Thursday, December 22, 2011

Space Coasted

We had a drama free migration with good travel weather and vehicle karma. The furnace in the RV kept us warm at night even as the temperature dropped below zero. With all of the logistics like feedings, cleanings and walkies, fuel, potty and treat breaks and only one driver we got an average of 5 hrs a day of travel. The 1600 mile trip took 6 days. We stayed in pet friendly Best Westerns a few nights for shower and pool privileges, but slept better in the RV. Once again Margit did an amazing job of commanding 50' of RV and flat-towed van.

The travel was scenic from the rolling Iowa farmland to the stoney Missouri Ozarks, through the grand aged Blue Ridge Mountains of Tennessee and the bogs and red clay of Georgia, to the warm, moist air and palms and pines of Florida. I often  recalled the move we made from Iowa to Florida when I was Grace's age.

We spent a few days with my sister in Orlando before heading for our winter retreat in Satellite Beach. Our friend Mark Clark flew down from Vermont as a surprise for Margit which was a real treat and helped to keep spirits light and unloading easy.

Our home on the water is lovely. Each morning I sit on the back porch and watch pelicans, seagulls, egrets, manatee and dolphins swim and feed in the canals off of the inlet just south of Cape Canaveral. Grace and I have made the 1 mile trip to the beach, her on her bike and me in my chair. Margit is getting us settled in and getting to know the area.

Here is wishing you and yours a Merry Christmas, Happy Hanukkah and pleasant holidays however you choose to celebrate! 

Thursday, December 08, 2011

Migration Begins

We have completed our time at 26th & Lincoln. It is a bittersweet goodbye, loved many things about living in this home. Nordeast is such a great neighborhood, the house was a pleasure to live in -- in healthier times, many fun gatherings great and small.

The RV is packed with what we think we need for the next several months. The van is hooked up and all signs are pointing to a departure this evening. Margit is directing our friends in final clean-up of the house. Again we feel so blessed for all of the help getting us to this point.

Waking up anywhere south of our current position will be welcome. Margit says "even if it's just a foot!" I'm hoping for Iowa...

Lily has just been transferred to the RV -- a sign that departure is eminent.  

Wednesday, November 30, 2011

Nov 30 update

Thanks to the amazing efforts by friends and family, the Minnesota house is packed! Most things are in storage except for what we'll need in Florida. We are not on the road yet, living in a house that is devoid of furniture except for the mattress we will use in the RV currently parked out front.

We are waiting for the tow plate to arrive and be installed on our new accessible van. It should be here by the end of the week. The new van is nice -- 2012 Dodge Grand Caravan with a Rollx conversion side ramp, drop floor and kneeling chassis. Unfortunately it was car 3 in a 3 car collision on the way home from the dealer. No injuries-- but a bummer and another delay in departure.

Finally we had to put Olive, our 2nd basset in a month, down last night. She is survived by Lily, a pernicious 4 yr old French basset. Olive and Ellie were a part of our family for 12 years and will be deeply missed.

Not a great week at Anderhaus, but we persevere and long for the warmth of Florida.

PS: I resume my 4th cycle of OSC on Friday. Still a bit of a roller-coaster as most gains still diminish within a few days of being "off".

Friday, October 21, 2011

More on Sodium Chlorite

I have received some emails and comments regarding oral Sodium Chlorite. I wanted to post responses here for visibility.

First, this is NOT MMS. The concentration we are using is much lower and the activation is different.

The ingredients are 5% Sodium Chlorite solution (aka Stabilized O2 here), distilled water, and non-ionized kosher salt. The mix is weight dependent. There are specific instructions on calculating, mixing and dosing at the project website here:

https://sites.google.com/site/alschlorite/

It is critical to understand the documents in the Instructions and Templates section under Project Documents. There is also a Dosage Calculator at the site. A bad mix can make you very ill so please confirm your calculations.

If you have any questions or want to triple check your mixture, I highly recommend posting your mix on the als.net Forum here:

http://als.net/forum/Default.aspx?g=posts&t=49413

There are many helpful individuals there that are more than happy to help.

Also, please track your results using the templates provided so we can all benefit from the trial.

On a personal note, most of my improvements from round 1 have dissipated. But this is consistent with those on the NP001 and WF10 cycles. The duration should improve with each round.

Monday, October 17, 2011

Something wonderful is happening...

This morning I whispered to Margit, for the first time in months. Yesterday I ate an entire plate of food by mouth, for the first time in months. I am typing with multiple fingers, for the first time in, well you get the idea.

I just completed my first round of Sodium Chlorite in the patient led trial I mentioned a few posts back. I attempted to get into the NP001 trial, but it has closed to new recruits due to a surge in interest. The surge is the direct result of its demonstrated efficacy. 

As I mentioned earlier, the chemistry behind the use of NaCI02 has to do with flipping the mode of microphages from attack to nurture. The NP001 and WF10 trials are based on an injectable form of the compound to maximize serum levels in the cerebral spinal fluid. Fortunately, it is well established that the body can tolerate oral consumption as well. The serum levels end up being lower in the CSF, but some of the compound does make it to the brain.

The result is that several knowledgeable individuals have developed a protocol for a DIY trial. The ingredients are all over the counter and inexpensive, a weeks worth of treatment is less than $10.

My improvements are dwarfed in comparison to some others on higher concentrations, but I am starting low to ensure safe tolerance. I bumped up on day 5 and then again on day 7 -- which made me ill. So now I'm off for 16 days and then I'll resume the concentration I was at on day 5 for another week.

Lots to digest, so I'll leave you with 3 links should you care to dig in:

https://sites.google.com/site/alschlorite/home is the online home for people involved. My detailed log can be found here. 

http://als.net/forum/Default.aspx?g=posts&t=49413 is where the bulk of the research and discussions are taking place.

http://www.PatientsLikeMe.com has further discussion and tracking of this DIY trial.

Tuesday, October 04, 2011

August was once again a fun filled month. Started with a beautiful ceremony with extended relations filled with love, light and healing along with wisdom of my elders. Followed by a wonderful birthday celebration filled w friends, amazing food, great music and lots of laughter.

Next came the realization the we had the means to go to Burning Man! This included purchasing an RV for the trip (and later use for our winter stay in Florida). We had to get one that Margit felt comfortable driving. We found a great match in a 1994 Class-C Gulfstream. Measuring 31' bow to stern, she's the biggest one we've owned (#3). Margit did much of the driving to and most all the driving back from Nevada. Our trip back included extra time in Yellowstone. Burning Man was classic hard and wonderful at the same time... although I had a bit less hard and a bit more wonderful than my dear, sweet wife. (Thank you my love, for all your work planning, packing, loading, driving, dressing, bathing, cooking, feeding and loving your family so much to make Burning Man happen for us this year. You are the embodiment of sexy and helful.)

September brought school in for our dear 4th grader, who is growing smarter and more talented each day. Also another beautiful, intimate ceremony weekend and some much needed time to integrate the past year.

We've begun planning our packing in preparations for the winter in Cocoa Beach, FL. We've suspended our search for a new house until we return in the spring.

Friday, September 30, 2011

ALS treatments

My typing is a bit challenged at the moment and August and September have flown by in their usual blur of end of summer activity. I will post a catch-up, but I replied to a request for information email and thought it best to share it

The 2 best ALS treatment resources I have found are the forum @ als.net and PatientsLikeMe.com. I recommend reviewing both sites at least once a month.

There are 4 drug trials that are all generating hope. Neutralitus NP0001, and WP10 are both sodium chlorite trials that are showing high efficacy in slowing progression. There is even a renegade group of PALS that are using a DIY approach using over-the-counter ingredients.

There is also the Dexpramipexole Phase Iii trial which is in open enrollment w promising outcomes from PI/PII trials. Probably the closest to FDA approval, and HCMC is a trial site. 

Neuralstem has released amazing results w their latest stem cell injections at Emory in Atlanta. The most expensive/exclusive trial of the four as it is only in Phase I -- but 8 of 12 have halted progression and 2 have strong evidence of regeneration of lost functionality. 

TCM is still valuable in my opinion. It is helpful in keeping the body in balance as much as possible as it changes through disease progression. China is the best place for inexpensive and concentrated TCM -- but no cure. I am still using the herb formula I received from my visit, but I am using a local accupuncture Dr and getting herbs from Northwestern U in Bloomington. I hope this info helps! 

Wednesday, August 03, 2011

Watchin the tube

...as in my new "G-tube" or feeding tube. New because the old one fell out Monday night. I was eating dinner and looked down and it had simply fallen out. It had been a little tender from the weekend -- sitting up in prayer/ceremony all night Saturday and then doing a sweat lodge on Sunday.

I went to the VA on Monday night and a nurse was unable to insert a temporary tube which was unfortunate because the stoma began to grow over.

I went into the VA for an already scheduled appointment to have it replaced the next day. It was painful! The had to start with a 12mm tube and work their way up to 22mm @ 2mm per increment. I was quite sore yesterday and last night, but I'm feeling much better today, just tender.

Had an amazing, transformative weekend and feel incredibly blessed to be part of such a loving and powerful community. Sending prayers and drinking water for all of the sundancers this week. Thank you for your service!

Tuesday, July 26, 2011

NP 001

I've recently begun the process of getting into my 1st clinical drug trial. This trial is for NP001 from a company called Neuraltus Pharmaceuticals. This is one of two recently developed drugs based on the ability to use sodium chlorite as a mechanism for changing the brain's messaging when it comes to cell death. Essentially this treatment flips a bit that tells the brain to not be so aggressive when recycling cells.

My Nerosurgeon at the University of Minnesota, Dr. John Day, is working with the study coordinator to assist me in getting into the trial. If accepted, I will receive five weeks treatment spread out over several months. It is a double-blind placebo controlled test so there are chances that I might be on the high, low or no dose schedule.

Looking at the reports at PatientsLikeMe.com for those already in the trial shows a strong statistical significance for those who appear to be on the different schedules. Regardless of which test group I am in compassionate case policy says that if they find the drug is doing well all test members would be provided early access to the drug once the trial is complete.

DTA's Healthy Hash (TM)


Brain-health essential ingredients:
olive oil
garlic
ginger
onions
carrots
celery
cilantro
parsley
protein

Put fresh, finely chopped garlic, ginger and onions (to taste) and a generous amount of oil with a little salt in a skillet or wok. Everything is low heat -- don't let the oil smoke. Saute until the garlic is brown.

Add chopped carrots, celery and protein and cover until protein is cooked (or until carrots are soft if the protein is pre-cooked); approximate cooking time 3-5 minutes.

For the last minute or two of cooking add finely chopped cilantro and parsley -- the more the better, think Cobb salad.

Serve over rice.

Substitute grape seed, coconut, apricot seed for olive oil. Other excellent veggies include peas, beans, kale, chard, fennel, etc. Scramble in an egg or two for an additional protein boost!

Tuesday, July 12, 2011

Time with the familes

Just completed back to back celebrations with family of origin followed by family of choice.

We spent 4th of July weekend at the Peterson lake cabin in South Dakota with Margit's family. As always -- a wonderful time. The weather was perfect and the fireworks were great. This was the first year when got to watch from the water around the whole lake. It was also the 13th anniversary of when I asked (in front of family and life-long laker friends) Margit to marry me! We dined on fabulous ribs grilled by Papa Peterson and homemade Key Lime pie by Grandma Jan. We laughed, played, rested and caught up with extended family.

This last weekend we spent in Washington at a wedding with our family of choice (aka: Hippos). Again, and as always -- a wonderful time. The location was exquisit and the ceremony moving. We painted a bus, cooed over baby hippos and watched slightly older ones scream and throw each other around in the pillow pit. We soaked up each others love and danced as hard as full bellies could.

I am blessed, inspired and grateful for all of my family.

Tuesday, June 28, 2011

Doin the Herxy Jerky again

The tube site "stoma" is healing nicely and I'm now keeping up with all of my supplements, herbs, nutrition and hydration goals. I feel more powerful in general, unfortunately it is being off-set by another Herx reaction.

It took a few days for me to realize what was going on. I'd wake up hungry and with plenty of energy but by mid afternoon I'd start dragging and need to lay down for several hours with a headache and an unhappy gut.

Did better today and was preemptive about laying down, that helped a lot.

Sunday, June 26, 2011

Monday, June 13, 2011

Healing at home

The procedure and entire stay at the VA went off without a hitch, I was out of surgery by 11 am on Thursday. For the first 24 hours they just let the feeding tube drain, then it was a slow pump of formula overnight, then gravity feed and finally quick feeding via syringe.

There wasn't much pain at first -- but then I started having cramps right at the tube location. They came every 10-15 minutes and would only last 7-10 seconds, but it took my breath away when it happened. 2mg of Morphine every 2 hours helped to keep the edge off.

I stayed one extra day because of the cramping, but by the time I left on Saturday afternoon I was mostly cramp free. They sent me home with 6 doses of Morphine but I've only used two, just before bed.

Yesterday I went for walk with Grace and my sister Jeana -- it felt good to stretch my legs after 3 1/2 days in bed. Ate a good sized lunch, but it took over an hour to finish.

I've had two solid nights sleep and all the plumbing seems to be working. We've done some feedings and supplement intakes and changed the dressing. It will take some practice, but we'll get into a routine that will keep the nutrition and hydration optimal.

Pictures soon!

Tuesday, June 07, 2011

Clinic day @ the VA

Spent Monday at the VA, for my quarterly clinic day. Like the clinics at the U of M -- I started with an FVC test (a test of lung volume and power), then a round-robin through physical therapy, general medical, psychiatric counseling, social worker and speech therapist.

I received my tetanus shot, got fitted for a back brace and was issued a rolling walker and an app for my iPad to use as an assistive device for speaking. I also got to test drive the latest in power wheelchair tech. I wasn't to excited at first -- I'm not ready for a chair and don't want to rush things, but it was a pretty amazing piece of gear. Hills, curbs, holes were all easily navigated. A 300 pond beast, so vehicle and house mods will be required if / when that time comes.

I go in tomorrow for my Thursday PEG date -- so a full week of the VA for me!

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 Wednesday June 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!

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.

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.

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.

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.

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.

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.

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.

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

Wednesday, February 16, 2011

Family of a friend lost their house in a fire

The family of a good friend, Dan Nordquist, lost their house and possessions in a fire Monday morning (February 14).

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

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.

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!

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

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.

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

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

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

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.

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.

Friday, January 14, 2011

Day 4

There's a room full of people in your head, in your head,
Yes there's a room full of people in your head, in your head.
And every single one of them knows your name.

So goes the song by Craig Minoa of Cloud Cult.

Woke this morning with the critic on the mic. I'm not doing enough, just going through the motions, checking things off my list so at some point I can turn back to God, or my Doctors or anyone else and scream "IT'S NOT MY FAULT!!! -- SEE LOOK, I DID EVERYTHING I COULD..."

Ugh.

Screaming, more of that. I grabbed a pillow on Sunday and screamed for about 30 seconds - everything felt better, and my voice dropped.

No water for most of the day today. Dr Ming is visibly upset, but something that is obviously not in his control. Talking with others about it, this is not common but not unheard of.

So we all pitched in and boiled water in the kitchen for dishes (we still have a hot/cold water cooler in the room, so plenty to drink). I was planning on a shower and laundry today -- best laid plans.

Tremors are high today and all over my body. Nothing uncomfortable, and no cramping -- I like to think it is a good thing. The muscles are "beaconing" to the neurons for signal. Healthy neurons can take the place of those that have become too weak to signal -- with the potential to expand by a factor of 5!

Cooking my own meals today -- and glad for it. Nothing tastes as good as your own food.

The morning routine is pretty much set. If I'm up by 6 I get through it all by 9 in time for the Doctor's rounds. Then tea, a little video chat with my sweet wife and daughter and acupuncture and massage takes me to almost 1.

Making, eating and cleaning up lunch takes about 2 hours -- a nap, exercise, a little computer time and then dinner. Meals are a social time -- hanging out cooking in the kitchen with everyone else is enjoyable. So far everyone I've met is here for ALS treatment.

After dinner and cleanup another video chat, and if I have the energy some reading or computer time.

Hard to believe I used to work 10 hours a day.

Thanks for all the comments and emails. It helps to hear from you and stay connected.

Until tomorrow -- love from China.

Tuesday, January 11, 2011

Day 3

Was woken @ 1:30 by fireworks -- apparently a common occurrence no mater what time of year. Unfortunately it hit me wrong in my sleep cycle so I was up till about 3:30. Up @ 6:30 for the morning routine, now complete with tongue exercises!

As part of the team rounds they put me on a heart monitor. The suction cups didn't want to stick because of the hair on my chest, so I've finally succumbed to a bare chest. Looks kind of ridiculous to me, and it shocked M&G when I lifted my shirt on our video chat.

2 eggs for breakfast along w noodle soup, this should be a real test for the allergies. Even more needles with Tom and then beef w cumin, steamed veggies and rice. Then off to the market!

There is a clinic bus that goes into Hauihua 3 times a week. This was my first chance to meet some of the other "guests". As it turns out I was the only patient, everyone else is a care
giver. Atusa from Innsbrooke, Austria is here with her mother. Turns out that Atusa studied TCM under Dr Ming 10 years ago. She had great things to say about him and his work as both a healer and a master. Paula here with her son David from Vermont and Tarida and Osama, both here with family members -- all being treated for ALS.

The ride took us through a much more modern part of the city than the ride from the airport. With only 6 million people, Huaihua is considered a "small" Chinese city. Much more crowded than Shanghai, lots of traffic -- from scooters to busses and trucks all weaving and honking and waving. No road rage, just getting along in very tight and fairly unstructured ways.

The supermarket was overwhelming. The translators were there to help, as was Atusa -- for which I am very grateful. I managed to find most everything I was looking for, and lots of stuff I've never seen in my life.

I'll probably go back on Saturday to do some clothes shopping. None of my jeans fit anymore, and the prices are pretty amazing. Everyone is dressed nice in new clothes, and I can see why.

Need to keep this one short, I'm pretty tired between the short night, no nap and the trip into town.

Day 2

Sorry about the double posting, didn't hit publish on Day 1 yesterday.

Woke at 6:30 after 10 hours of sleep. Meditation, mantra and QiGong all before 7:30 the official wake time, which felt great. I'm using the "Waking the Cobra" seed mantras for meditation as well as Om Namah Shiviya using a full mala. The whole thing takes about 45 minutes and all out loud. The walls are a little thin here, and my voice has a drone to it anyway -- I'm sure some of the staff wonder just what is going on in my room. But, I have to get over being concerned about that -- not here to impress anyone.

Breakfast arrived at 8:30, noodle soup and veggies again w/ egg. Not so sure the egg is a good long-term plan, I recently tested with a moderate allergy to eggs so I've been avoiding them. But, the breakfast menu is pretty limited and eggs are the only protein and high protein is the priority. Hopefully I'll be able to find some protein powder when I go to the market tomorrow.

Daily round with the team @ 9. The professor wants me to start taking calcium supplements as well as do tongue exercises to combat the atrophy.

Did some shopping on Amazon, looking for a good acupuncture book to help me log the points being used as well as a book on Chinese history and culture. Found a number of free kindle books on Chinese history and a sampled a few good acupuncture books. I love the kindle store -- you can sample a book in the reader, and many of the samples are dozens of pages.

Herbs showed up @ 10am just as I was saying goodnight via video chat w/ Margit and Grace.

11 brought Tom for acupuncture and tui-na massage. More needles today than yesterday; 5 on top of the skull, 7 in the back of the neck, 1 deep in the upper back (3 inches), 6 down the right arm one in the left and two in the right foot, and my favorite, one under the chin. They are concentrating most of the work on voice and tongue to start. Nothing really painful, but not exactly comfortable -- especially when I swallow. 30 minutes later the needles come out and then it's another 30 minutes of massage. Medium to deep tissue work, mostly head, shoulders, neck and arms.

Lunch @ noon was mutton "hot pot". Massive boiling bowl of lamb bits and lotus root, cooking via sterno. Pics coming soon...

Nap from 1-2:30 then studying and logging the points used. While studying I learned that moving while having the needles in is recommended, especially for ALS. So tomorrow I'll see how that feels. Certainly not the most intuitive thing to do given the depth of some of the needles.

A little email and Facebook and a failed attempt to video chat with my friend Legend, then it was beef (I hope) and celery, mushroom and corn soup and rice. Again, a tasty meal -- as long as you don't spend too much time thinking about it.

Some planning for the trip to market, evening mantra and a good morning video chat with M&G and I was in bed by 9.

Day 1

Woke at 6:00 refreshed and happy to be here.

Bed is very firm, apparently my body likes it as I slept well. As I mentioned in my Day 0 post I have my own heater in the room. It's actually a heater / air-conditioner. Very fancy with a remote control -- unfortunately all in Chinese. Since I'm not suppose to run the heater at night I woke to a chilly room, so before getting out of bed I tried turning it on via remote. After about 10 minutes I crawled out from the comforter to find I had turned on the AC!

After a few minutes of fiddling I got it to start cranking out heat.

Did some QiGong, but did not complete all 8 brocades before breakfast arrived. Noodle soup with and egg and some green tea. The tea turns out to have been a mistake -- it was quite tasty (I'm in China after all) but it really kicked up the tremors. I had mostly stopped drinking caffeinated tea for that reason -- today just confirmed I need to stick with the herbal and flower varieties.

After breakfast the daily routine continued with my check in with Dr Krista, Tom, nurse CC and Susan (another translator as John had the day off). I found out that my daily treatment would be scheduled for 11am. This will work well as it gives me a structured morning up until lunch and siesta.

Lunch was chicken and celery with steamed veggies and rice. Very tasty.

After lunch I tried to print out my list of supplements and my medical records. All together about 50 pages. When I took the documents on a USB stick to the translators office they looked at me like I was crazy. 50 pages seemed like an unreasonable request.

While I was waiting, one of the translators was bumping deep house. I think I'll have to connect with him another time ;).

This afternoon I tried out the work-out room, 20 minutes of bike and eliptical, then a few minutes with barbells, finishing off with 30 minutes in the massage chair. Gotta get me one of those...

Back to my room, freshly cleaned -- started working on a blog post when dinner arrived, a whole fried fish (some kind of white fish), eggplant and of course, steamed rice.

No meditation or mantras today, but I will have time to work them into the routine tomorrow morning.

Sunday, January 09, 2011

Day 0

I arrived at the Zhongfang Red Cross International Hospital Saturday morning after being picked up by my translator "John" at the Huaihua airport.

The drive from the airport was interesting, I took some video and will upload in a future post. We passed very old, old, newer and brand new structures -- all seem to be randomly build next to each other.

Lots of trucks and busses on the road, the ever present scooters and motorcycles and the occasional passenger car. Then there are these what look to me to be diesel powered rickshaws. Where instead of a person pulling the cart, there is a two wheeled diesel engine. There were some carts being pulled by people as well, including one by a man wearing a suit!

As we approached Zhongfang (20 miles south) 20-30 story buildings started to appear and rows of identical multi-family dwellings like you see in suburbs off the highway in the states. Zhongfang is China's "youngest city" -- celebrating it's 3rd year and from what I saw driving in is one giant construction zone.

The hospital is a nice 6 story brick and cement building, the entire front half of the building above the 2nd floor is open with large balconies facing toward the city. Lovely in the spring and summer I'm sure, but makes for a cold building when it's 2 degrees celsius.

I was taken to my room, 45 sq meters with it's own bathroom, heater, mini-fridge and water cooler. Two beds, dresser and armoire, one treatment table, a desk, 40" flat panel TV and a few chairs. Comfortable but sparse with tall ceilings and nothing on the white walls except a mirror.

Lunch was delivered to my room, a tasty meal of chicken, bok choy and rice.

After an hour to myself of eating, unpacking and reading the "Information Guide" I was escorted to a conference room where I met my team: Dr. Ming (center president), Dr. Krista (my assigned doctor), nurse CC, Tom the acupuncture and massage practitioner, translator John and then there was Professor ______. I didn't catch her name, as it was the only one that wasn't westernized (or short) -- but she is definitely the elder of the group. Everyone cued off of her questions as they discussed among themselves in Chinese and asked me questions through John (except for Dr. Ming who is quite competent with English).

The team then came back to my room where they spent about 30 minutes reading my pulses, looking at my tongue (two primary diagnostic protocols in TCM) and looking at my right arm where most of the atrophy has occurred. After everyone left the Professor stopped by again (but without a translator) and showed me some paperwork (in Chinese) and said a few things to me (again in Chinese) but had a knowing smile on her face. It seemed to me she was telling me that she was going to manage my case directly -- I did my best to communicate back that I thought I understood. She smiled, nodded and left. Again, I'm not exactly sure what it was all about but I was comforted by her presence and spirit.

About an hour later Tom came in (with translator) and I received my first treatment. More details on his technique in the future, but he was confident with his needles and gave a strong and thorough tui-na (medical massage).

My herbal tea arrived shortly after the treatment. I drank one bottle and completed unpacking. It was much stronger than what they have had me drinking at home for the last few months -- and they definitely switched up the formula. Now with 20% more pungent tastes!

Dinner came an hour or so later, I barely finished because I was so tired. Had a quick IM with Margit then washed up and was in bed by 6:30. Had to set and alarm for midnight so I could take my other bottle of herbal tea. Woke up, drank the tea, crashed until 6:00 am. I woke up feeling rested and happy to be here.

Feeling grateful for all of the help received to arrive here and excited about the healing that has already begun.

-dta

Thursday, January 06, 2011

Arrived in China

It was a long flight, 12 hours to Tokyo, a few hours layover then a 4 hour flight to Shanghai.  It was almost a full 24 hours from departure in Minneapolis to arriving at my hotel.

The flight to Tokyo was a large plane and was packed. Since we were flying west it stayed light until just before landing, added to the surrealness of it all.

Customs in Japan and China was a breeze ( actually the whole trip, which has not been the case for me in several years since my common name is on the no-fly list.)

I was impressed by the size of the airport in Shanghai. Easily the most immense complex I've ever seen.  Very modern and spacious, the few hundred people at baggage claim seemed small compared to the space.

The taxi ride to the hotel also had the same feeling. Lots of well lit roads with very few people traveling. As we got closer to the city center I expected to see a crowded city, but most of the large apartment buildings we passed looked mostly empty and the city seemed asleep. I arrived at the hotel (Ramada Plaza) around 10:30pm local time. Even when I got to my room and looked out the window the city seemed quite and sparse.

The hotel guests seem to mostly be western -- breakfast was a mixed fare of west and east. Because of my egg-free diet, I ate mostly veggies and rice. The city is starting to come alive, but again not as crowded as I had anticipated. I'm sure there are parts of this megacity that are dense, but the area I'm in feels like a European business center. I can see the Best Buy offices from my room and the hotel is running an Agile conference for HP. ;)

I complete my travel to the clinic in the morning, should arrive late afternoon.  Feeling good, all limbs are functioning well. My speech is slurred and slow, but I'm not talking much so it's not a problem. I have a few apps on my iPad that let me type in English and it will translate to Mandarin, as well as allow others to type or draw Mandarin with translation back.

Everyone I have encountered has been very friendly and helpful, a great start to the trip!

More from Zhongfang in a day or so!

Much love and gratitude,

  -dta