Sunday, October 28, 2012

My final project

I 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.

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.

It is also unfortunate that the hardware itself is generations old, quite under powered and the software is buggy and incomplete.

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.

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.

Fortunately I will be standing on the shoulders of modern operating systems and platforms, the DIY communities like, open source projects from groups like Cambridge University Inference Group and websites like

I am also blessed to have an amazing community of family and friends to support me in this en devour. The 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.

My deepest gratitude to Harley, Pete, Hamil and the campaign backers for executing and funding this critical first step.

Please pass along this post and/or the Kickstarter site to anyone that might be interested in supporting this en devour.

Thank you.

Thursday, October 11, 2012

Today 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.

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.

Of course, the recent tracheostomy was another step on the path to longevity.

But here are some highlights of the last 24 months:

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.

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.

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.

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.

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.

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.

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.

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.

In the fall I started working with the Tobii
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.

I started the Oral Sodium Chlorte trial around this time; initially with promising results, but unfortunately short lived.

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.

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.

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.

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.

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.

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.

So now we have found our house and are in the process of adapting it for our needs.

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.

Thank you.

Monday, September 10, 2012

The 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.

But, wow. What a giant shift for me, my family and community.

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.

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.

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.

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".

Google it...

Tuesday, August 07, 2012

A 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.)

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.

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.

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.

Thursday, August 02, 2012

A little catch up is in order, I'll try and fill in some blanks left since leaving Florida.

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.

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.

It was also where I started having difficulty sleeping because of choking on saliva as my throat muscles weakened.

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.

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.

Fortunately Keya had recently returned from a vision quest, so had some amazing things to share.

Next post I'll pick up with the trach...

Monday, July 09, 2012

An update: ghost-written version

It'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.
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.
The surgery while ending verbal communication has aided the ability to sleep without choking which is a great improvement for both health and spirits.
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...
David demanded that I mention my book, "A Rose by Any Other Name" but I'm not going to do it...
ps -he also insists that i mention the book is available through amazon and kindle...

Thursday, May 17, 2012

We are in our new apartment

We found a place in downtown Minneapolis right off Loring Park. It's a nice place for us for the next three months.

We are now fully engaged in our house search. Similar needs as the apartment, let us know if you have any leads.

Our new address is 1300 Yale Place, apt. 232, Minneapolis 55403.

Thank you Maiya for helping with this entry.