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".

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.

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.

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.

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! 

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!

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!

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.

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.

1000 words

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!

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!

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!

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.

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.

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.

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.

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.

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