Reconsidering My Words

Sorry it has taken so long to get out another post. I have been going through a rough time. Adjustments to the feeding tube have resulted in weight loss, and consequently, strength. I am currently unable to operate my computer independently, making it difficult to keep up with the blog after getting through email when I have help. Hopefully all of this will change soon. Until it does, I will try to get out a post at least once a month.

It has always amazed me how new approaches to healing seem to emerge just when you need them. After the insertion of the feeding tube provided my wake-up call, Howard Guttman’s quotes of my own words in his latest book and Dr. Craig Oster’s Healers of ALS (HALS) revealed to me practices I had been neglecting and needed to re-implement. In addition, the HALS group has been helping me to explore more deeply the psychological paths to healing. A new member of the group may also have made a valuable contribution to my dietary regimen. Although she has been living with ALS for a much shorter time and is less advanced in her progression than I, she has had greater success in reversing symptoms. While we both follow primarily a raw vegan diet, there are a few elements to her diet that I have deliberately omitted. I am currently investigating a program that I believe guided her efforts, and one which claims to have reversed several cases of ALS.

Along with my HALS involvement, I have been working with a fellow by the name of Marty Murray. I didn’t know what had originated Marty’s interest and dedication to helping PALS heal. During a recent visit to my home I discovered that he is on a mission to make the world healthier. His passion for healing grew out of some personal development activities that led to his discovery of ways to cure his own ailments. He claims that the few who have stayed with his challenging methods have all experienced some sort of turnaround, even those living with ALS. His methods are quite controversial, requiring that PALS accept the premise that the disease is a function of the way they operate. See the website Making-Connections. Some people perceive this as a form of blaming the victim. In my own case, I found that accepting the notion that I have somehow brought this illness on myself is empowering. If I have the power to create it, then I also have the power to heal it. I came to this way of thinking long before either Marty or Dr. Craig entered my life, and have found them both to be welcome partners in strengthening the mental and spiritual components of my healing program.

Recently, while trying to comfort another HALS member, I mentioned that I rarely allow myself more than a few moments in a depressed state. In the past few months, this belief has been challenged several times. Just last week, a trip to the emergency room for dehydration coming from some ill-considered premature changes to my diet, shook my convictions. An ill-conceived prescription (something that I don’t often take) worsened my condition, causing me to suffer for days with severe stomach pain. Throughout this ordeal, I have struggled to fend off thoughts of losing my battle with ALS, and fighting to refocus on my intention, affirmations, and healing practices. It has been incredibly difficult. Fortunately, as the pain has eased so has the struggle. I finally feel like I am getting back on track. Moral of this story is: it’s a lot easier to follow your intention when you are feeling well, but you may become totally lost without one. How many of you have found your intention to be a valuable compass in guiding you back to a positive perspective?

Healing is Hard Work

Believing that you can actually heal when the conventional wisdom tells you there is no chance of recovery takes a great deal of conviction, focus, and discipline. As I wrote in my February 14, 2011 post, I had lost my focus and discipline over the past year or two, and it cost me gains that I had achieved in my physical condition and more. Since the “Wake-up Call” that I wrote about last month, I have re-instituted practices that I had lost track of, such as meditation and mental trips to the gym. My focus now feels restored, and I am more hopeful about regaining lost abilities.

In working on my “From Nightmares to Miracles” manuscript recently, I came across some words that describe the challenge of continuing to believe in recovery despite evidence to the contrary. The way I put it was this: “when the person staring back at you from the mirror is barely more than half your normal weight and lacks the strength to hold or move a pencil or even wiggle a toe, belief in recovery can be difficult to maintain.” It takes constant due diligence to replace negative thoughts and emotions with positive ones and self-love. As I discovered early in the process of battling ALS, “The choice had become simple: believe, as the doctors had told me, that there is no recovery from ALS and die, or believe that recovery is possible and go about discovering how to do it“. I chose, and continue to choose the latter.

When the dark moments hit, it can be very difficult to stay the course. Recently, a fellow PALS (Person with ALS) was going through a difficult time that was challenging her will to continue the fight. In an effort to help, I wrote the following email describing what I do when things get tough:

My heart goes out to you. Times like this can be very scary. When I have faced such moments, I have found three things to be particularly helpful. One is to remind myself that it all comes down to one simple question, "Do I want to live, or do I want to die?" Doctors don't decide that, nor does a disease, you do! Every thought, decision, and action you take flows from your answer to that question. Each time I have confronted myself with that question, and reaffirmed my will and intention to live, I have come through it stronger, more focused, and in a better state of well-being - not always what I was hoping for, but always better. At times, there have been physical improvements, sometimes just a mental readjustment. But remember, where the mind goes, the body follows.

A second thing that has helped me through dark times is to put more energy into my affirmations and gratitude list. There's an old saying my colleagues and I used to use in our consulting work: "You can behave your way into a new way of thinking, or you can think your way into a new way of behaving." It took me about three years to really start believing my affirmations, but the more I practiced filling my head with them and other positive thoughts, the less room I had left for things like fear and doubt. Remember, where the mind goes, the body follows, and you can program your mind with positive thoughts.

The third thing that has helped me is a particular affirmation that I recite daily, and as needed: "I believe in living in the moment, total present time, going with the flow, and loving the challenges." Each time I have lost a bit of strength, I have nearly worn this phrase out reminding myself to stay in the moment. Observing a new physical loss as something that is happening right now, in this moment, rather than projecting it into the future as a permanent change, makes it a lot less scary, and allows you to keep your mind focused on healing. Using this strategy, I have often found that lost strength returns, including things like hand strength and breathing.

Unredeemed losses have occurred when I have lost sight of my intention. That's how I wound up with a feeding tube! I have been living with ALS for 11 years now, and there have been lots of ups and downs. At times I have needed a wake-up call to remind me to realign my behavior with my intention. Joining this group (Healers of ALS) is among my most recent wake-up calls. Your courage and honesty in sharing your history and struggles have been inspiring to me. I hope you choose to go on fighting, but only you can decide. It's a tough battle, but you can win it, and we are here to help.

Her response seemed to indicate that she found these words to be helpful. In my experience, whether it be living with ALS or dealing with other difficult challenges, I have always found that knowing what you want, being positive, and staying in the moment are key to a successful outcome. What do you think?

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?

They Don’t Talk to Me Anymore

Although the experience of not being listened to during my feeding tube surgery was untimely and painful, it is unfortunately also not uncommon. One of the most difficult challenges for me in dealing with ALS is that when your speech becomes significantly slurred and slow, even some of your closest friends and family give up on trying to understand you. Instead, they turn to someone else for interpretation, take their misinterpretation and run with it, or talk or ask about you instead of talking to you. Perhaps worst of all is when they totally ignore you, except for the occasional patronizing remark that addresses you as if you were mentally rather than verbally challenged. If I allow my mind to make this behavior about me, it can feel extremely frustrating, dehumanizing, humiliating, and dismissive. The message you hear is: “You are not important enough for me to make the effort to attune my ear to your impaired speech.”

The truth is that listening to and understanding someone with impaired speech and breathing requires an enormous amount of concentration, patience, and time to get accustomed to the sounds. For more than twenty-five years I was able to earn a living teaching people how to listen, because most are terrible at it. When the speaker’s verbal abilities are impaired, the difficulty of listening increases exponentially. Most people lack the ability and/or willingness to step up to the challenge. When I had clear speech and a strong diaphragm to propel its volume and pace, I could compensate for another’s poor listening skills with my own. Now I have to make other choices.

The first thing I do when I’m not being listened to is remind myself that it is a function of the other person’s limitations, not a comment on my value as a person. To be honest, this effort is sometimes preceded by some anger or frustration, but I always get there, because holding on to negative emotion is unhealthy and stressful. That would work against my plans of recovering from ALS.

Next, I assess how important it is to be heard and understood. If it is important, and I am at my computer, typing the message is an option. If I’m not at the computer and it’s important to be understood, I will ask someone who understands me well to interpret. If it’s not important, I will just let it go. The sad part of this process is that it severely limits my ability to participate in casual conversation and playful banter. I have to choose my moments. Modifying how I participate in conversation is but one of many adjustments that has come with the challenge of living with ALS.

Having people in my life that have the patience and concentration to attune their ears to my speech and pace is critical, especially when I am out and about where it can affect my safety. I am blessed with several family members, good friends, and aides, who take their time to listen and understand. Without them the challenges of communicating verbally would be exponentially greater.

There are some with ALS who have lost their verbal abilities completely, and have to rely on computers or other technology to communicate. These people are heroes to me. As someone who earned his living with his verbal skills, I cannot imagine being completely without them. That is one adjustment I hope to never have to make.

One of my hopes for this blog is to raise awareness among the able bodied of how they can unintentionally dehumanize or degrade people with disabilities, and what can be done to avoid it, and treat the disabled with dignity and respect. It is also my hope that the physically challenged may find insight and strength in dealing with unintended affronts to our dignity. Please share any stories and insights that this posting may have brought up for you. Have you done something well intended that may have offended someone? Have you hurt yourself by holding on to anger or resentment toward someone who wasn’t even aware they offended you? How might we turn those nightmares into miracles?

The Deed is Done!

This past Wednesday I left the house at 7:30 am along with my entourage of my wife Diane, my son Dan, my health aide Jimmy, and my friend Gil. We arrived at UMDNJ in Newark about an hour later. The surgery was scheduled for noon, but the hospital staff managed to fill up most of the three and a half hours with paperwork, x-rays and EKGs. I also had brief opportunities to speak with the doctor, anesthesiologists and nutritionist. By the time the whole thing was over, we finally arrived at home at 7:30 in the evening. It was a very long day.

All of the hospital staff was very nice and attempted to answer all of our questions. Unfortunately, they all shared one very sad characteristic – the inability and/or impatience to listen to someone with impaired speech. Prior to and after the surgery, my entourage made sure that I was understood and that my needs were met. During the surgery, however, none of them were allowed in the room, and the lack of hospital staff listening skill proved to be a disaster. I was supposed to be anesthetized to a “twilight” state, but I was fairly alert through the whole process. When I called out in pain as loudly as I could, I was completely ignored. In addition, the doctor kept leaning on the intravenous needle in my left hand, and ignored my frequent requests to stop. In short, the experience of the surgery was a nightmare. Fortunately, the end result was successful.

It is now two days after the surgery. While I have some discomfort, there has been relatively little pain. The experience of watching food enter your body through a tube is very strange, but it is not as disturbing as I had, at times, anticipated. The accumulated phlegm from previously inhaled food is gradually leaving my respiratory system, and I am already spending far less time on the cough assist machine. We are also learning how to maintain my raw fruit and vegetable diet using the tube. So the plan is working. About another week of healing, and life should return to something close to normal.

I want to thank all of the well wishers and supporters who called and e-mailed before and after the surgery. Your efforts have meant a great deal to me, and have helped to smooth this latest path of my journey in living with ALS.

An Update on my Intubement

The clock is ticking, which is both good and bad. While I am still wrestling with the idea of having a piece of silicon dangling from my gut, I am looking forward to spending far fewer hours of my day trying to expel food and phlegm from my airway with the cough assist machine. I am employing the concepts that I write about so often in this blog on a daily basis in order to adjust to this upcoming intrusion to my body. Every day I envision what it will be like having this new appendage, carefully focusing my thoughts on the gratitude for the increased time and comfort it will bring to my life.

Recent weeks have been filled with the details of my exit from hospice. We have been busy replacing equipment to reduce costs, learning more about the tube, and searching for a new afternoon aide. As January 19th draws closer, I wrestle not only with anticipation of the procedure, but also with the loss of my friend and aide, Lloyd, as a daily presence in my life. While I know he will continue to visit now and then, it won’t be the same as having his reliable support every Monday through Friday. For me, this is the most difficult part of the transition. His caring service and his unwavering belief in my ALS recovery have been an important contributing factor to my successes in living with ALS.

The search for Lloyd’s replacement is ongoing, but so far with no results. With less than a week to go, the pressure is on to find someone, and to remain calm in the process. Stay tuned! Meanwhile, if anyone knows any good jokes about feeding tubes, please share them.

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.

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.

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 http://www.healingwithdrcraig.com/

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.

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.

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.

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.

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.

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: http://www.articlealley.com/article_1411685_17.html.

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.

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?

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”. en.wikipedia.org/wiki/Motor_neurone_disease#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.

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.