One Father's Extraordinary Journal of Living Longer with ALS
Joe's Blog: copied from From Nightmares To Miracles

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.

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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?

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