One Father's Extraordinary Journal of Living Longer with ALS
Gaining Strength and Counting Blessings

It’s been a good week! Last September, as I may have mentioned in an earlier post, an aggressive increase in one of my treatments caused me to lose about 90% of my already limited hand and forearm function. There were days when I could not move the joy stick that controls my wheelchair. Thanks to some adjustments in the treatment, continued detoxing, my nutritional and exercise programs, emphasis on affirmative thinking, the work of my healer (Jose), and good old perseverance, my arms and hands are completely back to where they were, and continuing to gain strength. I am even noticing additional strength in my shoulders and neck. It all became more noticeable this past week as I began to take easier and more extended strolls around the neighborhood.

Gains like this, of course, are what doctors will tell you are impossible for a person with ALS. And, if I am successful in continuing to reclaim mobility, doctors will most likely proclaim that my recovering from ALS is a miracle, and will ignore what I have done to achieve it. I am convinced that this will be the likely response from the medical community, because I have read and heard so many stories like it. This is one of my motivations for continuing with this blog – to get the word out that there are effective strategies outside of the traditional medical model that a person with ALS can use to fight it.

Another reason it has been a good week is that a reporter from a local newspaper put out an article on my story, providing further exposure for my successful battle against this disease. You can find the article, “Local man with Lou Gehrig’s disease beating odds,” at the following link www.mycentraljersey.com/apps/pbcs.dll/article?AID=20106220302. Please let me know what you think of it.

It can be a lonely battle at times, searching for effective, non-traditional healing practices that work in the face of the sometimes patronizing and skeptical attitudes, and lack of interest one often experiences from medical professionals. Each time I experience a gain like my recent increase in strength, I count my blessings that my perseverance has paid off, and hope that my example somehow benefits others with ALS or other difficult challenges.

Please let me hear from you.

Comments (1)

When you lose 90% of your ability to move, it can have a dramatic impact on your self-perceptions and your expectations about what you can do to have an impact on your world, and enjoy your time in it. As a management consultant (http://www.guttmandev.com/), I was accustomed to using gestures and my voice to teach people how to communicate and influence each other more effectively. Those capabilities are now gone. My arms can barely move and my voice is too weak to produce words with the volume, inflection and tone of which I was once capable. As a parent, I can no longer comfort my children with an embrace or speak to them clearly and quickly enough to offer efficient guidance. Favored recreational activities like tennis, hiking, and skiing are, at this point, only pleasant memories. It would have been easy, given these developments, to view myself as less of a human being, a mere remnant of the person I once was, now dependent on others’ arms and legs for the satisfaction of virtually every physical need. I am certain that accepting this view would surely have put me in the grave by now, and robbed me of further contributions to the world.

There are many factors that helped me to avoid this nightmare, many of which are discussed in my book. Ultimately, I had to shift my perspective, not so much about who I was, but how I might deliver my unique contributions to the world around me. There were several other perceptions that had to shift in order for me to reach that point. First, I had to reframe my understanding of my expectations for ALS. When the doctors told me that there was no cure, and the disease must always end in death, what I chose to hear was “I have no idea how to treat this illness.” This reframing led me to search for alternative methods of healing.

Another shift I had to make was away from the notion that I could not influence people without my arms, legs and voice intact. I began to notice that people were reacting to the way I was handling adversity. Through technology, I could still reach people with my words. By taking on the challenge of recovering from ALS, I could share what I was learning about coping with adversity through the computer.

Through the combination of: strong will; clear intention; the love and support of friends, family, and caregivers; the use of technology; the benefits of alternative healing; and reframing how I see myself and my abilities, I regained my capacity to do what I have always done – teach people how to be more effective in what they do and how they contribute to the world.

ALS has given me the opportunity to understand more deeply who I am and what I have to offer. It has also enhanced my creativity in how I go about it. By taking away my physical movement, it has forced me to find other ways to enjoy the world around me. Though I can no longer hike or ski, I have learned to employ bird watching as a way to preserve my connection with nature. By reframing how I connect with, contribute to, and enjoy the world around me, I have turned my nightmares into miracles.

Please don’t forget to comment on this post!

Leave a Comment