One Father's Extraordinary Journal of Living Longer with ALS
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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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”. 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.

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