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 22, 2011
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.
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".
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.
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.
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!
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!
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