee. I was glad for the change, I had started to build up some scar tissue, especially behind the jaw that was getting painful when I chewed. I believe we are "stoking the fire" with the stomach work. 3 days of that and then we'll get back to concentrating on the throat and right arm.
My speech is still pretty labored, but my swallowing is completely back to normal and I can tell I have more power in the tongue when I'm eating. I also feel like my right hand has filled out a bit.
We had a new arrival today, Tracy from Seattle! She is here only for a week and is studying at the TCM school here. She's been traveling for several months through Europe and Thailand and stopped here on her way home to check things out. Her plan is to return later in the year for more training and possibly to teach ESL. It was great to talk with another American, especially someone from Seattle (Bothel).
Paula and David, the only other Americans are getting quite short -- they leave for home on Tuesday. I'm going to miss them, it has been great to get to know the two of them. We've commiserated through some of the challenges and their veteran advise has been invaluable.
Tomorrow we hit the 1/3rd mark for my planned time here. Seems like time has passed by very quickly, wonder if it will feel like that at 2/3rds?
Zhídào xià yīcì
Tuesday, January 18, 2011
Sunday's Hour(s) of Power
Took a few days off from blogging, there were some technical difficulties -- the proxy I'm using seems to support Facebook javascript calls, but doesn't work so well with many other sites including blogger. The internet connection has been problematic as well, plus I needed to take a little break from the computer.
We also had a full day (Sunday) with no power. We were warned in advance -- it was due to construction in the area, and the staff did what they could to make things bearable. It went off at 6:45am and since the heat is electric, the first priority was warmth. Dozens of rubber water bottles were filled and distributed as well as extra blankets and an open fire "pit" was lit on the first floor.
They also offered the distraction of leaving the facility for the day -- I was initially not going to go, but decided at the last minute that my spirits would probably do better by going out.
We were taken to a park, it was nice -- more cement than greenery, but given the time of year there wouldn't be much green anyway. There were 3 traditional pagoda style buildings, one was at least 20 stories tall and very ornate. The "Peoples Park" was along a river and there were gardens and paths with groomed trees and bushes.
There was an interesting walkway across the river. 50 or so 2x2 square stones came up out of the water in pairs, each spaced about a foot apart. One side was about 8 inches taller than the other. They allowed you to walk across the river with sure footing, but there was no rail. Waking across was really more of stepping one foot and then the other on each stone. You could take a longer stride and hit each stone with only one foot -- but a slight trip and you'd be in the river. An interesting experience, not terribly practical as there is no way for river traffic to pass.
We didn't stay very long as there was a decent wind and it was pretty chilly. The bus then took us to the New Life Mall -- the same building that houses the supermarket where we shop for groceries 3 days a week.
Normally we don't have enough time to shop for groceries and see the rest of the mall, so it was interesting looking around.
We had lunch together at a large restaurant where all of the various dishes were sitting out, you selected what you wanted, it was written on a card and brought to you after being prepared fresh. There was a wide selection, lots of veggies, and of course many things I've never seen before.
I settled on a seafood dish with small squid, shrimp, clams and sausage stuffed mushrooms. It was served on an elevated tray with a sterno fire going underneath. It was pretty tasty and a nice change from what I've been eating.
I shared the table with 3 other men, Emilio from Barcelona who had been at the clinic since early December and Hans and his son Gerhardt from Austria who had just arrived the day before. Emilio has atrophy in both arms -- but said his condition had improved during his stay. Hans had muscle loss in his tongue and throat as well as all of his limbs. Both were very positive and had a great outlook on their lives and general health. We laughed a lot and shared stories of our careers and diagnosis and progression of symptoms. It was the best connection I've had yet with other men on the same journey.
We spilt up after a long casual meal and I wondered around the 5 floors of the mall. It was really more of a large department store than a mall, each floor dedicated to certain goods -- ladies, men and childrens clothes, household goods and electronics. Of course I spent an hour or so looking over the various gadgets. Lots of hand-held MP4 video players, some very cheap netbooks (sub $100), digital cameras and remote control toys. I spent a little time considering a remote control helicopter, but I know that it would be fun for a day or so until it broke -- then I would be stuck with yet another piece of broken tech that I would eventually toss. But they were cool looking :).
The day before we had come into town as part of our regular schedule and went to an open air market instead of the mall. I'll save the details of the market for another post -- but between the two days of walking around I was pretty beat.
When we got back to the clinic we started cooking dinner (gas stoves fortunately) and only had to wait a few hours before the power was back on. There was a big cheer when the lights came on -- amazing how things you normally take for granted are celebrated when they return to their normal state of being.
Treatment came at 7pm, with the massage ending around 8:30 -- I collapsed into bed.
We also had a full day (Sunday) with no power. We were warned in advance -- it was due to construction in the area, and the staff did what they could to make things bearable. It went off at 6:45am and since the heat is electric, the first priority was warmth. Dozens of rubber water bottles were filled and distributed as well as extra blankets and an open fire "pit" was lit on the first floor.
They also offered the distraction of leaving the facility for the day -- I was initially not going to go, but decided at the last minute that my spirits would probably do better by going out.
We were taken to a park, it was nice -- more cement than greenery, but given the time of year there wouldn't be much green anyway. There were 3 traditional pagoda style buildings, one was at least 20 stories tall and very ornate. The "Peoples Park" was along a river and there were gardens and paths with groomed trees and bushes.
There was an interesting walkway across the river. 50 or so 2x2 square stones came up out of the water in pairs, each spaced about a foot apart. One side was about 8 inches taller than the other. They allowed you to walk across the river with sure footing, but there was no rail. Waking across was really more of stepping one foot and then the other on each stone. You could take a longer stride and hit each stone with only one foot -- but a slight trip and you'd be in the river. An interesting experience, not terribly practical as there is no way for river traffic to pass.
We didn't stay very long as there was a decent wind and it was pretty chilly. The bus then took us to the New Life Mall -- the same building that houses the supermarket where we shop for groceries 3 days a week.
Normally we don't have enough time to shop for groceries and see the rest of the mall, so it was interesting looking around.
We had lunch together at a large restaurant where all of the various dishes were sitting out, you selected what you wanted, it was written on a card and brought to you after being prepared fresh. There was a wide selection, lots of veggies, and of course many things I've never seen before.
I settled on a seafood dish with small squid, shrimp, clams and sausage stuffed mushrooms. It was served on an elevated tray with a sterno fire going underneath. It was pretty tasty and a nice change from what I've been eating.
I shared the table with 3 other men, Emilio from Barcelona who had been at the clinic since early December and Hans and his son Gerhardt from Austria who had just arrived the day before. Emilio has atrophy in both arms -- but said his condition had improved during his stay. Hans had muscle loss in his tongue and throat as well as all of his limbs. Both were very positive and had a great outlook on their lives and general health. We laughed a lot and shared stories of our careers and diagnosis and progression of symptoms. It was the best connection I've had yet with other men on the same journey.
We spilt up after a long casual meal and I wondered around the 5 floors of the mall. It was really more of a large department store than a mall, each floor dedicated to certain goods -- ladies, men and childrens clothes, household goods and electronics. Of course I spent an hour or so looking over the various gadgets. Lots of hand-held MP4 video players, some very cheap netbooks (sub $100), digital cameras and remote control toys. I spent a little time considering a remote control helicopter, but I know that it would be fun for a day or so until it broke -- then I would be stuck with yet another piece of broken tech that I would eventually toss. But they were cool looking :).
The day before we had come into town as part of our regular schedule and went to an open air market instead of the mall. I'll save the details of the market for another post -- but between the two days of walking around I was pretty beat.
When we got back to the clinic we started cooking dinner (gas stoves fortunately) and only had to wait a few hours before the power was back on. There was a big cheer when the lights came on -- amazing how things you normally take for granted are celebrated when they return to their normal state of being.
Treatment came at 7pm, with the massage ending around 8:30 -- I collapsed into bed.
Saturday, January 15, 2011
Reflections on week 1
It's Saturday, I arrived at the clinic a week ago.
It has been a week that at times felt like a cross between burning man and basic training (without being yelled at and told to "drop and give me 20". But the ever-present fireworks remind me of the Howitzers in the distance so many years ago.)
Daily treatments go easy and are welcome. Acupuncture now includes needle "pounding" the jaw, alternating each side daily and tongue stabbing. Mmmmm, stabby.
It's really not as bad as it sounds. The hardest thing is keeping my tongue stuck out for longer than 10 seconds. Like most needling (with the above exception) it is generally just an unfamiliar sensation, with the anticipation of pain -- and when it moves to uncomfortable that anticipation is amped.
The morning routine is getting stronger -- and helping. This morning I woke up and felt like lying in bed until the 9am rounds, but discipline is the mother of movement through the moment. Just had to get started -- light the candle, start to pray and soon I was singing the loudest chakra mantras yet!
Then, I read the emails and comments from so many of you -- and I cried, and laughed. They provide an additional source of strength to keep at it.
So, at this point in time, 1/6th of the way through -- would I recommend others diagnosed with ALS to come?
Benefits:
TCM expertise -- these folks live it, and have specialized in the treatment of ALS and other neuro disorders.
Isolation which provides an opportunity for focus and intention.
Community which provides empathy and hope.
Challenges:
Food is foreign, and not just because it's hard to find cows milk, or meat you can trust, or pizza. When you are on a restricted diet (as most of us have moved to) not having access to various gluten-free / organic items, or knowing what ingredients are in the various sauces (hard to read labels when they are in Chinese) -- your diet becomes even more restrictive by necessity.
Not knowing the language, makes you illiterate, and to some extent deaf and mute. Lots of pointing and grunting and frustration as you try to communicate. Yes there are translators, but much of the information is lost in translation or simply not translated at all.
China is rushing into the 21st century. The clinic is modern, as is the supermarket -- but all around there are people living in conditions that are considered by many westerners as primitive. The roads are dirty, the air can be thick with coal and diesel smoke and germ killing cleaners aren't as common as one may be accustomed to.
You aren't home with friends and family.
Conclusion:
If you can find the expertise in herbs, acupuncture and massage close to home -- you may be better served to not subject yourself to the long flight, the stress of communication and limited access to the type of nutrition and amenities you are used to.
However, if you have the resources and the strength (and even better have someone who can make the journey with you), and access to TCM is too scarce or too expensive at home, by all means consider this a viable option.
My body is stronger and more in balance everyday. Is it a cure? No. But it does give my body the best fighting chance to slow, stop or even regress the symptoms of this horrible disease.
It has been a week that at times felt like a cross between burning man and basic training (without being yelled at and told to "drop and give me 20". But the ever-present fireworks remind me of the Howitzers in the distance so many years ago.)
Daily treatments go easy and are welcome. Acupuncture now includes needle "pounding" the jaw, alternating each side daily and tongue stabbing. Mmmmm, stabby.
It's really not as bad as it sounds. The hardest thing is keeping my tongue stuck out for longer than 10 seconds. Like most needling (with the above exception) it is generally just an unfamiliar sensation, with the anticipation of pain -- and when it moves to uncomfortable that anticipation is amped.
The morning routine is getting stronger -- and helping. This morning I woke up and felt like lying in bed until the 9am rounds, but discipline is the mother of movement through the moment. Just had to get started -- light the candle, start to pray and soon I was singing the loudest chakra mantras yet!
Then, I read the emails and comments from so many of you -- and I cried, and laughed. They provide an additional source of strength to keep at it.
So, at this point in time, 1/6th of the way through -- would I recommend others diagnosed with ALS to come?
Benefits:
TCM expertise -- these folks live it, and have specialized in the treatment of ALS and other neuro disorders.
Isolation which provides an opportunity for focus and intention.
Community which provides empathy and hope.
Challenges:
Food is foreign, and not just because it's hard to find cows milk, or meat you can trust, or pizza. When you are on a restricted diet (as most of us have moved to) not having access to various gluten-free / organic items, or knowing what ingredients are in the various sauces (hard to read labels when they are in Chinese) -- your diet becomes even more restrictive by necessity.
Not knowing the language, makes you illiterate, and to some extent deaf and mute. Lots of pointing and grunting and frustration as you try to communicate. Yes there are translators, but much of the information is lost in translation or simply not translated at all.
China is rushing into the 21st century. The clinic is modern, as is the supermarket -- but all around there are people living in conditions that are considered by many westerners as primitive. The roads are dirty, the air can be thick with coal and diesel smoke and germ killing cleaners aren't as common as one may be accustomed to.
You aren't home with friends and family.
Conclusion:
If you can find the expertise in herbs, acupuncture and massage close to home -- you may be better served to not subject yourself to the long flight, the stress of communication and limited access to the type of nutrition and amenities you are used to.
However, if you have the resources and the strength (and even better have someone who can make the journey with you), and access to TCM is too scarce or too expensive at home, by all means consider this a viable option.
My body is stronger and more in balance everyday. Is it a cure? No. But it does give my body the best fighting chance to slow, stop or even regress the symptoms of this horrible disease.
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