One of the things I have desperately missed over the past several years is our summer vacations in Cape May, New Jersey with our good friends, Joel and Jane Lubin. It was our tradition for nine years, until the energy drain and logistics of travelling with ALS made our rendezvous too difficult. By the summer of 2009, I had regained enough strength, energy and emotional balance to spark interest in trying to resurrect our tradition. After some intense investigation into managing equipment and access to buildings, however, it turned out that Joel and Jane’s vacation house in Virginia was a longer ride but a much more manageable alternative. It was the longest trip we had made in almost four years, but worth every minute. In their typical loving and supportive way, Joel and Jane did everything imaginable to ensure my comfort, safety and access during the five days of our visit. Jane also made sure that I had all the organic produce needed to stay on track with my diet plan, and Joel handled personal care when my aide, Jimmy, took his afternoon walks.
So, instead of watching the porpoises frolic in the surf while sunning ourselves on the beach at Cape May, we watched birds in the backyard while relaxing in their sunroom. We also took in the vistas and wildlife of Shenandoah National Park while driving along the Blue Ridge Parkway. In place of the Victorian architecture of Cape May, we enjoyed the gardens and surroundings at the Glen Burnie House in the Museum of the Shenandoah Valley, and learned more about the area’s history. We ate well, watched movies, talked, and most importantly, thoroughly enjoyed each other’s company. It is hard to find the words to adequately describe how uplifting and enjoyable it was to be able to spend extended quality time with them, and we are planning a return to Virginia next month.
Making this summer even more special, we renewed our rendezvous in Cape May this past weekend. We enjoyed meals together, took in the Victorian ambiance, strolled the boardwalk, and even caught a glimpse of a porpoise or two. Thanks to improvements in my health and the outstanding care and support from Jimmy, my wife, Diane, and Jane and Joel, Cape May has re-entered my life. It is one more example of things that have become possible again as I continue recovering from ALS.
Today is my 60th birthday, an event I never thought I would live to see back in 2003, when a doctor concluded that amyotrophic lateral sclerosis was the reason my right leg had been growing steadily weaker for three years. Refusing to accept the doctor’s belief that ALS must always end in death, I struck off in pursuit of alternative healing. After four years of experimenting, healing strategies that help began to emerge. My purpose in writing this blog is to share with fellow PALS (persons with ALS) what has worked for me, and to provide examples for anyone of how perseverance and positive thinking can help in dealing with overwhelming challenges. My recovery is far from complete, but I grow more confident each day that it is within reach. A recent article in a local newspaper portrays me as someone who is beating the odds. If you’re interested, you can find the article, "Local man with Lou Gehrig's disease beating odds", at : http://www.mycentraljersey.com/apps/pbcs.dll/article?AID=20106220302
As always, your comments are appreciated. What examples can you share of how perseverance and positive thinking have turned your nightmares into miracles?
Showing posts with label amyotrophic lateral sclerosis. Show all posts
Showing posts with label amyotrophic lateral sclerosis. Show all posts
Friday, July 2, 2010
Thursday, February 18, 2010
Evidence of Progress in Recovering from ALS
The list of techniques and remedies I have tried over the past 8 years is enormous. That is one of the reasons I wrote From Nightmares to Miracles. A person afflicted with a medically incurable illness can burn through a considerable amount of time, money, and energy trying to find alternative approaches that work. These are three vital resources that most people with ALS (PALS) don’t have in abundant supply. In the book, I discuss dozens of approaches including herbal remedies, vitamins, homeopathic treatment, electronic and frequency devices, spiritual healing techniques, exercise, diet, and more. I explain what worked for me, what didn’t, how I arrived at my current protocol, and why I believe that what I have learned has implications far beyond recoverin from ALS. While the same approach may not work for everyone, I believe there are elements of the practices I follow that have universal application.
It would probably help to alleviate some healthy skepticism by providing some evidence for my claims. So, let me give you some. Late 2006, was a huge turning point for me. My weight had dropped to a mere 99 lbs. This was barely more than half of my pre-ALS weight. My fairly athletic, 5’11’’ frame typically weighed in at about 185 lbs. prior to onset of the disease. By the end of 2006, my 99 lb., wheelchair- bound presence resembled that of someone who had barely survived Auschwitz. Every rib in my torso protruded though my skin. My arms had grown so weak that they required rest after two hours of moving a computer mouse. My skin was pale and dry, requiring lotion on a daily basis to avoid breakdown. Fatigue made afternoon naps necessary to get through the day. Restlessness in my legs from poor circulation made sleeping for more than two hours at a time a rare occurrence. Chronic joint and muscle stiffness and cramping interfered with sleep, and caused excruciating pain when being lifted out of bed in the morning.
Today, I weigh 138 lbs. Health practitioners are constantly amazed by the color and tone quality of my skin, and the complete absence of bed sores. Waking up during the night rarely occurs more than once to relieve my bladder. I rarely need a nap, and typically spend five to six hours a day at the computer, stopping for other activities vs. fatigue. Chronic pain is absent from my life.
All of the health care practitioners who see me on a regular basis find these changes astounding. Weight gain for someone in the advanced stages of ALS is extremely rare, as are the absence of bed sores for someone bound to a wheelchair. It is also quite common for someone with ALS or any life-threatening illness to suffer bouts of depression. I can assure you that my current state of mind is anything but depressed.
So by now, I would hope that this information has raised interest in your minds about how these changes have been achieved. In my next entry, I will begin to share what has worked for me in beating back the ravages of ALS, and handling life’s twists and turns with greater poise, patience, confidence and effectiveness. Stay tuned!
It would probably help to alleviate some healthy skepticism by providing some evidence for my claims. So, let me give you some. Late 2006, was a huge turning point for me. My weight had dropped to a mere 99 lbs. This was barely more than half of my pre-ALS weight. My fairly athletic, 5’11’’ frame typically weighed in at about 185 lbs. prior to onset of the disease. By the end of 2006, my 99 lb., wheelchair- bound presence resembled that of someone who had barely survived Auschwitz. Every rib in my torso protruded though my skin. My arms had grown so weak that they required rest after two hours of moving a computer mouse. My skin was pale and dry, requiring lotion on a daily basis to avoid breakdown. Fatigue made afternoon naps necessary to get through the day. Restlessness in my legs from poor circulation made sleeping for more than two hours at a time a rare occurrence. Chronic joint and muscle stiffness and cramping interfered with sleep, and caused excruciating pain when being lifted out of bed in the morning.
Today, I weigh 138 lbs. Health practitioners are constantly amazed by the color and tone quality of my skin, and the complete absence of bed sores. Waking up during the night rarely occurs more than once to relieve my bladder. I rarely need a nap, and typically spend five to six hours a day at the computer, stopping for other activities vs. fatigue. Chronic pain is absent from my life.
All of the health care practitioners who see me on a regular basis find these changes astounding. Weight gain for someone in the advanced stages of ALS is extremely rare, as are the absence of bed sores for someone bound to a wheelchair. It is also quite common for someone with ALS or any life-threatening illness to suffer bouts of depression. I can assure you that my current state of mind is anything but depressed.
So by now, I would hope that this information has raised interest in your minds about how these changes have been achieved. In my next entry, I will begin to share what has worked for me in beating back the ravages of ALS, and handling life’s twists and turns with greater poise, patience, confidence and effectiveness. Stay tuned!
Saturday, February 13, 2010
Welcome to From Nightmares to Miracles– Surviving ALS and Other Overwhelming Challenges
My wife, Diane, and I have been taking walks together for years. We find it a wonderful way to take in the sights, sounds and smells of the outdoors, get some exercise, catch up on things, and just enjoy each others company. One beautiful spring day in April of 2000, Diane noticed that I was dragging the toes of my right foot during one of our walks. Over the next several weeks, I became increasingly conscious that the leg was feeling oddly sluggish during workouts, tennis and other activities. The thought that this could be the onset of symptoms for a fatal disease never entered my mind until two years later when a motor-neuron specialist revealed his tentative diagnosis after an initial exam and testing.
Amyotrophic lateral sclerosis (aka ALS and Lou Gehrig’s Disease) is a disease of unknown origin that attacks the spinal cord and motor neurons, causing paralysis and death, usually through asphyxiation when the diaphragm can no longer function. There is no known medical cure, and little effective treatment. ALS takes the lives of 90% of it’s victims within 2-5 years. Of those in the remaining 10%, there are PALS (persons with ALS) who have been known to live 10 to 20 years or more. Stephen Hawking, the renowned physicist, is probably the most famous and longest living survivor. Dr. Hawking has been living with ALS for more than 40 years.
Why is it that so few live longer than five years? Are there any common factors among those that survive 10 years or longer? Unfortunately, there is no research to my knowledge that has pursued the answers to these questions. But I have some suspicions about the answers, based on what has worked for me.
Come this April, I will have been living with ALS for 10 years. During this time, I have explored an extensive array of non-traditional healing practices. The journey has taught me a great deal about ALS, myself, and handling adversity, and I want to share that knowledge. I have written a book called, From Nightmares to Miracles that documents my journey and what it has taught me. As a first time author, however, I am learning that getting published can be more of a challenge than writing the manuscript. So, while I am pursuing publication, I have started this blog to share what I have learned, with the added benefit that a blog allows me to continue my own learning through reader comments.
It is my hope that this blog will become a forum for sharing approaches to dealing and coping with overwhelming challenges. It is my hope that others can learn from my experience, and I from theirs. Your comments and stories are welcomed. Whether you are coping with an illness, a divorce, career derailment, death of a loved one, parenting crises, financial issues or other serious circumstances, this blog can be a place to share and explore what works to cope, survive and recover. Please help me make it a place where people can find hope, inspiration and ideas for dealing with their difficulties. Let’s create a space in which people can find ways to turn their nightmares into miracles.
Amyotrophic lateral sclerosis (aka ALS and Lou Gehrig’s Disease) is a disease of unknown origin that attacks the spinal cord and motor neurons, causing paralysis and death, usually through asphyxiation when the diaphragm can no longer function. There is no known medical cure, and little effective treatment. ALS takes the lives of 90% of it’s victims within 2-5 years. Of those in the remaining 10%, there are PALS (persons with ALS) who have been known to live 10 to 20 years or more. Stephen Hawking, the renowned physicist, is probably the most famous and longest living survivor. Dr. Hawking has been living with ALS for more than 40 years.
Why is it that so few live longer than five years? Are there any common factors among those that survive 10 years or longer? Unfortunately, there is no research to my knowledge that has pursued the answers to these questions. But I have some suspicions about the answers, based on what has worked for me.
Come this April, I will have been living with ALS for 10 years. During this time, I have explored an extensive array of non-traditional healing practices. The journey has taught me a great deal about ALS, myself, and handling adversity, and I want to share that knowledge. I have written a book called, From Nightmares to Miracles that documents my journey and what it has taught me. As a first time author, however, I am learning that getting published can be more of a challenge than writing the manuscript. So, while I am pursuing publication, I have started this blog to share what I have learned, with the added benefit that a blog allows me to continue my own learning through reader comments.
It is my hope that this blog will become a forum for sharing approaches to dealing and coping with overwhelming challenges. It is my hope that others can learn from my experience, and I from theirs. Your comments and stories are welcomed. Whether you are coping with an illness, a divorce, career derailment, death of a loved one, parenting crises, financial issues or other serious circumstances, this blog can be a place to share and explore what works to cope, survive and recover. Please help me make it a place where people can find hope, inspiration and ideas for dealing with their difficulties. Let’s create a space in which people can find ways to turn their nightmares into miracles.
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