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.
14 Replies to “How’s it going with us?”
Leslie and Jon….you are in my prayers daily. Your strength and attitude are amazing. Much love to you
Oh dear Nancy . . . it’s your faithful, sincere prayers that help provide the stamina we need each day. Thank you so much. ❤️
So sorry about Annie. I bet little Emma misses her, too.
Thanks so much, Chuck. It’s been an especially rough week. We all miss our Annie . . . it’s just not the same without her sweet face and long, velvet ears. Poor Emma was really in the doldrums, but we’re beginning to perk up over here.
I am so thankful, and humbled, that you have invited us to walk along side you two during this very real time of trial. What struck me most about your latest post, was the affirmation that this is a “we” thing, an “us” thing – for both you and Jon. Such devoted love is a gift from God. You two exemplify God’s purpose of marriage…
“Therefore what God has joined together, let no one separate.” Mark 10:9
“With all humility and gentleness, with patience, bearing with one another in love, eager to maintain the unity of the Spirit in the bond of peace.” Ephesians 4:2-3
“A cord of three strands is not quickly broken.” Eccl. 4:12b
Praying you through
Katie ~ What is very plain is that I couldn’t do this without Jon’s patient, loving, and cheerful assistance. He exemplifies Jesus Christ to me every.single.day. A true servant in every sense! I am so blessed and thankful that God brought us together.
We have confidence in this – The Creator of each one of us knows before we are born how many days on this earth we each have. I know when we think we are going to die in a certain amount of time our focus often changes to where it should have been all the time. I think your focus has been where it was suppose to be long before ALS came charging into your life and your husbands. Your faith in God will bring you through and I know He who began a good work in you will complete it until the day of Jesus Christ. I tell God I am thankful for your life everyday and for the words you share. Faith is believing what we cannot see (but one day we will). Love ya!
Sharon ~ Thank you for sharing your words that encourage my heart. The road we are traversing is not easy nor pleasant, but we are reminded that God is close and helping us each day.
Thank you for this valuable update after your appointment in Monterey. The saga with Annie beforehand, then during the journey adds yet more intense feeling to the entire journey, both physical and emotional. On the other hand, I feel she was somehow sharing your suffering, and showing her gentle acceptance. We are so glad you can eat pureed foods, and have found nutritious and delicious means of satisfying the regime, with Jon managing his own diet. I have a saying on my bulletin board, ¨Nature has placed nothing so high that virtue can´t reach it¨. You are a constant example of how to flow with each day and each path of the journey. Continued prayers and blessings. Genevieve and Adolf
Thank you, Genevieve and Adolf, for enriching our lives through the depth of your understanding and compassion❣️
Thank you for the update on the two of you. Our Awesome God, gives us our spouses to complete us, into becoming one with Him. Knowing we can trust The One who guides our path, and gives us strength for the journey, is truly freeing❣️ We just had a lovely visit with Mark and Cindy Alvis, and I forwarded your link to her. They are both doing well. We called and talked to Barbara Draxler, too, and she is recovering from her second knee surgery and Tim is having a second melanoma removed from his head. We rejoiced in our forever friendships as we prayed for each other and you and Jon, too❣️
Thinking of you often and looking forward to hearing. “Come up hither.” Love and Blessings forever and always, Vicki and Gary
Vicki and Gary ~ Thank you for your continuing encouragement. ❤️
Mark and I are in the area for a few days. Vicki let me know of your illness. So sorry to hear. We will be praying for you and John.
So good to hear from you, Cindy. Thank you for your assurance of prayers. Vital to provide the wisdom and stamina we need to navigate this path. Blessings to you and Mark.