Monday, December 20, 2010

A Tough Couple of Weeks

During my ten years of living with ALS, I have had some difficult days both physically and emotionally. Periods of illness (beyond the symptoms of ALS) have rarely lasted more than a day or two. For the past two weeks however, I have been struggling with symptoms of hypothermia that have taken my normally cold-sensitive body to new levels of chills. No one in the circle of medical professionals, who regularly visit me, seem to have much in the way of suggestions for cause or treatment beyond what I have already figured out for myself. Compounding the situation is what appears to be a continued deterioration of my epiglottis, making keeping food and water out of my trachea an increasingly difficult process. As a result, I am experiencing weight loss, dehydration, and coughing fits that can last for more than a day. After winning a battle to clear my throat of misplaced food particles, the battle often resumes with the next meal. All of this is very draining and saps my strength and energy for operating my wheelchair, toothbrush and computer.

In previous posts, I have written about the power of choice and the human will, the concept of surrender, the importance of a positive outlook, and other lessons I have taken from my illness. During this recent challenge, the strength of my will has been tested and the wisdom of my choice brought into question. There are moments as I write these posts when I ponder how many readers find me inspiring or just full of myself. If I am anything less than honest about my struggles as well as my victories, then the guidance that I try to offer on handling adversity becomes less meaningful, if not hollow.

So, I want to level with you that the weight of current difficulties has been extraordinarily challenging. They have generated thoughts that have not pierced my consciousness for years. I have found myself thinking on several occasions, “I am going to die”. Please don’t misunderstand. I have not given up, as these thoughts are quickly followed up by the thought, “Someday”. The point is that the battle between positive and negative thinking has been fiercer and more frequent of late.

One step that I have been considering more strongly than in the past is the idea of a feeding tube. Beyond the psychological blockage of having an artificial device sticking out of my body, I have three medical issues that I need information about to make a decision. First, I am concerned about the risk of infection from long-term use. Secondly, I am concerned about the possibility of regurgitation, which could pose a greater risk of aspiration than continuing without the tube. Finally, I need to know if it is possible to continue a vegan diet using smoothies and juices through the tube, which would provide far better nutrition than the formulas normally recommended. If any of you have the experience, either direct or indirect, to offer insight on any of these issues, I would greatly appreciate hearing from you.

Friday, December 10, 2010

An Inspiring Role Model for Dealing with Adversity

A few days after I wrote my October 23rd posting, “An Unfortunate Case of Myopia”, a friend of mine contacted me on Facebook to ask how one would go about encouraging the sources of research funding to channel some of that money to investigating effective non-traditional treatment for ALS. At the time, I did not have a very good answer, but within a few days, as if on cue, one was provided to me. Here is what I wrote to him: You could contact ALSA and MDA and suggest that they support Dr. Craig Oster’s efforts, and/or contribute to his campaign to develop research on holistic healing for ALS directly at

Dr. Craig Oster has been living with ALS for 16 years. By maintaining a positive mindset and an unshakeable conviction that he is recovering from ALS, he has made some incredible progress with his healing. He has regained muscle (a feat claimed by neurologists to be impossible), and is currently able to bench press over one hundred pounds. His holistic program includes a focus on mind, body and spirit, and is worthy of consideration for anyone interested in improving their wellbeing, not just people with ALS.

Similar to my own experience, Dr. Oster has found it difficult to interest mainstream doctors in anything other than pharmaceutical treatment of ALS. Convinced, as I am, that he has found successful alternative means of dealing with this disease, he has pulled together a team of professionals and people with the illness to begin his own research efforts on holistic treatment of ALS. His website already includes stories of several other people who have made progress in combating this disease.

Dr. Oster’s efforts provide hope for tens of thousands of people who have been given a death sentence by the mainstream medical community bound in the belief that their paradigm is the only credible one for healing. From a broader perspective, however, this man serves as an inspiring role model of courage, perseverance, and focused determination. Are there people like this in your life? Please share your stories.

Tuesday, November 30, 2010

Surviving a Perfect Storm

Tomorrow, my live-in aide, Jimmy, will be starting a well deserved ten day vacation. Knowing how difficult it can be to find an acceptable replacement, he gave me plenty of advance notice. About six weeks ago, I was lucky enough to secure the services of a former aide who was familiar with my condition and routine. Unfortunately, he backed out on me three days before Thanksgiving, leaving me with less than two weeks wrapped around the holiday weekend to find a replacement.

We pulled out all the stops and put together a variety of coverage plans. My first step was to call my care manager, Bonnie, to find candidates for the position that I could interview as soon as possible. I also put out emails to my friends and congregation looking for people who could fill in some hours, so that I could put together a schedule of potential care givers. This second option of using friends was also dependent on being able to move Lloyd’s (my afternoon aide) hours to the morning in order to have someone available who was able to move me out of bed and through my toileting and dressing routine. The third option was to temporarily move me into a nursing home, a last resort that I really hoped to avoid.

After interviewing three aides, I was unable to find one that was capable of performing both of the two most critical tasks – transferring me and understanding my “ALS accent”. Offers from friends began to pour in to cover multiple four hour shifts. Unfortunately, there were not enough people available to cover the daytime hours. To make matters worse, my good friend, Gil, who is often available to assist me in situations like this was recovering from surgery and unable to help. It is my wife’s busiest time of the year with her high school choir concerts keeping her out until late at night multiple times per week, and my children’s schedules would be keeping them out of state during the time Jimmy would be away. As if this wasn’t enough of a challenge, it turned out that there was no room for me in the nursing homes.

On the day before Thanksgiving, I was down to my last, although best option, and had one more health aide to interview. My last hope was a 19 year old Lithuanian, named Will, with only a year of experience. As it turned out, that year of experience included a client with physical limitations similar to mine, and Will was able to transfer me with ease, and understand me better than most people. I was saved, and Jimmy was able to continue with his vacation plans with peace of mind.

The most remarkable part of this experience for me was that I was able to remain fairly calm and focused throughout the ordeal, while those close to me were displaying higher levels of concern about how the situation might not work out in my favor. By staying in the moment, remaining calm, feeling grateful for the groundswell of support coming from my friends, and doing what was necessary, I weathered the storm, found the resource I needed, and averted a crisis. Living with ALS has taught me time and again how being in the moment, gratitude, and focusing on what you can control or influence can contribute to transforming difficult challenges from nightmares to miracles.

Have you had similar experiences? Please share them.

Friday, November 5, 2010

More on Medical Myopia and ALS

In the past 7 years, I have done a great deal of detoxifying to rid my body of all kinds of pathogens. Using chelation, the lemonade cleanse, sound therapy, dietary changes, a product known as MMS (Miracle Mineral Supplement), and a variety of other products and techniques, I have eliminated heavy metals, parasites, viruses, bacteria, pesticides, and other pathogens from my body. Traditional medical practitioners will often dismiss these invaders of the body as irrelevant. Doctors will tell you that it is normal to have a variety of these pathogens in your system. They will say that in the absence of any symptoms of illness there is nothing to worry about. It amazes me that in a country with one of, if not the highest incidence of chronic and terminal illnesses in the world, there are still so many doctors who refuse to look beyond their own medical paradigms for solutions to their patients’ maladies where their traditional practices fail.

I am currently searching for a way to eliminate a moderate candida condition (a fungal infection) in my gastrointestinal tract. Alternative treatments I have tried have not been successful. The pharmaceutical products that I have explored pose too much of a threat to my kidneys and liver. Three doctors have told me that the candida is probably not worth worrying about. The effects of candida, however, may include mental impairment, headaches, fatigue, and digestive difficulties. In patients with compromised immune systems it can even be fatal. See The Effects of Candida.

In the case of ALS, there is little conclusive knowledge about the cause of the disease, let alone the treatment. So, on what basis can a doctor legitimately claim that eliminating a candida infection will be of no benefit to someone living with ALS? From a holistic perspective, it makes sense to eliminate any pathogens that may be compromising the body’s ability to function at full strength. Consequently, I will continue to search for a solution until I find something that works.

A man named Eric Edney is one of the most successful people that I have encountered in recovering from ALS. Eric has been living with ALS for twenty years, and has managed to reverse many of his symptoms. In the “Regimen Outline” on his website, he mentions fungi (of which candida is an example) as one of the pathogens that he believes should be eliminated from the colon. See Eric is Winning. Eric is fortunate enough to have found an open-minded doctor to support his efforts to heal from his “terminal” illness.

Too many doctors, unfortunately, are still unwilling to engage in potential solutions beyond their formal training. This medical myopia is certainly not serving people with ALS and other serious medical conditions very well. With the growth of interest in alternative practice and the high rates of chronic and “terminal” illness in this country, it seems to me that it is in the best interest of the traditional medical community and their patients for them to rethink their practices. Your thoughts?

Saturday, October 23, 2010

An Unfortunate Case of Myopia

When a motor neuron specialist determines that you have ALS, he or she will typically try to soften the blow by telling you something like “everyone is different … some live ten years or more… research is going on all the time to find effective treatment or a cure… don’t lose hope.” No matter how they try to sugarcoat it, the message of their underlying belief is always inescapable, “You gonna die!” The power and the impact of this message lie in how the patient chooses to hear it. Initially, the impact on me was devastating.

As I learned more about alternative medicine, I came to realize that the physicians who had diagnosed me were speaking from within the limits of a paradigm that shaped their beliefs. Eventually, I came to realize that when a conventional medical practitioner said to me, in whatever way the words were disguised, “You gonna die”, what he or she was really saying is “Within my knowledge base, I have no idea how to fix this.” Choosing to hear the message in this way opened up the possibility that another paradigm might be able to lead me to a solution.

My first exposure to alternative medicine was at the Kessler Clinic in Victorbur, Germany. It was there, under the care of Dr. Wolf-Dieter Kessler, that I first learned about functional medicine. This practice treats each person as an individual, seeks to determine the root cause of ailments rather than treat symptoms, and attempts to unleash the body’s natural ability to heal by removing obstructions and imbalances. The tools of functional medicine may include homeopathic remedies, vitamins, herbs, reflexology, medical equipment that uses frequencies to diagnose and treat pathogens and allergies and other conditions, kinesiology, and much more. If you would like to learn more about the tools and practice of functional medicine, visit Dr. Kessler’s website.

Dr. Kessler never promised me a cure, but he did express confidence that he could slow the progression, and I believe he did. In addition, the knowledge base I developed during the three-and-a-half years under his care helped me to become a better consumer of alternative health care. I am convinced that without that knowledge I would not be sitting here writing this blog. During my six visits to the clinic I met many people with various “terminal” illnesses who had given up on traditional medicine to find unexpected cure or improved health and extended life expectancy through he treatment they received there. My experiences there made me a believer in functional medicine and alternative practices as a whole.

Over the past twenty years there has been a significant increase of interest in holistic and alternative medicine. See Complementary and Alternative Medicine Facts. As a result, many traditionally trained doctors have formed complimentary practices in which they combine the use of conventional and alternative methodology. Still there are many other doctors who refuse to look into alternative therapies even when traditional approaches have little to offer. They claim they don’t have the time, or they assume that all alternative practices are quackery without even bothering to learn something about them. When they do look into an alternative approach they tend to evaluate on an all-or-nothing basis, meaning that if the technique doesn’t cure a disease all by itself, they conclude that it is worthless.

I am not opposed to conventional medicine. If I had a broken leg, I would not hesitate to seek out the services of a good orthopedist. But traditional medicine relies far too much on surgery and drugs, even when it makes matters worse, and when a more holistic approach could serve the patient much better. For a good example, see Mark Hyman, MD: Is There a Cure for Autoimmune Disease? .

Far too many motor neuron specialists are content to help their ALS patients be as comfortable as possible while they waste away. They offer them Riluzole in the hope that it might extend life a few weeks or months, if it doesn’t damage the liver first. They support research to find drugs that will do more than Riluzole, but I have not found a single study examining the common therapies (conventional or alternative) that might provide some insight as to what is keeping the few hundred of us alive who have been living with ALS for more than ten years. This unfortunate case of myopia is costing people quality of life, longevity, and possibly life itself. It’s time to wake up and start using some of the research money where it may do some immediate good. It’s time to try some new approaches, and challenge conventional wisdom. People’s lives are at stake!

What do you think?

Sunday, October 3, 2010

Mercury, Heavy Metals, and ALS

When I was just beginning to explore alternative treatment for ALS, a practitioner recommended that I have my amalgam fillings replaced with a compound that did not contain mercury. His reasoning was that there was a well established link between mercury poisoning and neurological disease, and amalgam fillings are a key contributor to mercury poisoning. I took his advice.

The motor neuron specialist I was seeing at the time was less than encouraging about my decision. Since removal of mercury from the body had not cured or visibly slowed the progression of ALS in the studies he had read, he saw no value in replacing the fillings. His response is typical of the myopic view taken by many motor neuron specialists – if it isn’t a drug or surgery, it’s not worthy of their attention.

From a holistic perspective, my decision was a no brainer. It doesn’t take a medical degree or a genius to figure out that someone with a neurological illness should be diligent about avoiding and removing mercury. Telling someone with ALS to ignore their mercury levels is like telling a person with lung cancer not to stop smoking, because the degree to which the smoking is contributing can’t be determined. Yet, the doctors continue to ignore it. I even attended one neurology clinic where they served tuna sandwiches to their ALS patients for lunch! For those of you who may not get the irony, tuna has one of the highest mercury contents of any fish on the planet.

Following my first heavy metals urine analysis test, I was shocked to discover how much mercury, lead, cadmium, and other heavy metals I had been carrying around. It took about two years and three different approaches to get it all out. I used intravenous EDTA, oral DMSA, and sound therapy. Of the three, I found the sound therapy to be the quickest and most effective. Unfortunately, it is hard to find a good practitioner, it is expensive, and insurance won’t cover it. Was it worth it? I can’t prove it, but I doubt I would still be here, living with ALS for more than 10 years, had I not removed these toxins from my body. If you still need convincing about the ill effects of mercury and other heavy metals, check out this link: "Neurological Effects of Mercury Exposure". The article cites numerous studies linking heavy metals to ALS, Parkinson’s, MS, autism, and other neurological illnesses.

Please share your thoughts and experiences on this topic, and if you happen to know a good motor neuron specialist who is open to alternative and holistic practice in or near the central New Jersey area, please let me know.

Monday, September 27, 2010

Did I Go Too Far?

Recently a friend flattered me with a request to incorporate my August 13 post, The Power of Will in Handling Adversity, into her monthly newsletter article. She raised a concern, however, that some of her readers might find a particular point offensive, and asked me if I’d be OK if she modified it. Her query got me to wondering if I had perhaps gone a bit too far in stressing the importance of power and will.

The section that gave her pause was the following:
“the bottom line is that both (power and will) are required for success. This is not just an issue for people with serious illnesses. People who live in a mentality of wishing, hoping, and wanting to lose ten pounds never achieve their goal until they commit to a change in behavior. The same holds true for the unemployed in a bad economy. Those who succeed in finding jobs are most often the ones who believe in their ability to do so, and are committed to doing what is necessary to achieve their goals.”

Her uneasiness stemmed from the possibility that someone who was out of work might feel as if they were being blamed for circumstances beyond their control. After kicking it back and forth a few times, we came up with the following alternative:

“the bottom line is that both are required for success. The good news in this observation is that there are people out there demonstrating what it takes to succeed in difficult times. A choice can be made to learn from their techniques, adapt new approaches, and achieve more success. Whether it has to do with fighting an illness, losing weight, winning a job, or confronting some other challenge, choice and will are always at play. They can define the limits of our success, or the potential of our opportunities.”

As we wrestled with the issue my response to her included the following:
“My life's work is largely about waking people up to their potential, and the possibilities beyond their self-limiting beliefs. ALS has taught me something about my own self-limiting beliefs, and it has pushed me to rise above them. Sometimes people need to be challenged. Sometimes they need to face the truth. "Choice" and "will" are more than just words. They are about responsibility and commitment to change. They are what make the difference. As long as people allow themselves the "out" that circumstances are "beyond their control" they set themselves up to abandon their responsibility and their power. The issue of a circumstance being beyond someone's control is irrelevant. The only thing that makes a difference is how one chooses to step up to the challenge.”

While writing these words, I felt a surge of emotion that amplified for me just how strongly I felt about making commitments and exercising choice and will. In living with ALS, I have had to commit to practices that many would shy away from in order to preserve my life and maintain the possibility of recovery. During my career as a management consultant, I met a wide range of people, some of whom were as strong-willed as I, and many who were not. As part of the work, it was often necessary to provide emotional support to people trying to implement or respond to difficult changes. Whether my clients were strong-willed or not, it was always a balancing act to be sensitive and understanding while challenging them to reach higher and accomplish more than they thought possible. It was in this spirit that I wrote the original words in the August 13 post. Do you think I went too far? I’d love to hear your thoughts.

Friday, September 3, 2010

The Challenge of Anticipation

One of the components of my treatment plan is acupuncture. I normally go to a doctor of Chinese Medicine twice a week for these treatments. After each session, I almost always feel a noticeable boost in energy which usually results in more hand strength for controlling my wheelchair. For the first couple of years my body had difficulty holding on to the energy gains from session to session, making it difficult to sustain any real progress. In consultation with Dr. Xie, I determined that a major deterrent to progress was the levels of toxicity in my body. Over time, as I detoxified, we began to observe very small incremental improvements in energy flow.

This summer, due to some logistical complications I took an extended break from these treatments. During that time, my healer, José, reported that we had made significant progress in cleansing the toxins from my body and are now focusing mostly on building strength. All summer long, José has been lamenting the hiatus from acupuncture, feeling that we were missing an opportunity for accelerated healing. So, when I told him that I was starting up again, José was very excited. At the end of my second treatment this morning, Dr Xie was pleased to inform me that my energy held up over the summer, giving us a solid basis for continued improvement.

While this is all very good news, the changes from José’s and Dr. Xie’s work are so incremental that it is difficult to observe in the short term. It is only when I look back over several years that I can be confident of the positive results achieved from the various treatments I have employed. There have also been many disappointments along the way. So, although I have great confidence in both José and Dr. Xie, I struggle with anticipation of the results to come.

On the one hand, I don’t want to get my hopes up too high and suffer a crushing disappointment. At the same time, I know that the strength of my belief is a powerful factor in my recovery. It is a true rock and the hard place dilemma. I can look back and find encouragement in achieving increases in energy, weight and hand strength. Yet during that same period, a very slow deterioration in my speech clarity reminds me of the traditional medical community’s assertion that recovering from ALS is impossible. My salvation in the midst of this struggle is my favorite affirmation, “I believe in living in the moment, total present time, and loving the challenges”. The moment I start to anticipate what might be, I am cast into turmoil. As long as I stay focused in the present, I can observe what I have, feel grateful for it, and remain positive about the possibilities for improvement.

How have you dealt with the conflict between wanting to avoid disappointment, and wanting to think positively about your chances for success?

Sunday, August 22, 2010

Every Day a Gift, Every Day a Choice

During my life before ALS, the thoughts that often filled my mornings had to do with things like how quickly I had to be out the door, which clients I’d be seeing that day, which projects had to be addressed, which planes or trains had to be caught, what office work needed to be done, and when I could fit in a workout. These days, my focus is quite different. As Diane scurries around our bedroom preparing to begin her day, I am slowly stirred to consciousness. The first thing that usually captures my attention is the resistance of my left eye to open. Between the overnight secretions of my eyelids and the minor weakening that ALS has achieved over the muscles that control them, most mornings I awaken to the sensation that someone has mischievously crazy glued my left eye shut. In the struggle to free it, the thought often enters my mind that ALS may be winning the battle of the eyelid. Thus, my first choice of the day presents itself. Do I give in to the panic of projection that one day my eyelids may not part, and succumb to the disappointment, frustration, and fear that accompany that thought? Or, do I choose to remain present to the moment, stay calm, and save my energy for opening the eye? So far the latter choice has consistently served me well.

Having won this battle, and achieved a little more consciousness, I proceed to the recitation of my gratitude list, taking the opportunity to revel in the gift of another day.. Recounting the many blessings and joys in my life focuses my mind for the day on being present to the positives. And so I begin: “I am grateful for the trees, the shrubs, the grass …,my wife…, children…, family, friends, congregation, caregivers, colleagues, my home,….” After the gratitude list comes a series of affirmations, a series of statements designed also to focus my thoughts in a positive direction. A good resource for learning this process, and designing a list of affirmations that will work for you is Louise Hay’s book, You Can Heal Your Life. My list includes statements like: “I am accepting the abundance of healing energy in the universe, and I am grateful to participate. I believe in living in the moment, total present time, going with the flow, and loving the challenges. I am grateful for the gifts in my life constantly. I live in gratitude and abundance always.”

My list has grown to more than 40 affirmative statements that I have now been reciting every morning, without fail, for the past four years. Sometimes, I have completed the list by the time my health aide, Jimmy, enters the room with a cheery “Good morning, Joe. How are you today?”, as he begins to prepare me for the day. When I have not finished by the time Jimmy arrives, I simply continue silently, as he takes me through the morning paces. If he or Diane has a question or comment, I will address it and then calmly return to my affirmations, always remembering that the purpose is to keep my mind operating in a positive energy field.

Inevitably, thoughts will emerge about activities I used to enjoy in which my body will not currently allow me to participate. Thoughts like these have the potential to drag me into a dark place filled with sadness and other negative emotions, which do not promote healing. Each time my thoughts lead me toward that dark path, I use affirmations to shift my attention back to the gifts and sources of joy in my life. Suddenly, I am noticing the antics of the squirrels, birds, and deer outside my bedroom window that quickly bring a smile to my face. Each time my thoughts drift to the darkness, I am challenged to make a choice about where to put my attention. Living with ALS provides a constant stream of opportunities to make such choices. In order to hold open the possibility of recovering from ALS, or other serious illnesses, experience has shown me the importance of keeping the mind positively focused to promote healing throughout the body. Attending to the mind/body connection has contributed to improvements in my sleep pattern, elimination of chronic pain, and improvements in body functions. So, I work very consciously to enjoy the gift of each new day, and to make choices that promote my healing.

What experiences have you had that demonstrate the health connection between mind and body? Let me hear from you.

Friday, August 13, 2010

The Power of Will in Handling Adversity

About a week ago, I was visited by a new friend with ALS. He came with his wife and brother-in-law (his primary caregivers) to seek advice on dealing with the illness. It was interesting to compare the differences in our conditions. While he has been living a confirmed diagnosis for three years less than I have, his progression is in some ways worse than mine while in other ways not as severe. On the plus side, he still has modest movement in his legs (although not enough to support his weight), and he does not require 24/7 breathing support. On the downside, his speech is very difficult to comprehend, there is no movement in his arms and hands, his weight is very low, and he constantly battles sadness.

In the short time since our meeting, I have exchanged several emails with his wife clarifying suggestions I had offered. These exchanges caused me to reflect on the vast array of remedies and procedures with which I have experimented over the past eight years to arrive at the protocol which is currently keeping me stable and generating modest improvements. Many of these experiments have drawn amazed reactions from friends who could never see themselves employing such tactics - things like a raw vegan diet, lemonade cleanses, coffee enemas, and colema boards (a variation of colonics) to name a few. I have had conversations with several PALS (people with ALS) who came to pick my brain on what has worked for me. Few, however, have committed to the changes or procedures I have recommended, which brings us to the issues of choice and will.

These topics came into very sharp focus for me about four years ago, when an alternative health practitioner named Tom Woloshyn came into my life. One of the first things he asked me was, “Do you want to live or do you want to die?” I was startled. It seemed obvious. I had taken it for granted. Confronted with Tom’s question, I had to ask myself to what lengths I was willing to go. Suddenly it became clear that the potential for success was highly dependent on what I really believed and was actually committed to doing. Tom helped me realize that if I was to have any hope of recovering from ALS, I had to decide whether I truly wanted to live, and how much. In discovering the depth of my will to live, I found the power to choose to employ healing practices to which most people would react with “Are you kidding me!?”

I sometimes ponder which comes first, the strength of will or the power to choose. It seems to me a bit of a chicken and egg question. The choice to do what is necessary to work through a difficult challenge can certainly stimulate the will to succeed. At the same time, the will to succeed, no doubt, drives the choices we make. Which one comes first is an interesting debate for philosophers. In pragmatic terms, the bottom line is that both are required for success. This is not just an issue for people with serious illnesses. People who live in a mentality of wishing, hoping, and wanting to lose ten pounds never achieve their goal until they commit to a change in behavior. The same holds true for the unemployed in a bad economy. Those who succeed in finding jobs are most often the ones who believe in their ability to do so, and are committed to doing what is necessary to achieve their goals.

What struggles and successes have you experienced that demonstrate the power of will and choice?

Friday, August 6, 2010

Surviving ALS – It’s a Matter of Attitude

Let me begin by diffusing the over-simplified implication of the title of this post. Certainly there are many factors that impact how well a person fares with a serious illness. What I mean to suggest here is that an individual’s success in surviving any difficult situation begins with a positive outlook. In several previous posts, I have commented on aspects of this issue. Among them are: “A Tale of Two Nights” (3/12/2010), “The Power of Being Present” (3/19/2010) and “Turning Nightmares into Miracles by Reframing” (6/17/2010).

Whether you chose traditional or non-traditional treatment, it is well documented that patients with a positive attitude generally do better than those without. Norman Cousins’ Anatomy of an Illness tells the story of his recovery from a very serious illness largely through humor and Vitamin C therapy. His book stimulated a rash of studies decades ago that validated the link between a positive outlook and healing. Articles are popping up all the time further validating this link. Here is one from just a few months ago:

Each of my days begins with a series of affirmations and prayers that serve the purpose of starting out with a focus on the positive. Throughout the day, I look for opportunities to keep my attention on the humorous, enjoyable and satisfying. I am constantly thinking about all that I have to be grateful for. As a result, there is seldom a moment of sadness or worry. If there is one thing that living with ALS has taught me, it is that life is too short and unpredictable to waste time in negative emotions. As an added bonus, it often astounds me how much good this attitude attracts to my life. It can be very difficult as I am sure you have experienced, to stay in the presence of someone whose state of mind and behavior are heavy and negative. A light and positive presence on the other hand, nourishes and attracts people. Consequently, I am blessed with a constant flow of caring and supportive people streaming through my life, helping to reinforce the attitude that attracts them, and there are few opportunities to dwell on the negative.

Last week my wife and children (my artistic daughter, Julie, did most of the work) presented me with a gift culminating a month long celebration of my 60th birthday. They had assembled a collection of pictures and messages from friends and relatives, and organized them into a book of tributes and good wishes. They took turns reading to me what people had written and showing me the accompanying pictures. It took more than an hour, slightly extended by my frequent struggles to regain my composure, to get through the book. I felt overwhelmingly grateful and a bit overly flattered that so many people would take the time to say so many nice things about me, and incredibly honored that my children would take the time to assemble such a magnificent gift.

The old saying, “What goes around, comes around”, clearly applies. I am blessed with the many gifts that I receive from others, and those gifts reinforce the attitude that helps to keep them coming. Please let me hear about your similar experiences.

Friday, July 23, 2010

Are We Having Fun Yet?

I wasn’t quite sure what I was going to write about today. Then, a daily challenge of dealing with ALS came through and guided me. One of the facts of life in living with ALS is that at some point, for most people with this disease, your epiglottis begins to weaken, making it difficult to swallow your food without some of it finding its way down your trachea. Along with this, your diaphragm tends to weaken, making independent breathing, and coughing to clear your throat increasingly difficult. For more information about these and other symptoms visit the ALS Association website.

Typically, something will get stuck in my throat during one or two meals every day. Sometimes, it is possible to cough it up in a few minutes. Other times, it can take changes of position, the use of a machine called a “cough assist”, and several hours, before the tiny morsels of food that interfere with my breathing and speaking finally release their grip on the walls of my windpipe. Today was one of those days.

A few tiny pieces of cantaloupe from my morning smoothie refused to give themselves up all the way through my lunch hour. Once the coughing subsided enough for me to be able to eat my lunch, several bits of steamed vegetables decided to join the party. About three hours later, after several prolonged uses of the cough assist, enough of the food particles took their leave for me to be able to carry on a conversation. At this point, I looked up at my afternoon aide, Lloyd, who had been helping me extract the errant remnants of my meals, and said “Are we having fun yet?”.

The harsh reality is that this process is incredibly exhausting and depressing. It is easy to find yourself drifting into thoughts of “enough already”, and to imagine closing your eyes and never opening them again. My best weapon against such thoughts has consistently been my sense of humor. Lines such as “Are we there yet?”, “That was fun!” or “Let’s do that again!”, always shift me, get at least a smile from those around me, and relieve the tension in the room.

Although I believe that I am recovering from ALS, the fact remains that my level of paralysis is characteristic of the advanced stages of this illness. While achieving health gains over the past three years that include skin quality, weight gain, increased energy, and more hand strength, there are still symptoms like a weak epiglottis and diaphragm that test me every day. I believe that recovering from a serious illness or any significant challenge requires healing and/or growth on mental, emotional, physical and spiritual levels. Humor, for me, is one way of addressing both the mental and emotional components of any program for total health. What do you think?

Friday, July 9, 2010

The Passing of a Giving Soul

Monday morning, July 5th, at approximately 11:15 AM, my stepfather, George Rieger, passed peacefully from this world. He had been struggling for several months with heart valve weakness, breathing difficulty, excessive fluid and other complications. While we will miss him dearly, we are relieved that he is finally at rest.

George was one of the most giving people I have ever had the privilege of knowing. He wasn't polished or worldly, and he didn't have much, but whatever he had was yours. He was the type of person who would stop on a dark lonely highway in the middle of the night to help you change a flat tire when everyone else was passing you by. The man had a heart of gold, and was loved by many who knew him. He will be missed.

George lived in Florida, where he was cremated and will be put to rest with my Mom. He told his partner, Joyce, that he did not want any ceremony. Since he was not Jewish, I wasn’t sure that there would be a shiva. After meeting with the Rabbi, I discovered that it would be possible to sit shiva and do a memorial service in honor George's memory. This was a great relief to me. I needed closure. It was a great source of frustration being unable to travel to Florida and be with him during his final days. Although we spoke often by phone, and frequently during the final weeks, it just wasn’t the same as being there with him and letting him feel my love in person.

In addition to the typically powerful emotions that accompany a loss of a loved one, this has become another challenge to overcome in living with ALS. One of the symptoms of ALS is something called “emotional lability”. This means that you tend to be overcome by your emotions much more easily than before contracting the disease. While I don’t consider myself to be an overly “macho” type of guy, I must admit to finding it somewhat uncomfortable breaking down unexpectedly in the middle of a sentence when thinking or speaking about a sensitive topic like the loss of my stepfather. To put this in perspective, the same thing can happen in the middle of a sappy romantic comedy or in response to someone going out of their way to do me a favor. While I have always been a fairly passionate guy, this behavior is considerably more extreme than what I experienced prior to Lou Gehrig’s disease. Sometimes, I just have to laugh about it, because getting upset only makes it worse. I certainly don’t want to lose my sensitivity, but it would be nice to have a little more balance.

This is a time for grieving, and I will allow myself to do so. I look forward to a time when I can look back fondly on my memories of George without feeling so much of the pain of his loss. Regrettably, this is far from my first experience with losing someone about whom I have cared deeply, and I have learned a great deal about grieving along the way. It is however, the first time having to go through this process with advanced ALS. Loss is a process with which we all have to deal sooner or later. I would love to hear some of your stories about what has helped you to get through it.

Friday, July 2, 2010

Return to Cape May

One of the things I have desperately missed over the past several years is our summer vacations in Cape May, New Jersey with our good friends, Joel and Jane Lubin. It was our tradition for nine years, until the energy drain and logistics of travelling with ALS made our rendezvous too difficult. By the summer of 2009, I had regained enough strength, energy and emotional balance to spark interest in trying to resurrect our tradition. After some intense investigation into managing equipment and access to buildings, however, it turned out that Joel and Jane’s vacation house in Virginia was a longer ride but a much more manageable alternative. It was the longest trip we had made in almost four years, but worth every minute. In their typical loving and supportive way, Joel and Jane did everything imaginable to ensure my comfort, safety and access during the five days of our visit. Jane also made sure that I had all the organic produce needed to stay on track with my diet plan, and Joel handled personal care when my aide, Jimmy, took his afternoon walks.

So, instead of watching the porpoises frolic in the surf while sunning ourselves on the beach at Cape May, we watched birds in the backyard while relaxing in their sunroom. We also took in the vistas and wildlife of Shenandoah National Park while driving along the Blue Ridge Parkway. In place of the Victorian architecture of Cape May, we enjoyed the gardens and surroundings at the Glen Burnie House in the Museum of the Shenandoah Valley, and learned more about the area’s history. We ate well, watched movies, talked, and most importantly, thoroughly enjoyed each other’s company. It is hard to find the words to adequately describe how uplifting and enjoyable it was to be able to spend extended quality time with them, and we are planning a return to Virginia next month.

Making this summer even more special, we renewed our rendezvous in Cape May this past weekend. We enjoyed meals together, took in the Victorian ambiance, strolled the boardwalk, and even caught a glimpse of a porpoise or two. Thanks to improvements in my health and the outstanding care and support from Jimmy, my wife, Diane, and Jane and Joel, Cape May has re-entered my life. It is one more example of things that have become possible again as I continue recovering from ALS.

Today is my 60th birthday, an event I never thought I would live to see back in 2003, when a doctor concluded that amyotrophic lateral sclerosis was the reason my right leg had been growing steadily weaker for three years. Refusing to accept the doctor’s belief that ALS must always end in death, I struck off in pursuit of alternative healing. After four years of experimenting, healing strategies that help began to emerge. My purpose in writing this blog is to share with fellow PALS (persons with ALS) what has worked for me, and to provide examples for anyone of how perseverance and positive thinking can help in dealing with overwhelming challenges. My recovery is far from complete, but I grow more confident each day that it is within reach. A recent article in a local newspaper portrays me as someone who is beating the odds. If you’re interested, you can find the article, "Local man with Lou Gehrig's disease beating odds", at :

As always, your comments are appreciated. What examples can you share of how perseverance and positive thinking have turned your nightmares into miracles?

Thursday, June 24, 2010

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 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.

Thursday, June 17, 2010

Turning Nightmares into Miracles by Reframing

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 (, 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!

Friday, June 11, 2010

A Comment, A Comment, My Kingdom for a Comment

When I began this blog last February, I invited my readers to “help me make it a place where people can find hope, inspiration and ideas for dealing with their difficulties…to create a space in which people can find ways to turn their nightmares into miracles.” Initially, I received some very nice comments from friends and relatives encouraging me in my endeavor. After the first few posts however, there have been few comments. My passion for the purpose of this blog is as strong as ever, but it is difficult to know where to take it without feedback. Please help me to determine what is working and what is not by commenting on the posts. Let me know what thoughts you have found helpful, and feel free to share insights that you think might be helpful to others. My intention for this blog was to create an exchange. In order for it to be successful, others have to participate. So please, comment.

Saturday, May 22, 2010

Ongoing Discovery in Recovering from ALS

When attempting to recover from a purportedly incurable and terminal illness, you can often find yourself navigating a very unpredictable path. It is a constant process of discovery. Often times, things don’t make sense, and sometimes you discover that you have taken a wrong turn, and have to double back and try again.

In my work with Dr. Akin and the use of hair analysis, I am able to track the mineral levels in my body. With a nutrient rich diet, comprised mostly of raw organic fruit and vegetables, I would expect to be seeing fairly strong results in my reports. Yet for almost 2 years now, my numbers have been low for minerals that are abundant in the foods that I eat. My copper levels, for example, have been consistently low despite my consumption of an ample number of carrots on a regular basis. Inconsistencies such as this have been puzzling. Rather than consuming supplements to duplicate the intake of nutrients that my diet already supplies, Dr. Akin agreed that it made sense to investigate why my body is not absorbing what I am taking in.

To accomplish this, we ran a series of GI panels to explore what was going on with my digestion. Among the things we discovered was the existence of several pathogens that should have been eliminated by a detoxing agent (MMS) I had been using for over a year. Upon re-examination, I discovered a wrong turn in my path. I had been using the MMS at too low of a dosage. The bad news is that I wasted some time. The good news is that the possibility now exists for more impact from the MMS.

While Dr. Akin and I have been discovering the issues with my digestive system, my healer, Jose, discovered a huge quantity of dimethyl mercury laced throughout my body. He is very hopeful that we may see significant changes in my condition once the dimethyl mercury is gone. I am very hopeful that the MMS (in proper dosage) will help accelerate its departure.

It constantly amazes me how possibilities for healing keep showing up in my life, as long as I keep my intention focused on recovery. There always seems to be another step to take, another path to explore. Recovering from ALS, as always, continues to be an exciting adventure.

Saturday, May 8, 2010

Black Knights, SerenAides, and Lou Gehrig’s Disease

Life and the media are filled with examples of people who have beaten the odds and overcome seemingly insurmountable obstacles through the sheer force of will. One of the more dramatic images that come to my mind is actually a fictional and quite humorous one with which I often identify. I am referring to a scene from the 1975 comedy “Monty Python and the Holy Grail”, which many of you are probably too young to remember. In this scene, the Black Knight is defeated by King Arthur while trying to prevent Arthur from crossing the bridge that the knight has sworn to guard. Each time Arthur relieves the knight of one of his appendages, the knight dismisses Arthur’s success with some belittling comment. At one point during the fight, with blood gushing in comic exaggeration from his armless shoulder, like water from a fire hydrant, the knight shouts, “Ah, it’s only a flesh wound!” Finally, reduced to an armless and legless torso, the defiant knight screams after the departing Arthur, “Come back here, you lily-livered coward! I’ll bite your knee caps off!” Despite the goriness of the scene, it is hard not to chuckle at the absurdity. Yet I always find myself admiring the knight’s tenacity in handling adversity. Each time I have lost a little bit more of my mobility, I have found myself reflecting on the knight and finding inspiration in his refusal to quit.

Last September, a more aggressive acupuncture treatment resulted in the loss of most of my remaining arm and hand strength. Operating my wheelchair and my computer mouse, the two remaining activities in my life that provide any physical independence, had become nearly impossible. For a short while, I felt crushed and defeated. I had arrived at another major choice point. Giving in to the depressing emotions would surely have led to more physical and emotional degeneration. That choice was unacceptable. Instead I chose to remain focused in the moment and not project my set back into a continuing pattern. I kept telling myself the weakness is now but, not necessarily tomorrow.

But I needed inspiration to regain my internal strength. Among the sources from which it emerged, there are two that stand out in my memory. One was the Black Knight. While it is difficult to bite the kneecaps off of a disease, remembering his tenacity helped to pull me through. The other source was SerenAide. For six years now, the people who participate in this wonderful evening of music have been an amazing source of emotional, physical and financial support to me and my family, and in the fight to defeat Lou Gehrig’s disease. I couldn’t bear the thought of letting them down. So I chose to fight my way back.

As a result, I have regained about 90% of the strength that I had lost. Last month I observed my 10th anniversary of living with ALS, an achievement marked by fewer than 5% of those diagnosed with this disease. It is difficult to find the words to adequately express my degree of gratitude to the people of SerenAide and to the Black Knight for the choices they help me to make.

Tuesday, April 27, 2010

A SerenAide for Lou Gehrig’s Disease

In 2005, I was beginning my fifth year of living with ALS, and despite several trips to Germany for alternative medical treatment, nothing seemed to be working to deter the slow but unrelenting progress of the disease. Among the most difficult things I had to deal with that year was to watch the toll that my physical deterioration was taking on my wife. Diane is the kind of person who is always available to listen to and console others about their problems, but rarely talks about her own. The depth of her consideration for others is one of many rare qualities that have caused her choir students to develop a deep respect, love and attachment year after year after year.

By the spring of 2005, the students had become painfully aware that something was wrong, but they weren’t quite sure how to reach out. One student took the initiative to express in writing what many of the choir members were feeling. In Diane’s own words, when describing it to others, “I received the most wonderful letter from a student who expressed concern, and said even though it was written by this one person, ‘ I am just another face in the choir, just another one of your many children.’ The letter went on to say, ‘You have been the object of strength to us this far, now let us return the favor. Let us help you…. Let us heal you.’” The letter continued with a quote from a song that Diane had been teaching that year, entitled, ”On the Morrow”. It said, “After all, ‘on the morrow, when the sun is at rise… no more sorrow in thy eyes- Trust in the morrow, and it shall come’”.

A few short weeks later, the students had collaborated with support from some of the choir parents, and school administration, to produce a benefit concert on our behalf, which they entitled SerenAide. They enrolled students, teachers and others from the community to perform an entertaining and heartwarming evening of music with only 3 weeks’ preparation. Several times during the evening, my family and I were deeply moved as student performers shot adoring glances toward their beloved teacher, seemingly in pursuit of some sign of approval. When a small ensemble of choir students gathered just a few feet in front of us to perform the final number, however, we were completely overwhelmed. Their selection and heartfelt rendition of “On the Morrow” simply brought us to our knees.

That evening in April of 2005 was amazing and magical. What is even more amazing is that the students have turned SerenAide into a tradition. On May 27th, we will enjoy our sixth annual SerenAide concert to raise money for the fight against Lou Gehrig’s disease. If you happen to be in the vicinity of J. P. Stevens High School in Edison, N.J. at 7 p.m. on that evening, we would love to have you join us. It is an evening you will not soon forget!

Friday, April 9, 2010

Blessings in Disguise – An excerpt from: From Nightmares to Miracles

A constant source of amazement to me during my journey with ALS has been the astounding number of blessings that have come my way as a result of my illness – blessings of friendship, physical assistance, monetary support, insight and more. What I have also learned through my experiences with this illness is that blessings don’t always look or feel like blessings. Sometimes it’s the insight derived from a bad situation or the change that emerges from it that turns out to be a valuable gift. A difficult interpersonal situation or the loss of a critical resource can stretch you to the limits of what you know about handling adversity, but can also result in some important lessons. Having had several such opportunities in recent years, I have become more attuned to looking for and appreciating the blessings in disguise that adorn my life.

One example of this phenomenon occurred with my first live-in health aide. Ethan (whose name I have changed to protect the guilty) actually possessed a number of very positive attributes. He was extremely well organized, kept the house clean and in good order, transferred and attended to me well on a physical level, and was respectful in his behavior toward my wife and children. For the first several weeks, he was working out quite well. Gradually, however, it became apparent that Ethan had some personal issues that were becoming increasingly uncomfortable for me and beginning to impinge on the quality of his care. The man had very strong opinions, a tendency to move quickly and unnecessarily from discussion to argument if offered an alternative perspective on an issue, and a degree of self-absorption that demonstrated little regard for the emotional impact of his behaviors on others.

My increasing discomfort with these behavior patterns brought into sharp focus my biggest problem in dealing with this first stranger in our midst. I was feeling extremely vulnerable. Here I was at the mercy of a man who was becoming increasingly emotionally abusive and upon whom I was totally dependent for all my basic activities of daily living. I felt helpless and trapped, knowing that it might not be possible to find an immediate replacement, and uncomfortable with the idea of placing an additional burden on Diane if she had to take off from work to care for me until one was found. Unable to call the home health aide agency without his assistance, I was also fearful of further inciting Ethan’s dysfunctional behavior by revealing my intent to replace him.

Ethan was with us for a period of just under three months. It seemed much longer, and given the stress produced by the situation, it lasted much longer than it should have. Our relationship ended on a day in late June that, by no coincidence, happened to be Diane’s last day of work for the school year. Ethan had launched into a prolonged tirade over a question I had asked him while he was showering me that morning.

The tirade lasted well over an hour despite my efforts to clarify my intention and despite efforts to remind him that he was creating an intolerable level of stress for a patient with Lou Gehrig’s Disease. His rant evolved into anger over how unappreciative I was and threats over how difficult it was going to be to replace the quality of his care.

Bolstered by the knowledge that Diane would be home for the summer within hours, and having reached my breaking point, I screamed at him, with expletives included, exactly what I thought of the quality of his care. Ironically, it was my lashing back that took the wind out of his sails and calmed him down. He was so “hurt” by my comments that he decided he could no longer work with me and would have to leave immediately. I was both shocked and relieved by this sudden turn of events. Ethan left that afternoon, and a replacement was provided the very next day.

Given the intensity of this episode, it could probably be argued that Ethan’s tirade was anything but a blessing. So let me explain why I see it as such. The gifts that Ethan left me were a heightened awareness of my fears about being vulnerable, and an opportunity to reality test and mitigate those fears. I learned that, while I was physically limited, I was not helpless to take care of myself. There were subsequent aides who also did not work out well and needed to be replaced. Yet I never again feared the changing of the guard, or being left without care in the process. I discovered that there were friends, family members and multiple agencies that could be counted on to step in and fill the breach, if necessary, when transitioning to a new aide. This experience made me more aware of the support and resources at my disposal, and how only fear could prevent me from exercising my power to deploy them.

Some might argue that my experience with Ethan was more of a disaster than a blessing. But consider the impact of that choice. First of all, to consider Ethan the perpetrator of a disaster would elicit in me strong feelings of blame toward him, generating strong negative energy that would not serve me well. It would distract me from my own culpability in allowing the situation to continue longer than it should have. I would deprive myself of some very important learning: that I am not at anyone’s mercy; that I do not need to be driven by fear; that I have many resources available to me and the power to use them. So, rather than demonizing Ethan, I choose to remember him with gratitude for providing me with a powerful, if painful, learning opportunity that has helped me to evolve to a much calmer, more deliberate and more effective manner of dealing with life’s little crises.

Saturday, March 27, 2010

Thank God for Spring! A Blessing when Living with ALS.

You don’t have to be fighting a life threatening illness to be celebrating the end of a season that packed way too much wind, water, snow and cold. As someone who has lost a significant amount of his normal body weight, however, I find it particularly sweet. Even though I have regained close to half of what I had lost since the onset of ALS, inactivity from paralysis keeps me extremely vulnerable to the cold. My body doesn’t start to feel warm until the thermometer reaches at least 75 degrees. Venturing outdoors during the colder weather requires so much warm clothing that I can barely exercise what little physical mobility I have. The combination of the exposure and reduced independence can put quite a damper on my incentive to leave the house.

Gazing through my bedroom window in recent mornings, while basking in the warmth of the sun’s rays and studying the greening of the grass and the formation of the trees’ new buds, the rebirth that is spring surges inside of me. I look forward with the anticipation and excitement of a circus bound child to strolls around the block with my wife, visits with friends and neighbors, shopping excursions, dining out, trips to parks, and other outings. I especially look forward to testing the extent of the regained strength in my right hand for driving my wheelchair. During a recent walk with my aide, on one of the first days to break into the mid-sixties, my hand lasted far longer than I expected before experiencing fatigue. This leaves me very excited about the prospects for my increased level of activity this spring and summer.

Among the things that make living with ALS difficult is the constant bombardment by external reminders of the limitations it can impose. The bone-chilling feel of temperatures that used to seem mild reminds me of the frailty of my body. Inabilities to scratch an itch or grasp a pencil are among the constant reminders of the mobility ALS has stolen. Perhaps worst of all, is the loss of dignity and disrespect that can be suffered at the hands of well-meaning strangers who assume how badly you feel and behave out of pity based on the projection of their own fears of what it would be like to be in your place.

What facing such situations has taught me, as did the challenges of sleeping with ALS, is the importance of choosing how to focus my attention. Making conscious choices about how to view my circumstances has helped me cope with or prevent the stress of health issues, financial problems, interpersonal challenges, and other crises. Living with ALS has taught me that we human beings have tremendous power to direct our thoughts, and that our thoughts in turn have tremendous influence on our mental, emotional, physical, and spiritual well-being. So when I am cold, I work to focus my thoughts on my to-do list for the day. Instead of lamenting over my inability to deal with an itch or handle a pencil, I dwell on the gratitude felt over my continuing ability to steer my wheel chair. Rather than take umbrage over other’s misguided displays of compassion, I consider their intensions, and seek to ease their discomfort. Taking the time to appreciate the beauty around me is just one of the important, yet simple, practices that keep my attention positively focused. Thank God for Spring, which makes it so much easier to apply.

Friday, March 19, 2010

The Power of Being Present - A Key to Coping with Adversity

Perhaps the most important lesson that living with ALS has taught me about coping with adversity is the power of being present. Over the past few years, as I have refined my ability to do so, there have been countless instances where staying focused in the moment has preserved my energy, my sense of peace, and my sanity. One of my most powerful recollections of success with this process was an episode about 2 years ago while trying to brush my teeth. This is an exercise that requires a good deal of strategic positioning of my hips, torso, elbows, and hands. With my hands overlapped on the edge of the sink and propped up by a folded towel (for additional height and easier sliding along the edge of the vanity), my aide positions the barrel of the brush between my hands, and then places the brush head into my mouth. After removing the breathing apparatus from my face, my aide then carefully observes as I use the limited movement of my head and tongue to manipulate the brush around my teeth. Once positioned, I can typically complete this exercise in a minute or two without stopping.

On that particular day 2 years ago, the difficulty of the task became so intense that I ran out of breath more than once, turning red and then blue in the face, totally exhausted. As I turned over completion of the effort to my health aide, the fears began their war dance on my imagination. It seemed certain that ALS was progressing with its attack on my hands, neck and tongue. I began to panic. My mind raced ahead to pictures of a Joe Wions unable to move at all, completely dependent on others for even the simplest task, and incapable of communicating his needs.

As my heartbeat quickened and my throat tightened, the teaching of one of my then recent alternative health practitioners suddenly crashed into my consciousness. It occurred to me that I was projecting the experience of the moment into an irreversible and horrifying future. With this altered consciousness, I was able to tell myself, “This weakness is only happening now”. Focusing more and more in the moment brought with it a sense of peace and calm. I transformed into an observer rather than a victim of my emotions. As my body relaxed, the tensions melted away, as did, a short while later, the weakness. Two years later, I am still performing the activity with the same level of independence.

Since learning to surrender in my battle with the toothbrush, this technique of staying in the moment, of being present, has helped me over and over again. In the face of many potentially frightening circumstances, it has enabled me to maintain control of my wellbeing, solve problems effectively, and stay on track with my healing process while coping with difficult challenges. It worked when I lost funding for my health aide, and didn’t know where the money would come from to keep paying him. It worked when my wheelchair accessible van broke down, and I didn’t know how I was going to get home. It has even worked when something has gone wrong that took months to resolve.

My most recent example of a long term challenge began in September of last year when a change in my acupuncture protocol backfired, leaving my arms and hands so weak, that I could not operate my power wheelchair or my computer mouse. Again I had to fight off the panic. It took almost 6 months to accomplish the required problem-solving and healing, but today my hand strength has returned to about 90 percent of where it was back in September. Typically this degree of loss for an ALS patient is not recoverable. Through the power of being in the moment and staying focused on my intention to heal, I was able to cope with this difficult challenge and fight my way back.

There is an affirmation that I recite each day as part of my morning ritual. It goes like this, “I believe in living in the moment, total present time, going with the flow, and loving the challenges”. Whenever I find myself feeling threatened by a difficult moment, I recite this affirmation like a mantra. It has a soothing and focusing effect that never fails to restore my balance and power. There have been several instances during the past 6 months that this affirmation has been put through its paces. It has been my stalwart and unfailing ally.

Friday, March 12, 2010

A Tale of Two Nights – Rising to One Difficult Challenge of Living with ALS

Recently I read an article by historian, Tony Judt, called “Night”. It is one of a series of personal reminiscences that Mr. Judt has been writing for the New York Review of Books. In this particular piece, he describes what it is like trying to survive a typical night for someone who is nearly completely paralyzed. As someone with considerable experience in this endeavor, I can confirm that getting a good night’s sleep is potentially one of the most difficult tasks in dealing with ALS. Mr. Judt has been living with the illness now for about a year and a half. In his article, he describes the intolerability he experiences and the anger he harbors towards this unwanted and overpowering bed partner. He describes the challenge of getting through the night with eloquence and painfully detailed accuracy. You can find the piece at the following link:
Night - The New York Review of Books

As someone living with ALS for nearly a decade, and sharing a level of immobility comparable to Mr. Judt’s, the article stirs in me a great deal of compassion as well as a sense of “close to home”. However, what it brings into sharpest focus for me is the degree to which I have grown to master such circumstances by focusing my mind on thoughts that encourage, gratify and sustain me. After my health aide has completed the process of arranging my body for optimal possible comfort in bed, while lying there in a mummy-like state, I guide my mind away from my physical constraints. Instead, I turn my attention to prayers, visions of being healed, and gratitude for my remaining capabilities and the people in my life who sustain me.

It has taken me several years of dedicated practice to reach this point in dealing with the difficult challenge of sleeping with ALS. And even with years of practice, I cannot profess to have yet achieved a state of complete evolution. The result for most evenings, however, is to doze off within a few minutes of closing my eyes and rarely awakening more than once (usually to empty my bladder into a strategically placed bottle). Occasionally, I will have to disturb my wife’s sleep to handle an intolerable itch or an adjustment to my Bi-PAP. Fortunately, we are both typically able to fall back to sleep quickly and easily. My slumber is often accompanied by pleasant dreams in which I am fully mobile.

As if the battle with ALS was not enough for anyone to deal with, I am also a life-long member of the Tourette’s Syndrome club. The urge to twitch in a precisely particular way can be both mentally excruciating and physically irresistible. Imagine having an overwhelming need to flex a muscle while living in a state of nearly complete paralysis. Had I not learned to control the focus of my mind, I surely would have lost it by now!

Friday, March 5, 2010

An Amazing Journey of Alternative Healing

Valerie Lemme is a practitioner of the journey process, developed by Brandon Bays ( She and I have been working together on a monthly basis for about a year and a half. A few weeks ago, Valerie guided me through my most powerful journey to date. We began, as always, by getting me into a very relaxed state. Next, she asked me to open an imaginary door to discover who my mentor would be for this particular journey. It turned out to be my father, who I had lost more than 40 years ago when I was only 18. It felt good to be with him again.

There are two types of journey processes, an emotional one and a physical. In our work together, Valerie and I usually combine them. So as I lay there, eyes closed, relaxed in my wheelchair, she instructed me to get into my special vehicle with my dad to begin the physical journey through my body. After traveling through great open spaces, over deep dark chasms, and careening through tight, curved apertures, the vehicle gently set us down on the floor of a dimly lit arch-shaped tunnel. Upon emerging from the vehicle, Valerie asked me to describe the floor. It was a dark, gooey, kind of tar-like muck. To begin the emotional journey, she asked me, “If there were some feeling coming from this muck, what would it be?” What occurred to me was the sensation of being stuck.

The emotional journey consists of allowing whatever emotion comes up to totally overwhelm you. You simply allow the emotion to grow and grow in strength and infuse your entire being. It can be a very intense process. When you give yourself up to an emotion, allowing it to have its way with you, you eventually reach a point where the intensity peaks, and then begins to subside.

So in this particular journey, Valerie asked me to let the feeling of being stuck have its way with me, to recall every situation throughout my life in which I felt stuck. Once the emotion had run its course, she asked, “Now what’s beneath that, what’s there now?” At this point, the emotion of frustration emerged. We repeated this process until no more emotion was present.

Usually, as I allow myself to fall through these layers of emotion, memories come up of traumatic situations involving specific people. A fundamental purpose of the journey process is to surface and resolve the traumas associated with these memories, which can often be the triggering points or sources of illness. So, Valerie through her listening, probing, and coaching will help me determine which of the people who come up in these memories I need to have a conversation with to resolve the issues. We then sit around a campfire and peacefully exchange views to air out and resolve our concerns with each other.

In this particular journey, no particular people came to mind. As it turned out, all of the situations and emotions revolved around my ten year battle with ALS. I was stuck in my wheelchair, unable to lift an arm or a leg. I was frustrated that after six years of exploring and engaging in alternative medicine, I was still not able to walk again, or even lift my arm and move a finger to scratch an itch, hold a pencil, or use a fork to feed myself.

Listening to all of this, Valerie came up with what I thought was a brilliant suggestion. Since there was no person emerging from my memories with whom I needed to have a conversation, she said, “How about inviting ALS to the campfire?”

ALS showed up as a black, gooey mass, similar in color and texture to the floor of the tunnel where our vehicle had delivered me and my dad. With the work I had done over the past few years, all the negative feelings, like anger and resentment toward the disease, had been washed away. The mixture of emotions coursing through my body in the presence of this mysterious blob included amazement, curiosity, amusement, and gratitude. It was the gratitude that I felt compelled to express.

I told this apparition how grateful I felt for the many gifts of friendship, support, insight, and growth that had come my way in 10 years of living with the illness. Then I told him, “But I think I’ve learned what I needed to, and it’s time for you to go.” He responded, “Even if I wanted to, I wouldn’t know how, and if I did leave, it would be my death.” “Have you considered,” I responded, “that if you stay, and bring my life to an end, we will both die?”

It took Valerie and I a few moments to compose ourselves in reaction to the unexpectedly humorous tone of the answer. “Gee, nobody never splained it to me that way before” Once I managed to stop laughing, I asked, “Well, how about this? Since neither of us knows how to part company, and since there’s no pay-off for you to stay, would you be willing to leave it in the hands of a higher power to arrange a separation?” My heart swelled with gratitude and relief in response to his affirmative response.

My dad then proceeded to cut the sickly, neuron-like cords that we now noticed had been binding me to the tarry mass, and hosing me down to cleanse me of all connections with the disease – all according to Valerie’s instructions. As my mentor fulfilled his duties, I observed the tarry blob lighten in color, and melt into the ground, which began to transform into a smooth, paved path replacing the sticky floor of the tunnel where we had landed earlier.

As if the symbolism of these events wasn’t stirring enough, what happened next left me absolutely blubbering. Dad put his arm around my shoulders, looked me in the eye, and softly spoke the words that he shared with everyone else he knew in life, but was never able to say to me. “I love you son, and I’m very proud of you.”

Two days after this adventure, my hands were functioning with a level of strength that had been absent for months! I was driving my wheelchair with far less assistance, and operating my computer mouse with much greater ease. Is this the beginning of a new level of healing? Stay tuned! We’ll find out.

Wednesday, February 24, 2010

Six Steps Toward Recovering from ALS: Spiritual Healing, Alternative Healing, Diet, and More

There are 6 key areas of practice to which I attribute the turn around I have achieved and sustained in the last 3 1/2 years.

1. Detox, Detox, Detox....! Although no one knows for sure exactly what causes ALS, many suspect that toxicity is involved. These suspicions include mercury poisoning, chemical exposures, viral infections and other toxins as contributors to the development of ALS. Given our constant exposure to pollutants in our air, water, food and even household cleaning products, it is worth taking precautions even if you are not ill. For those of us with a serious illness, however, it is critical. In addition to avoiding exposure to toxins, I also practice regular detoxification through diet and supplements.

2. Among the most significant impacts I have experienced on my health is the link between diet and ALS. Since changing my diet to one of primarily raw fruits and vegetables, I have benefited from amazing improvements in skin quality, weight gain, energy and more. I would highly recommend 2 books: The Vegetarian Guide to Diet and Salad, by Dr. Norman Walker and The 80/10/10 Diet, by Dr. Douglas Graham. Eating this way has made the most dramatic difference of anything that I have done for my energy level and my strength. I also use a few dietary supplements, which change from time to time, based on the results of hair analysis and other laboratory tests as needed. My partner and guide in the use of supplements is Dr. Kathleen Akin:

3. Exercise has been a key to preserving my strength and mobility, and to the avoidance or elimination of pain. My program includes range of motion exercises and light aerobic exercise, facilitated by equipment to compensate for my paralysis.

4. I have found various sorts of spiritual healing to be very helpful. Two approaches that have worked for me are the "Healing Codes" (, and the healing process described in The Journey by Brandon Bays. You can learn more about it at: Affirmations, prayer and meditation are also regular parts of my alternative healing regimen. These latter practices have a lot to do with maintaining a positive focus, which is quite possibly, in my experience, the most important element in recovering from an illness or dealing with other life challenges.

5. One of the greatest leaps of faith that I have practiced is the use of a healer. I am hard pressed to explain how Jose looks into my body each day over the phone and finds things to eliminate or repair, but he has helped me to improve aspects of my breathing, reduce problems with itching, reverse losses in strength, and minimized problems with swallowing.

6. Finally there is the use of acupuncture, which I have been practicing for several years. It has had its ups and downs, but I believe that it is helping. After each session, my body experiences a marked increase in strength. The doctor and I continue to search for a way to build and sustain that strength.

While these practices have not yet produced the improvements in breathing, speech clarity, and mobility that I seek, the progression of the disease appears to be contained, and I look forward to further improvements.

Thursday, February 18, 2010

Evidence of Progress in Recovering from ALS

The list of techniques and remedies I have tried over the past 8 years is enormous. That is one of the reasons I wrote From Nightmares to Miracles. A person afflicted with a medically incurable illness can burn through a considerable amount of time, money, and energy trying to find alternative approaches that work. These are three vital resources that most people with ALS (PALS) don’t have in abundant supply. In the book, I discuss dozens of approaches including herbal remedies, vitamins, homeopathic treatment, electronic and frequency devices, spiritual healing techniques, exercise, diet, and more. I explain what worked for me, what didn’t, how I arrived at my current protocol, and why I believe that what I have learned has implications far beyond recoverin from ALS. While the same approach may not work for everyone, I believe there are elements of the practices I follow that have universal application.

It would probably help to alleviate some healthy skepticism by providing some evidence for my claims. So, let me give you some. Late 2006, was a huge turning point for me. My weight had dropped to a mere 99 lbs. This was barely more than half of my pre-ALS weight. My fairly athletic, 5’11’’ frame typically weighed in at about 185 lbs. prior to onset of the disease. By the end of 2006, my 99 lb., wheelchair- bound presence resembled that of someone who had barely survived Auschwitz. Every rib in my torso protruded though my skin. My arms had grown so weak that they required rest after two hours of moving a computer mouse. My skin was pale and dry, requiring lotion on a daily basis to avoid breakdown. Fatigue made afternoon naps necessary to get through the day. Restlessness in my legs from poor circulation made sleeping for more than two hours at a time a rare occurrence. Chronic joint and muscle stiffness and cramping interfered with sleep, and caused excruciating pain when being lifted out of bed in the morning.

Today, I weigh 138 lbs. Health practitioners are constantly amazed by the color and tone quality of my skin, and the complete absence of bed sores. Waking up during the night rarely occurs more than once to relieve my bladder. I rarely need a nap, and typically spend five to six hours a day at the computer, stopping for other activities vs. fatigue. Chronic pain is absent from my life.

All of the health care practitioners who see me on a regular basis find these changes astounding. Weight gain for someone in the advanced stages of ALS is extremely rare, as are the absence of bed sores for someone bound to a wheelchair. It is also quite common for someone with ALS or any life-threatening illness to suffer bouts of depression. I can assure you that my current state of mind is anything but depressed.

So by now, I would hope that this information has raised interest in your minds about how these changes have been achieved. In my next entry, I will begin to share what has worked for me in beating back the ravages of ALS, and handling life’s twists and turns with greater poise, patience, confidence and effectiveness. Stay tuned!

Saturday, February 13, 2010

Welcome to From Nightmares to Miracles– Surviving ALS and Other Overwhelming Challenges

My wife, Diane, and I have been taking walks together for years. We find it a wonderful way to take in the sights, sounds and smells of the outdoors, get some exercise, catch up on things, and just enjoy each others company. One beautiful spring day in April of 2000, Diane noticed that I was dragging the toes of my right foot during one of our walks. Over the next several weeks, I became increasingly conscious that the leg was feeling oddly sluggish during workouts, tennis and other activities. The thought that this could be the onset of symptoms for a fatal disease never entered my mind until two years later when a motor-neuron specialist revealed his tentative diagnosis after an initial exam and testing.

Amyotrophic lateral sclerosis (aka ALS and Lou Gehrig’s Disease) is a disease of unknown origin that attacks the spinal cord and motor neurons, causing paralysis and death, usually through asphyxiation when the diaphragm can no longer function. There is no known medical cure, and little effective treatment. ALS takes the lives of 90% of it’s victims within 2-5 years. Of those in the remaining 10%, there are PALS (persons with ALS) who have been known to live 10 to 20 years or more. Stephen Hawking, the renowned physicist, is probably the most famous and longest living survivor. Dr. Hawking has been living with ALS for more than 40 years.

Why is it that so few live longer than five years? Are there any common factors among those that survive 10 years or longer? Unfortunately, there is no research to my knowledge that has pursued the answers to these questions. But I have some suspicions about the answers, based on what has worked for me.

Come this April, I will have been living with ALS for 10 years. During this time, I have explored an extensive array of non-traditional healing practices. The journey has taught me a great deal about ALS, myself, and handling adversity, and I want to share that knowledge. I have written a book called, From Nightmares to Miracles that documents my journey and what it has taught me. As a first time author, however, I am learning that getting published can be more of a challenge than writing the manuscript. So, while I am pursuing publication, I have started this blog to share what I have learned, with the added benefit that a blog allows me to continue my own learning through reader comments.

It is my hope that this blog will become a forum for sharing approaches to dealing and coping with overwhelming challenges. It is my hope that others can learn from my experience, and I from theirs. Your comments and stories are welcomed. Whether you are coping with an illness, a divorce, career derailment, death of a loved one, parenting crises, financial issues or other serious circumstances, this blog can be a place to share and explore what works to cope, survive and recover. Please help me make it a place where people can find hope, inspiration and ideas for dealing with their difficulties. Let’s create a space in which people can find ways to turn their nightmares into miracles.