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?
Monday, February 14, 2011
Monday, January 31, 2011
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 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?
Friday, January 21, 2011
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.
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.
Friday, January 14, 2011
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.
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.
Monday, January 3, 2011
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.
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.
Monday, December 20, 2010
A Tough Couple of Weeks
During my ten years of living with ALS, I have had some difficult days both physically and emotionally. Periods of illness (beyond the symptoms of ALS) have rarely lasted more than a day or two. For the past two weeks however, I have been struggling with symptoms of hypothermia that have taken my normally cold-sensitive body to new levels of chills. No one in the circle of medical professionals, who regularly visit me, seem to have much in the way of suggestions for cause or treatment beyond what I have already figured out for myself. Compounding the situation is what appears to be a continued deterioration of my epiglottis, making keeping food and water out of my trachea an increasingly difficult process. As a result, I am experiencing weight loss, dehydration, and coughing fits that can last for more than a day. After winning a battle to clear my throat of misplaced food particles, the battle often resumes with the next meal. All of this is very draining and saps my strength and energy for operating my wheelchair, toothbrush and computer.
In previous posts, I have written about the power of choice and the human will, the concept of surrender, the importance of a positive outlook, and other lessons I have taken from my illness. During this recent challenge, the strength of my will has been tested and the wisdom of my choice brought into question. There are moments as I write these posts when I ponder how many readers find me inspiring or just full of myself. If I am anything less than honest about my struggles as well as my victories, then the guidance that I try to offer on handling adversity becomes less meaningful, if not hollow.
So, I want to level with you that the weight of current difficulties has been extraordinarily challenging. They have generated thoughts that have not pierced my consciousness for years. I have found myself thinking on several occasions, “I am going to die”. Please don’t misunderstand. I have not given up, as these thoughts are quickly followed up by the thought, “Someday”. The point is that the battle between positive and negative thinking has been fiercer and more frequent of late.
One step that I have been considering more strongly than in the past is the idea of a feeding tube. Beyond the psychological blockage of having an artificial device sticking out of my body, I have three medical issues that I need information about to make a decision. First, I am concerned about the risk of infection from long-term use. Secondly, I am concerned about the possibility of regurgitation, which could pose a greater risk of aspiration than continuing without the tube. Finally, I need to know if it is possible to continue a vegan diet using smoothies and juices through the tube, which would provide far better nutrition than the formulas normally recommended. If any of you have the experience, either direct or indirect, to offer insight on any of these issues, I would greatly appreciate hearing from you.
In previous posts, I have written about the power of choice and the human will, the concept of surrender, the importance of a positive outlook, and other lessons I have taken from my illness. During this recent challenge, the strength of my will has been tested and the wisdom of my choice brought into question. There are moments as I write these posts when I ponder how many readers find me inspiring or just full of myself. If I am anything less than honest about my struggles as well as my victories, then the guidance that I try to offer on handling adversity becomes less meaningful, if not hollow.
So, I want to level with you that the weight of current difficulties has been extraordinarily challenging. They have generated thoughts that have not pierced my consciousness for years. I have found myself thinking on several occasions, “I am going to die”. Please don’t misunderstand. I have not given up, as these thoughts are quickly followed up by the thought, “Someday”. The point is that the battle between positive and negative thinking has been fiercer and more frequent of late.
One step that I have been considering more strongly than in the past is the idea of a feeding tube. Beyond the psychological blockage of having an artificial device sticking out of my body, I have three medical issues that I need information about to make a decision. First, I am concerned about the risk of infection from long-term use. Secondly, I am concerned about the possibility of regurgitation, which could pose a greater risk of aspiration than continuing without the tube. Finally, I need to know if it is possible to continue a vegan diet using smoothies and juices through the tube, which would provide far better nutrition than the formulas normally recommended. If any of you have the experience, either direct or indirect, to offer insight on any of these issues, I would greatly appreciate hearing from you.
Friday, December 10, 2010
An Inspiring Role Model for Dealing with Adversity
A few days after I wrote my October 23rd posting, “An Unfortunate Case of Myopia”, a friend of mine contacted me on Facebook to ask how one would go about encouraging the sources of research funding to channel some of that money to investigating effective non-traditional treatment for ALS. At the time, I did not have a very good answer, but within a few days, as if on cue, one was provided to me. Here is what I wrote to him: You could contact ALSA and MDA and suggest that they support Dr. Craig Oster’s efforts, and/or contribute to his campaign to develop research on holistic healing for ALS directly at 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.
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.
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