Last Thursday, January 30, we loaded both dogs into our car and headed north to Monterey, California, for my appointment with the UCSF ALS satellite clinic—offered to patients twice yearly. We are thankful it was a much easier drive than anticipated. Not until we were halfway to our destination did Jon tell me that Annie had fallen into our rain-filled pond just moments before we left home. Oh no! After he managed to drag her out of the pond, he hoisted all 72 pounds of her soaking wet body into the back seat. Poor Annie was not doing well but slept for nearly the entire two-and-a-half hour drive and continued to doze in the car throughout my three-hour appointment. We were so grateful our daughter, Kathryn, was able to take the day off work and drove south from San Francisco to attend with us. Sadly, it would also be the last time she got to spend time with our special Annie.
The ALS team evaluated me and offered suggestions on how to continue coping with the disease. My speech and swallowing have deteriorated since my previous visit. My limbs still function well, however, my breathing capacity has weakened which prevents us from taking the long walks to which we were so accustomed. The neurologist was reluctant to provide an estimated amount of time I may have remaining on this earth since each ALS patient progresses at different rates and in different ways. She does think I may still have at least one year.
Jon is doing a remarkable job of helping me with my tube feedings, changing the dressing once a day to keep the area surrounding the stoma clean and dry, doing some shopping on his own, and simple cooking for himself. His favorite food is microwaved chicken pot pies from Trader Joe’s. I can still eat soft foods with no lumps and pureed soups. For example, chicken noodle soup with peas, onions, celery, and other vegetables is wonderful, nutritious, and completely edible as long as it is pureed into one smooth texture. There’s a restaurant on the embarcadero in Morro Bay called Dockside. They make some of the best New England clam chowder. We purchase a quart size, puree it in our blender, and it turns into a nice meal for several days.
We appreciate and need your prayers as we navigate this uncharted course with our Ultimate Guide shining His light on the path He has chosen for us.
“Drink with a straw. This keeps your chin tucked and helps you control how much liquid you are taking in each sip.”