tag:blogger.com,1999:blog-62884262024-03-07T19:49:23.333-08:00David T. Andersondtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.comBlogger288125tag:blogger.com,1999:blog-6288426.post-24216848682829151552012-10-28T11:16:00.000-07:002012-11-02T11:41:47.010-07:00My final projectI have been blessed to be provided the industry standard in eyegaze technology. A self contained touch screen PC with infrared cameras, wifi, bluetooth, web camera and cell phone. Bundled with communication and environmental control software, it is a powerful tool that I rely on day and night to be my voice in the real and virtual world. <br />
<br />
This is provided to me at no cost by the VA because ALS qualifies me to be 100% service connected. The cost however to the VA (and American taxpayer) is $15, 000. This puts the device out of reach for most of the people who would benefit the most from this essential gear. <br />
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It is also unfortunate that the hardware itself is generations old, quite under powered and the software is buggy and incomplete. <br />
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I spent the last 8 years of my 3 decade career on software quality assurance and process improvement. It is obvious to me that resources and a commitment to usability have diminished over time for this device. <br />
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It is primarily for these two reasons (cost and usability) that I have chosen as my final career project to use my experience, skills, time and resources to make gaze technology as good as it can be and as affordable as possible. <br />
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Fortunately I will be standing on the shoulders of modern operating systems and platforms, the DIY communities like Gazegroup.org, open source projects from groups like Cambridge University Inference Group and websites like bltt.org<br />
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I am also blessed to have an amazing community of family and friends to support me in this en devour. The <a href="http://1blinkequalsyes.com/">http://1blinkequalsyes.com</a> Kickstarter is our first step in realizing this vision. In the first 5 days we exceeded our first funding milestone and are now stretching for enough funding to pull together a first iteration of a complete system. <br />
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My deepest gratitude to Harley, Pete, Hamil and the campaign backers for executing and funding this critical first step. <br />
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Please pass along this post and/or the Kickstarter site to anyone that might be interested in supporting this en devour. <br />
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Thank you. dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com0tag:blogger.com,1999:blog-6288426.post-49843309763336999982012-10-11T12:34:00.000-07:002012-10-11T12:35:10.358-07:00Today is the 2 year anniversary of my ALS diagnosis. A significant milestone, especially given the specific manifestation - bulbar. For non bulbar ALS the average survival time is 3 to 5 years from diagnosis. Bulbar survival average is 18 to 36 months. <br />
<br />
Rapid weight loss due to the inability to swallow and aspirational pnemonia are two leading causes. The g-tube I received in spring 2011 was a proactive step in controlling weight loss. It took about six months to learn how to get the proper nutrition and calories without all the toxic chemicals that come with the canned food available for tube feeding. The answer eventually became a paleo diet supplemented by homemade stock and blended with a Vitamix. <br />
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Of course, the recent tracheostomy was another step on the path to longevity. <br />
<br />
But here are some highlights of the last 24 months:<br />
<br />
Retired in October 2010, made possible mostly thanks to the disability insurance provided by my work place. Thank you Mike, Laurance, Jeff and Jason; owners responsible enough to carry this lifeline benefit. <br />
<br />
The same month the VA awarded me service connected status giving me access to benefits including medical, financial, material and family support. This was made possible thanks to a law passed in 2008, requiring the DOD to cover ALS for service members due to the high rate of incidents among Veterans. <br />
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I spent the next few months finalizing treatment options and settled on TCM treatment in China (follow the links to January through March 2011). It was a valuable and amazing time, and I believe it helped to slow and in some cases reverse the progression. Unfortunately it would have taken closer to a year of that level of intense treatment. I still use a modified version of the herb formula they developed for me. <br />
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It was while in China that I completed my Reiki training and became a master practitioner. Something I continue to use in my daily practice. <br />
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I also adopted a glutten free diet around this time based on research that links ALS to high glutamate levels in the cerebral spinal fluid. <br />
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We purchased an RV that Margit was comfortable driving and made our 7th and last trip out to burningman that summer. It was challenging, but worth the efforts to spend time with the Hippocampus community that has become such an important part of our family. <br />
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By summer's end I had lost most of the use of my right hand, but was still able to DJ our Hippo founder's beautiful commitment ceremony. <br />
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I was also able to attend two sacred singing, prayer and meditation ceremonies. These experiences and the communities that support them have brought me closer to God than any at any other time in my life. <br />
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In the fall I started working with the Tobii <br />
eyegaze computer and power wheelchair as typing and walking became more challenging. We also started looking for our next home as living in a multi level house became impractical. <br />
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I started the Oral Sodium Chlorte trial around this time; initially with promising results, but unfortunately short lived. <br />
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We made plans to relocate to Florida for the winter to spend concentrated time with my family. Sadly we lost our two bassets ellie & olive within three weeks of each other. They had been part of the family for 12 years. <br />
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In mid December with the help of an army of friends and family we packed up the Lincoln house and picked up our VA provided wheelchair accessible van, hooked it up to the RV and headed south. <br />
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Our time in Florida was wonderful. We stayed in a lovely home on the water with lots of visits from family and friends from Seattle, Vermont, Minneapolis, Denver, Santa Fe, Brooklyn, and Graz, Austria. <br />
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We journied back north in April with help from dear friend and fellow Hippo, Kevin. We landed at an RV park only blocks from the Lincoln house. <br />
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Despite spending close to 9 months looking for a single level adaptable house (a rare thing in Minneapolis proper), we had not been able to find a match. But we knew we wanted to be near or on some water after our stay in Florida. <br />
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After a few weeks in the RV park we found a downtown apartment that was both wheelchair accessible and basset friendly. As I recently blogged, this is where I had to get the trach. <br />
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So now we have found our house and are in the process of adapting it for our needs. <br />
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It has been an adventurous two years with a heavy concentration on establishing best practices for maximum longevity, spending time with family and friends, and persevering through the transitions with as much gratitude and love as possible. This has been made possible by our amazing families and communities. <br />
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Thank you. dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com3tag:blogger.com,1999:blog-6288426.post-57884460163944797252012-09-10T18:02:00.000-07:002012-09-10T18:02:27.065-07:00The trach has brought many changes, some expected, many not. The medical advice given was that since it was inevitably going to happen, do it sooner rather than later. This is sensible counsel, as having to do it in an emergency situation can have bad long term consequences. <br />
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But, wow. What a giant shift for me, my family and community. <br />
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First and foremost, as I mentioned in my last post is communication. There are hi-tech (hi-cost) solutions and lo-tech hacks, but there are many times when there's only blinks and nods (and flailing legs in desperation). Standing is particularly challenging as my neck muscles have weakened to the point where I can't hold my head up without great difficulty. So eyegaze, toe boards and blinking are not useful for trying to convey anything. This requires a high degree of coordination between carer (a new word in my lexicon) and myself. <br />
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Standing and walking has become quite difficult as well. After 3 weeks of lying in bed at the hospital, my already weak legs have become virtually useless. I have to stand at least once a day just to stretch my calves. This is usually facilitated by the need for bowel activity, a major highlight of the day. <br />
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I have a hi-tech bed that adjusts head, legs and height - topped with an air matress that has individual tubes that are inflated and deflated by a controller that can gently rock me back and forth to help minimize pressure sores. Since most of my day is spent in bed, this is another piece of essential gear. We have added two inch memory foam pad and have built custom arm pads out of carefully sized (read trial and error) and sewn together memory foam. These armrests come complete with holes cut in allowing my elbows to float. <br />
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Getting out of bed requires the help of one muscular person. It's a move of lifting my upper body and head and spinning me so that I'm on the edge of the bed. Next I stand and stretch for a minute then perform a move known as stand and pivot. Whatever I'm transferring to is positioned so that I can turn slightly and sit. While this sounds like a major production, it pales in comparison to the alternative, the "hoyer". <br />
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Google it... dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com1tag:blogger.com,1999:blog-6288426.post-58258682581813965952012-08-07T13:52:00.000-07:002012-08-07T13:53:20.474-07:00A tracheostomy is a procedure where the surgeon makes a small incision in the neck into the trachea (windpipe). Then a small tube is inserted into the stoma (hole). The tube, refereed to as the trach, has a small balloon that is inflated to block the airway. This stops saliva and food from getting into the lungs and helps to hold the trach in place. (There is also a strap that goes around the neck to help secure it.)<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.mayoclinic.com/images/image_popup/c7_tracheostomy.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="480" width="400" src="http://www.mayoclinic.com/images/image_popup/c7_tracheostomy.jpg" /></a></div><br />
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<br />
The balloon is called a cuff. For most, the cuff can be partially deflated which allows for enough air to pass the vocal cords to let the user speak. Because of my weakened throat muscles I have to keep mine full. <br />
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This immediately changed my ability to communicate. While I had been using my eyegaze computer for going online, now it is the main way I communicate. This works when I am lying in bed and nothing is being done to me. Unfortunately having the trach means I must be suctioned, both mouth and lungs (via the trach). This happens several times day and night, and the computer gets in the way. <br />
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So my backup lo-tech solution is a clipboard with a sheet that has the alphabet printed out in frequency of use order. I use my toe to point to letters and spell out words., obviously limiting and often a challenge for the reader if words are long. This is why it was important for me to have an advocate with me throughout my 3 week recovery stay at the VA. This was fulfilled by an army of friends and family, for which I am incredibly blessed and eternally grateful. During my entire stay there was someone at my side, helping me to communicate with the nurses. The staff at the VA were amazed at how many people came to help.<br />dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com3tag:blogger.com,1999:blog-6288426.post-41674539273791488012012-08-02T16:11:00.001-07:002012-08-02T16:11:13.668-07:00A little catch up is in order, I'll try and fill in some blanks left since leaving Florida. <br />
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We had a good trip back, except for the unplanned day spent at the St. Louis VA getting my feeding tube replaced. What a difference there is between the various VA hospitals! I feel blessed to have the Minneapolis VA and the great crew at the SCI/D (spinal cord injury/disability) clinic to work with. <br />
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As Grace's earlier post indicated, we spent a few weeks in an RV park when we arrived in Minneapolis, it was only blocks from our old house which felt homey and allowed Grace to immediately get back into school and connect with her friends. <br />
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It was also where I started having difficulty sleeping because of choking on saliva as my throat muscles weakened. <br />
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We found an apartment, albiet a bit expensive, but the location is convenient and comfortable. It was a little more than a week before we had to call the ambulance to get me to the VA after several nights of trying to find a position to sleep in, without gagging. <br />
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The night we gave in was the third of no sleep. I was accompanied by good friend Ephram, who stayed with me in the ER through the morning, keeping me awake. Then Keya took over for several more hours while we waited to get in for the tracheostomy procedure. <br />
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Fortunately Keya had recently returned from a vision quest, so had some amazing things to share. <br />
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Next post I'll pick up with the trach...dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com2tag:blogger.com,1999:blog-6288426.post-31580443314117290722012-07-09T15:43:00.001-07:002012-07-09T16:55:05.196-07:00An update: ghost-written versionIt's been nearly 3 weeks since being discharged from the VA hospital following trachestomy surgery and we're settling into temporary apartment-living in downtown Minneapolis.<br />
Being in more of a "home" environ has been good for spirits for the entire family be they human or canine. Looking forward to the Mississippi River view from the new house in FrIdley; potentially as soon as next month as renovation work will soon begin. <br />
The surgery while ending verbal communication has aided the ability to sleep without choking which is a great improvement for both health and spirits.<br />
Meanwhile, we are working on improvements to the eye gaze software, trying to make it far more user-friendly. This would mean David will be able to "write" his own blog posts, texts and emails. A Kickstarter campaign will follow; there will be more to come on this subject...<br />
David demanded that I mention my book, "A Rose by Any Other Name" but I'm not going to do it...<br />
Thanks,<br />
Brian<br />
ps -he also insists that i mention the book is available through amazon and kindle...dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com3tag:blogger.com,1999:blog-6288426.post-9197716469902799402012-05-17T15:19:00.001-07:002012-05-17T15:19:15.304-07:00We are in our new apartmentWe found a place in downtown Minneapolis right off Loring Park. It's a nice place for us for the next three months. <br />
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We are now fully engaged in our house search. Similar needs as the apartment, let us know if you have any leads. <br />
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Our new address is 1300 Yale Place, apt. 232, Minneapolis 55403. <br />
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Thank you Maiya for helping with this entry. dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com1tag:blogger.com,1999:blog-6288426.post-74722791229266986442012-05-07T14:32:00.001-07:002012-05-07T14:32:31.054-07:00Updated housing infoThis is what we're looking for in a temp home:<br />
- Avbl immediately with month-to-month or 3 mo lease<br />
- 3 bedroom, with at least the master BR on main floor<br />
- master bathroom with either: <br />
3-foot clearance around tub (1side), or<br />
Roll-in shower<br />
- allows dogs<br />
- hardwood floors or clean carpet with low pile<br />
- access to yard <br />
- off-street parking<br />
- handicap accessible -- front door must be less than 3' off ground (to allow for ramp) and doorway be at least 3' wide <br />
- preferably NE or S or U area (close to Marcy Elem)<br />
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That's all we can think of at the moment... Let us know if u have specific questions that will help the search.dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com5tag:blogger.com,1999:blog-6288426.post-81399789350483244012012-05-02T15:35:00.001-07:002012-05-02T15:35:22.675-07:00Surprise from GraceSurprise!!!<br />
We are back and in minneapolis and staying at lowery grove RV park in st. Anthony.<br />
We are all doing well. But on our first day here I got sick with a cold and now I am recovering and I have started going back to school. My mom and dad are still looking for a house but I like staying heredtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com2tag:blogger.com,1999:blog-6288426.post-73065197344647932632012-04-25T13:17:00.001-07:002012-04-25T13:23:32.197-07:00Travel update from GraceOur 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.) <br />
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..... <br />
All is well and soon we will be back up in minneapolis.(and I'm preparing for the hot wether.)dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com1tag:blogger.com,1999:blog-6288426.post-47685555214442362952012-03-31T07:00:00.001-07:002012-03-31T07:00:20.752-07:00Housing neededWe 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. dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com0tag:blogger.com,1999:blog-6288426.post-87330913919375930342012-03-27T15:25:00.003-07:002012-03-27T15:25:56.378-07:00Transitioning again...Beginning the preparations of returning to Minneapolis. It's hard to believe we've been here almost four months already!<br />
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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 ;)<br />
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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. <br />
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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!<br />
dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com3tag:blogger.com,1999:blog-6288426.post-33065393257319034352012-02-29T14:02:00.000-08:002012-03-01T08:46:01.833-08:00Long overdue updateFirst 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.)<br />
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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.<br />
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Finally on the physical front, my walking is only done in short distances -- and always with the walker. <br />
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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.<br />
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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.<br />
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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.<br />
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Much more to say but I've been at it for over an hour and want to get this posted.<br />
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dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com4tag:blogger.com,1999:blog-6288426.post-28740673281361336342011-12-22T06:52:00.001-08:002011-12-22T06:52:04.693-08:00Space CoastedWe 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.<br />
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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.<br />
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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.<br />
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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.<br />
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Here is wishing you and yours a Merry Christmas, Happy Hanukkah and pleasant holidays however you choose to celebrate! dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com9tag:blogger.com,1999:blog-6288426.post-59025625801453231772011-12-08T14:41:00.001-08:002011-12-08T14:41:48.505-08:00Migration BeginsWe 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.<br />
<br />
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.<br />
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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...<br />
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Lily has just been transferred to the RV -- a sign that departure is eminent. dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com3tag:blogger.com,1999:blog-6288426.post-91012468731765794222011-11-30T08:23:00.001-08:002011-11-30T16:39:25.761-08:00Nov 30 updateThanks 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.<br />
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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.<br />
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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.<br />
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Not a great week at Anderhaus, but we persevere and long for the warmth of Florida.<br />
<br />
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".dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com5tag:blogger.com,1999:blog-6288426.post-83972822395272162122011-10-21T08:45:00.000-07:002011-10-21T08:45:20.764-07:00More on Sodium ChloriteI have received some emails and comments regarding oral Sodium Chlorite. I wanted to post responses here for visibility.<br />
<br />
First, this is NOT MMS. The concentration we are using is much lower and the activation is different.<br />
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The ingredients are 5% Sodium Chlorite solution (aka Stabilized O2 <a href="http://keavyscorner.com/index.php?main_page=index&cPath=65">here</a>), 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:<br />
<br />
<a href="https://sites.google.com/site/alschlorite/">https://sites.google.com/site/alschlorite/</a><br />
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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.<br />
<br />
If you have any questions or want to triple check your mixture, I highly recommend posting your mix on the als.net Forum here:<br />
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<a href="http://als.net/forum/Default.aspx?g=posts&t=49413">http://als.net/forum/Default.aspx?g=posts&t=49413</a><br />
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There are many helpful individuals there that are more than happy to help.<br />
<br />
Also, please track your results using the templates provided so we can all benefit from the trial.<br />
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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.<br />
<a href="http://www.blogger.com/blogger.g?blogID=6288426"></a>dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com1tag:blogger.com,1999:blog-6288426.post-45368561709584481932011-10-17T16:46:00.001-07:002011-10-17T18:33:33.203-07:00Something wonderful is happening...<a href="http://www.blogger.com/blogger.g?blogID=6288426"></a><br />
<div>
<br /></div>
<div>
<div class="p1">
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.</div>
<div class="p2">
<br /></div>
<div class="p1">
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. </div>
<div class="p2">
<br /></div>
<div class="p1">
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.</div>
<div class="p2">
<br /></div>
<div class="p1">
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.</div>
<div class="p2">
<br /></div>
<div class="p1">
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.</div>
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<br /></div>
<div class="p1">
Lots to digest, so I'll leave you with 3 links should you care to dig in:</div>
<div class="p2">
<br /></div>
<div class="p1">
<span class="s1"><a href="https://sites.google.com/site/alschlorite/home">https://sites.google.com/site/alschlorite/home</a></span> is the online home for people involved. My detailed log can be found here. </div>
<div class="p2">
<br /></div>
<div class="p1">
<span class="s1"><a href="http://als.net/forum/Default.aspx?g=posts&t=49413">http://als.net/forum/Default.aspx?g=posts&t=49413</a></span> is where the bulk of the research and discussions are taking place.</div>
<div class="p2">
<br /></div>
<div class="p1">
<span class="s1"><a href="http://www.patientslikeme.com/">http://www.PatientsLikeMe.com</a></span> has further discussion and tracking of this DIY trial.</div>
</div>dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com6tag:blogger.com,1999:blog-6288426.post-77963544509519744062011-10-04T15:30:00.001-07:002011-10-04T15:30:33.234-07:00August 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.<br />
<br />
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.)<br />
<br />
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.<br />
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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.dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com2tag:blogger.com,1999:blog-6288426.post-49101134385358155792011-09-30T07:08:00.003-07:002011-09-30T07:12:35.677-07:00ALS treatmentsMy 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<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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! dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com3tag:blogger.com,1999:blog-6288426.post-18369919523015014042011-08-03T13:02:00.000-07:002011-08-03T18:43:34.512-07:00Watchin 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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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!dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com1tag:blogger.com,1999:blog-6288426.post-74134887477617542522011-07-26T16:05:00.000-07:002011-08-03T12:48:18.648-07:00NP 001I've recently begun the process of getting into my 1st clinical drug trial. This trial is for <a href="http://clinicaltrials.gov/ct2/show/NCT01091142">NP001</a> 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. <br />
<br />
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. <br />
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Looking at the reports at <a href="http://www.patientslikeme.com/">PatientsLikeMe.com</a> 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.dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com4tag:blogger.com,1999:blog-6288426.post-16640093466682216252011-07-26T15:26:00.000-07:002011-08-03T13:05:05.948-07:00DTA's Healthy Hash (TM)<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh27LhOcHvSFW1V2r_qLcq-L_E88olhEJ2LyGvb2S51nzbQ-mG6v4ea9oJsTHLhiBMHaoghzV4tcXN2TxBWfMdAHomxe7eCxBeFUEgp6YSSwT71OZ_c6bnfigOhPR0r_Yc7UKwR/s1600/hash.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="320" width="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh27LhOcHvSFW1V2r_qLcq-L_E88olhEJ2LyGvb2S51nzbQ-mG6v4ea9oJsTHLhiBMHaoghzV4tcXN2TxBWfMdAHomxe7eCxBeFUEgp6YSSwT71OZ_c6bnfigOhPR0r_Yc7UKwR/s320/hash.jpg" /></a></div><br />
Brain-health essential ingredients:<br />
olive oil <br />
garlic <br />
ginger<br />
onions<br />
carrots<br />
celery<br />
cilantro<br />
parsley<br />
protein <br />
<br />
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.<br />
<br />
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.<br />
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For the last minute or two of cooking add finely chopped cilantro and parsley -- the more the better, think Cobb salad.<br />
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Serve over rice.<br />
<br />
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!dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com0tag:blogger.com,1999:blog-6288426.post-64250385212555073592011-07-12T16:59:00.000-07:002011-07-12T16:59:12.369-07:00Time with the familesJust completed back to back celebrations with family of origin followed by family of choice.<br />
<br />
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. <br />
<br />
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. <br />
<br />
I am blessed, inspired and grateful for all of my family.dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com0tag:blogger.com,1999:blog-6288426.post-83956516475976594102011-06-28T17:22:00.000-07:002011-08-03T12:48:18.649-07:00Doin the Herxy Jerky againThe 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 <a href="http://detah.blogspot.com/2011/01/20-down-20-to-go.html">another</a> Herx reaction.<br />
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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.<br />
<br />
Did better today and was preemptive about laying down, that helped a lot.dtahttp://www.blogger.com/profile/01721544793596701966noreply@blogger.com0