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

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

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

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.

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!

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