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.

Return to Cape May

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

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

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

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

Gaining Strength and Counting Blessings

It’s been a good week! Last September, as I may have mentioned in an earlier post, an aggressive increase in one of my treatments caused me to lose about 90% of my already limited hand and forearm function. There were days when I could not move the joy stick that controls my wheelchair. Thanks to some adjustments in the treatment, continued detoxing, my nutritional and exercise programs, emphasis on affirmative thinking, the work of my healer (Jose), and good old perseverance, my arms and hands are completely back to where they were, and continuing to gain strength. I am even noticing additional strength in my shoulders and neck. It all became more noticeable this past week as I began to take easier and more extended strolls around the neighborhood.

Gains like this, of course, are what doctors will tell you are impossible for a person with ALS. And, if I am successful in continuing to reclaim mobility, doctors will most likely proclaim that my recovering from ALS is a miracle, and will ignore what I have done to achieve it. I am convinced that this will be the likely response from the medical community, because I have read and heard so many stories like it. This is one of my motivations for continuing with this blog – to get the word out that there are effective strategies outside of the traditional medical model that a person with ALS can use to fight it.

Another reason it has been a good week is that a reporter from a local newspaper put out an article on my story, providing further exposure for my successful battle against this disease. You can find the article, "Local man with Lou Gehrig's disease beating odds," at the following link www.mycentraljersey.com/apps/pbcs.dll/article?AID=20106220302. Please let me know what you think of it.

It can be a lonely battle at times, searching for effective, non-traditional healing practices that work in the face of the sometimes patronizing and skeptical attitudes, and lack of interest one often experiences from medical professionals. Each time I experience a gain like my recent increase in strength, I count my blessings that my perseverance has paid off, and hope that my example somehow benefits others with ALS or other difficult challenges.

Please let me hear from you.

Turning Nightmares into Miracles by Reframing

When you lose 90% of your ability to move, it can have a dramatic impact on your self-perceptions and your expectations about what you can do to have an impact on your world, and enjoy your time in it. As a management consultant (http://www.guttmandev.com/), I was accustomed to using gestures and my voice to teach people how to communicate and influence each other more effectively. Those capabilities are now gone. My arms can barely move and my voice is too weak to produce words with the volume, inflection and tone of which I was once capable. As a parent, I can no longer comfort my children with an embrace or speak to them clearly and quickly enough to offer efficient guidance. Favored recreational activities like tennis, hiking, and skiing are, at this point, only pleasant memories. It would have been easy, given these developments, to view myself as less of a human being, a mere remnant of the person I once was, now dependent on others’ arms and legs for the satisfaction of virtually every physical need. I am certain that accepting this view would surely have put me in the grave by now, and robbed me of further contributions to the world.

There are many factors that helped me to avoid this nightmare, many of which are discussed in my book. Ultimately, I had to shift my perspective, not so much about who I was, but how I might deliver my unique contributions to the world around me. There were several other perceptions that had to shift in order for me to reach that point. First, I had to reframe my understanding of my expectations for ALS. When the doctors told me that there was no cure, and the disease must always end in death, what I chose to hear was “I have no idea how to treat this illness.” This reframing led me to search for alternative methods of healing.

Another shift I had to make was away from the notion that I could not influence people without my arms, legs and voice intact. I began to notice that people were reacting to the way I was handling adversity. Through technology, I could still reach people with my words. By taking on the challenge of recovering from ALS, I could share what I was learning about coping with adversity through the computer.

Through the combination of: strong will; clear intention; the love and support of friends, family, and caregivers; the use of technology; the benefits of alternative healing; and reframing how I see myself and my abilities, I regained my capacity to do what I have always done – teach people how to be more effective in what they do and how they contribute to the world.

ALS has given me the opportunity to understand more deeply who I am and what I have to offer. It has also enhanced my creativity in how I go about it. By taking away my physical movement, it has forced me to find other ways to enjoy the world around me. Though I can no longer hike or ski, I have learned to employ bird watching as a way to preserve my connection with nature. By reframing how I connect with, contribute to, and enjoy the world around me, I have turned my nightmares into miracles.

Please don’t forget to comment on this post!

A Comment, A Comment, My Kingdom for a Comment

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

Ongoing Discovery in Recovering from ALS

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

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

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

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

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