A New Voice is Coming to Town

A few weeks ago, I wrote to you about how difficult it has become for people to interpret my ALS accent, and the difficulties it presents for both me and those trying to understand. Recently, we discovered a device that may provide at least a partial solution. It is a small computer made by a company called DynaVox (DynaVox Mayer-Johnson | AAC Communication Products & Services). This device will attach to my wheelchair, and is activated by the movement of my eyes. By moving my eyes across various screens, I can scan a keyboard or lists of words and phrases, and when I find the one desired, a simple blink of the eyes selects it. After composing something to say, another blink signals the computer to speak it for me. It can be programmed with custom words and phrases. It can also be programmed to answer my phone and operate my TV.

Although it can take some time to blink in words and phrases in the moment, it will restore a good deal of my verbal independence, and enable friends to communicate with me again. For someone in the advanced stages of living with ALS, this machine is a God send! It will return freedoms, like changing the TV channel, for which I have had to depend on others for some time. It will also eliminate a good deal of frustration and energy drain on my part and those trying to communicate with me by reducing the need for constant repetition of what I am trying to say. Having recently lost my ability to safely taste most of my food, the restoration of these freedoms will be particularly sweet! Hopefully, the device will arrive within the next few weeks. We are looking forward to it with great anticipation and excitement.

The old saying, “when one door closes, another opens” comes to mind. What experiences have you had that remind you of this phrase?

Wake Up Call

Having my swallowing deteriorate to the point of needing a feeding tube has caused me a great deal of reflection and contemplation. Given my intention for fully recovering from ALS, having to get a feeding tube was a huge disappointment. Thinking about changes in my behavior over the past year or so, I realized that I have stopped doing breathing exercises, meditation, taking mental trips to the gym, and visualizing myself in a fully healthy and mobile state. I have gotten complacent. As a result, my breathing has declined to its lowest level ever, my voice clarity and volume are so poor that most people can’t understand me, I have lost significant weight, navigating my wheelchair has become more difficult, and swallowing has eroded to the point of requiring a feeding tube. The tube, for me, has been a startling wake up call.

Perhaps not so coincidentally, two other events have dovetailed with my reawakening. One was the reading of my friend, Howard Guttman’s, latest book, ”Coach Yourself to Win” http://www.amazon.com/Coach-Yourself-Win-Breakthrough-Performance/dp/0071640347/ref=sr_1_4?s=books&ie=UTF8&qid=1297717601&sr=1-4. In it, Howard quotes from my manuscript words that serve as a powerful reminder of where I have strayed from:

“...it takes a while to get past the surrealism, to really get it that your time may be limited, and how you are spending your time right now is how you are choosing to spend what is left of your life.... It finally hit me that holding on to my typical patterns wasn’t going to do anything but burn me out and cause me to fade away with no additional contribution to myself or anyone else.... Once I got it that things had to change, I started to shift my priorities. My work was no longer as a management consultant. My work was now to demonstrate how to take responsibility for my own survival and live with intention to find a way to beat an unbeatable disease.”

While my consulting days ended years ago, reading my own words in Howard’s book made me realize that I have let too many other activities interfere with living out my intention. It made me realize that it is time to refocus my priorities. A second quote from my manuscript reminded me dramatically of what was at stake:

” I have pretty consistently held to the notion throughout this ordeal that recovery (at some level) is a possibility. The flaw in this way of thinking is that, if reversing this disease is a “possibility”, then the opposite is also a “possibility”. ALS is a neurological disorder, and the brain is the center of the nervous system. If my brain is sending out messages to the rest of the system that recovery is only an “option”, then my potential for recovery has been compromised. So my strategy going forward is to convince myself that recovery is a certainty, and that it has already begun.”

Such convincing requires a great deal of meditation and visualization. Giving up such activities results in too many unwanted possibilities. The stakes with ALS are simply too high to risk with unintentional behavior.

The other event that coincided with my reawakening was joining Dr Craig Oester’s Healers of ALS (HALS) group https://alsa.lotsahelpinghands.com/c/634092/login/. Over the past several months Dr. Craig has become one of my heroes. He has been living with ALS for seventeen years. After approaching death as a hospice patient, he finally began to turn his health around, improving enough to get thrown out of hospice. Craig and I share the belief that the key to healing from ALS lies in managing one’s thoughts and beliefs. As a psychologist, who has successfully used this basic premise to reverse his own symptoms, he is now inviting other PALS (people with ALS) to join him in an effort to see if his results in recovering from ALS are reproducible. His determination and strength of focus have inspired me and redirected my attention to behave in alignment with my intention with greater fervor.

What experiences have you had with getting off track from an intention and recovering your focus? What helped you to get back on track?

A Tubing I Will Go!

In my last post, I described some of my reservations about getting a feeding tube. A few readers responded with helpful information, and I am grateful for their input. Since that post, however, I discovered an even greater concern in consultation with a doctor who was prepared to perform the procedure on me. The new concern was the possibility that, because of my limited breathing capacity, I might wind up with a tracheotomy, a situation that I had once feared more than death. Now, faced with the more imminent possibility of death, and not ready to go, I was stealing myself to the possibility, and hoping for the best.

Then, last week I spoke with a surgeon who has been successful at performing this operation on ALS patients for 10 years with a procedure that he designed. It is less invasive than what others are doing (nothing down the throat), and he has never had to trache a patient. We are planning to have the procedure done on January 19. It’s a tough call to give up tasting, chewing and swallowing food, but I won’t miss the hours of coughing and gagging over my meals, and trying to pull food particles out of my trachea and bronchial tubes with a cough assist machine.

There is a glitch, however, and it’s a big one. Once I have this procedure, insurance will no longer cover hospice. This is a good news/bad news scenario. While I would just as soon be out of hospice after 5-1/2 years, it means the loss of a lot of resources. There is equipment like my hospital bed and breathing equipment that insurance will still cover, but not at 100%. There is support staff like my social worker, Liz Cohen, who has been very helpful over the years. Most importantly, I will lose 20 hours a week of assistance from my friend and aide Lloyd Smith, who has been a loyal and caring companion for 5 years. His loss is both an emotional one and a potential financial puzzle, because we can’t afford to replace him, and that will put an additional burden on my live-in aide, Jimmy. So in addition to the emotional and psychological challenge of learning to live with a tube hanging out of my stomach, we also have some financial issues to grapple with. Another adventure begins in my continuing saga of living with ALS!

Each time this disease presents me with a new challenge it tests my resolve to stay focused on my advances vs. my setbacks, and the achievement of an ALS recovery. Every once in a while the challenge is so significant that I have to work extra hard at staying in the moment, and remembering all that I have to be grateful for. This is one of those times. One of the things for which I am deeply grateful is that my readership continually reinforces the notion that somehow the sharing of my nightmares and how I handle them helps them with their own. Please keep the comments coming to let me know whether this blog is continuing to fulfill its purpose, and thanks for reading.

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?

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?

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.

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.

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!

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.