Tuesday, July 26, 2011
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
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
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
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
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)
Like I mentioned, the PEG is usually outpatient work, but I'm going to be admitted for 3 days. We were just scheduled for Wednesday
Enjoy Memorial Day weekend, we will be with family and loved ones so I know I will!
Thursday, May 26, 2011
Meet PEG
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
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
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 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'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
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
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
It's been a week since my last update, here are some of the highlights:
Valentines Day - flowers, chocolate and fire. Last weekend was Valentines Day, not really celebrated here in the East but certainly was back in the 612. Margit and Grace were showered with flowers and chocolate from many directions. Thanks to all of you who helped make that day special.
As I posted earlier, it wasn't all candy and roses. A friend's family burned down on Monday night. No one was harmed, but all possessions were lost. Thanks to those of you who offered support and prayers.
And again, I am grateful for the many that donated to offset the costs of me staying longer in China to continue treatments. We have once again raised enough money to cover the duration with some left over to continue treatments once I return home. Thank you all, again.
Another way we are receiving is in direct physical support. Our good friend Brian (aka Legend) has given LA notice and is moving to Minneapolis. He was considering this move anyway, but once he found out I was staying longer he offered to accelerate his plans in order to provide support to Margit and Grace. We are so thrilled that he is becoming a resident member of the 612.
So yeah, Wednesday came and went and I didn't. It was a tough day, my alarms went off reminding me a bout flights home, things got teary on the evening call. I miss my girls and they miss me. We all know the longer stay is for the best, but it is so difficult to be so long between a kiss from my sweet wife and holding my precious daughter in my arms.
Wednesday evening I went to work out and pushed too hard. I ride a stationary bike for 20 minutes to reach a sustained heart-rate of 90+bpm. It is important to get the heart rate up so that the ATP production is maximized (more on that in a future post). I was probably closer to 105, and when I finished I did some more exercise on the elliptical. Bad move, it knocked me out for a few days. Spent all of Thursday and a good part of Friday resting and feeling very week. Working out good, pushing too hard not good. My body does not currently recover like a 45 year old, more like I'm 65. Lesson? Feel more, push less.
There have been a few patients here at the hospital from Bahrain, one is still here. It has been interesting getting their perspective on what is happening there. It is a Democratic Republic with a Royal family (like the UK), but the Prime Minister and his relations have been in power for over 30 years. A small island of a country, but strategically significant because US Naval 5th Fleet is stationed there, just a few kilometers from Saudi Arabia and just across the sea from Iran. As a result the US response has been measured -- which is frustrating to the people of the country that want fair representation and feel that International pressure, and specifically from the US could make the difference.
I met w/ Dr Ming on Saturday to talk about the duration of my stay, March 30 is the new departure date. He offered to help extend my visa past that, but 3 months is the most I'm willing to stay away from Margit and Grace. I do feel like staying on longer will help me to stabilize my improved condition, but there is a point of diminishing returns and given that I'm stronger and my symptoms are fewer -- I see myself home by April 1.
We also talked about his interest in starting a Red Cross Hospital in the US where he would send his knowledgeable staff to extend the work being done here. He is working with the Red Cross Humanity Project to do just such a thing, as well as provide free or discounted treatments to those who cannot afford it. More on that as it unfolds -- but it was a very encouraging conversation.
That's all for now. Still working on the super-secret project. With the change in departure I have a little more time to get it ready for prime-time, but I hope to have more information to you shortly.
Thanks again for the love and support; the donations, the prayers, the emails, the care packages for Margit and Grace -- they are all received as they are intended and we are very grateful.
dta
Wednesday, February 16, 2011
Family of a friend lost their house in a fire
He is working on a website to provide details and support information. In the meantime please add Kathy and John to your prayers.
Here are the posts from Dan's Facebook account:
I've just confirmed that my mom can take PayPal donations at kathyolesen@whitepinestudio.com. Again, they've lost everything they own in a house fire Monday morning, so anything would be appreciated. Also, if you can get this message out, I'd appreciate it. Tiny website with the whole story coming soon.
If you want to help John and Kathy and you don't have PayPal, you can send personal checks and well-concealed cash to:
P.O. Box 26
Vining, MN, 56588-0026
You can find the latest information and support options here:
http://almorafire.org/
Thank you,
dta
Friday, February 11, 2011
Tough Choices
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 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!
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 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









































