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.