Reality set in as we drove away from our nice weekend at Barbara’s ranch. I had just been told that I likely had between 2 and 5 years to live and that I needed to get my financial and person affairs in order. I kept wondering if it would be closer to two years than five years and what the final years would be like.
Although I would soon be going back to the Mayo Clinic for further testing to rule out any other possibilities, there was little doubt in my mind that I had ALS. Even if it turned out to be something else it was very serious and I needed to prepare for the worst.
Betty asked me if I was going to continue working as long as I could physically manage or come home. It was a difficult decision because we needed the income as Betty had just retired after 38 years of teaching public school 3rd grade. But I wanted to spend what time I had left with Betty instead of seeing her several weekends a month because of my long distance city planning work. I had already thought about this since my initial diagnosis so I quickly turned in my resignation to the Town of Apple Valley, California and helped Betty move from our long time home in Merced, California to our new home in Santa Fe, New Mexico.
Sadly, those with fast moving ALS symptoms find themselves in a daily crisis situation from the time of their diagnosis. Because my symptoms were moving slowly, at least for now, and having quit my job I was able to focus full time on my new reality.
What do you do when hope fades and you are left with the belief that there will only be suffering and struggling and no matter what you do, everything will will just continue to get worse.? The only thing I knew to do was to remain optimistic and move forward.
So, I immediately accepted my situation and got busy planning for the future. My goal was to keep as high a quality of life as long as possible and hopefully during that time an effective ALS treatment and eventually a cure would be developed.
I had already decided that my way forward would be a journey instead of a battle and that I would think of it as living with ALS instead of dying with it. In short, I needed to adjust to this new reality, decide what was most important to me and begin to transform myself as best I could.
Acceptance, gratefulness, hope and thoughtful action have been my guiding principles though out this journey. It is what it is, I am grateful for what I have been able to do and what I still can do, there is always hope and I try to do my best. I strive for happy moments each day and it is important for me to contribute to the greater good for all living beings.
During the next few months, I read as much as possible about ALS, I asked the advice of many people and began considering various approaches. I also got a clear picture of our financial situation and checked to see how we needed to update our estate plan documents, including my healthcare directive. Our local Social Security office was helpful in getting me qualified for medicare and short-term disability benefits. I began learning about the importance of attending a certified ALS Clinic and the benefits of local ALS support groups.
I assembled a wonderful medical and wellness team. Dr. Ross, my neurologist at the Arizona Mayo Clinic, and my local physicians also provide excellent medical care. However, since ALS has no effective conventional medical treatment, I have turned to alternative and complementary medicine, including Dr. Herscu, my naturopathic doctor and Amchi Leksang, my Tibetan traditional medicine doctor. No one has offered me false hope and together we are trying to maintain a high quality of life as long as possible.
My focus has been on wellness, healing and transformation. Over the past 13 years, I have worked with physical therapists, massage therapists and those skilled in meditation, breathing, energy flow and different types of body, mind and spiritual work. Rabbi Michael Lerner has described healing as a physical, emotional, mental and spiritual process of coming home.
I learned from Jenny Odell how easy it is to allow our attention economy and technology to distract us from seeing what is going on with ourselves and our world. I am focusing more on radio programs such as NPR’s New Demensions and Living on Earth instead of daily news related programing. My emphasis is on being happy instead of being right and spending more time with solutions based publications.
Most important, I try to stay calm while becoming more aware and present in the moment.
The emerging field of positive psychology focuses on what makes life worth living rather than treating anxiety, depression and cognitive decline. It has been shown that a small change in one’s perspective can lead to major shifts in one’s well-being.
I have explored alternative and complementary approaches such as acupuncture, kinesiology, electro-magnetic stimulation, aromatherapy, visualization, medical cannabis, therapeutic horseback riding and cranial therapy.
My daily breathing and physical exercises, body and mind work, stress-management techniques, along with diet and supplements have made a huge difference. See Appendix A for list of my wellness routine. In the beginning, I used it as a checklist. Now I use it more as a guide and let my body and the day’s flow determine what to spend time on. Each person should try different things and see what works best for them.
Since there currently is no effective treatment for ALS or even an understanding of what causes the disease, many people with ALS (PALS) and their families are so desperate that they try treatments promoted on the internet that are unproven and sometime unsafe. There are many well-informed doctors to rely upon for traditional medicine treatments, but we are on our own when seeking information regarding alternative or “off label” treatments.
Fortunately Dr. Richard Bedlack, a neurologist at Duke University and director of the Duke ALS Clinic created ALSUntangled that has published more than 50 scientifically researched reviews of alternative ALS treatments. The ALSUntangled website includes an easy to understand summary and complete review for each alternative treatment review. ALSUntangled is currently attempting to identify possible treatments based on things PALS have done whose ALS symptoms have gone into remission.
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