Travel update from Grace

Our adventure has so far been great. And Kevin has been a great help.(mainly with the dishes and RV hookups.) I gave him the name Banana Man because I couldn't remember the name Cabana boy.(So I called him the word that was the most similar.)
Driving has been smooth and by the end of the first day we made it into Georgia. My mom and Kevin are sad that it is not peach season.....
All is well and soon we will be back up in minneapolis.(and I'm preparing for the hot wether.)

Housing needed

We are looking for a short-term (3-6 mos) rental of a wheelchair accessible home (house, apartment, condo) 2-3 bedroom, 2 bath, pet friendly. Ideally close to downtown Minneapolis.

Transitioning again...

Beginning the preparations of returning to Minneapolis. It's hard to believe we've been here almost four months already!

Our plans are to leave this lovely winter retreat home around April 15, spend a few days in Orlando and Ocala with my family then begin the trek up north. We will be joined by our good friend and fellow Hippo, Kevin Wanamaker. He has agreed to provide logistical support and comic relief ;)

Once landed we will finalize our process of buying a new home. We've been engaged in the search for months, viewing homes online and working with our patient and helpful realtor, Ephraim Eusebio of Bjorklund Realty.

We will most likely be in a temporary housing situation for 1 to 3 months, which could include some time in an extended stay hotel unless we are able to find an accessible short term rental. If you know of an opportunity for such a place please let us know!

Long overdue update

First I must apologize for the lack of updates over the last two months. It has become very difficult to type more than a few words at a time as both my left hand and neck have weakened further. I am composing this post using my Tobii Eyegaze machine. It is slow going, mostly because my eyeglasses seem to interfere with the tracking cameras. As a result I'm spending more time on Twitter (@davidtanderson) than email/FaceBook/blog -- most bang for the effort. I'm looking into Lasik surgery to rid me of the need for glasses at all. (I wish I would have done so earlier, as lying on a flat table for the procedure may prove difficult.)

My diaphragm has also become weaker so I'm not getting the O2/CO2 exchange my body needs, esp at night. This often results in headaches that can last all day. Using the BiPap at night would help -- but I can't wear it for more than 5 min without feeling like I'm suffocating. I am now working with a Respiratory Therapist who is helping me with a Trilogy machine and different masks. There's quite a difference between sleep apnea and a weak diaphragm and the BiPap and mask provided by the VA are designed for the former. Fortunately Medicare is covering the Trilogy.

Finally on the physical front, my walking is only done in short distances -- and always with the walker.

The weather here has continued to be lovely. We've enjoyed visits from friends and family and have even started to connect with old high school friends. We spend lots of time laughing and enjoying the connections.

We've settled into a good routine, which includes several hours of homeschooling each weekday. We are using Khan Academy and other online resources as well as a number of study books provided by Grace's Aunt Karri. We have a cleaning crew come once a week (courtesy of our awesome, sexy and helpful Hippo/Burningman community in Seattle) as well as weekly visits by Physical and Respiratory Therapists.

We are grateful for all of the sweet emails, cards and care packages, we feel very loved and supported. Spirits are good as we continue to adjust to changes and count our many blessings.

Much more to say but I've been at it for over an hour and want to get this posted.

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! 

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.  

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!