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Day 1 – January 7, 2025

Travel to Ecuador

Welcome! I am now embarking on my 16th trip to Ecuador to work with Dr. Jane Weaver once again. My last trip was in March of 2019. Almost 6 years have come and gone between the last trip and now!

In 2017 my dear wife, Phyllis, was diagnosed with a progressive neurological degenerative disease called Corticobasal Degeneration. This disease is quite rare and is included in the Parkinson’s Disease family, although it doesn’t present like Parkinson’s Disease. The same areas of the brain are involved with CBD as in Parkinson’s so that is why her disease is included in that family. In Corticobasal Degeneration the cells that control the motor or muscle function of the body slowly degenerate and atrophy. In essence, the brain disconnects with the body and voluntary movements are no longer possible. The changes take place over several years with the ultimate result is loss of ability to move all limbs, loss of facial muscle function, loss of ability to speak, and then loss of ability to swallow. The automatic functions, such as breathing, digestion, heart and blood pressure control remain intact. The person becomes trapped inside a body that won’t work anymore. The local reflexes between the muscles and the spinal cord remain intact and the muscles then go into spasm constantly. The limbs have both flexor muscles, such as the biceps, and extensor muscles, such as the triceps, with these muscle groups working together to allow a person to move the arm under the control of the brain. The muscles have the ability to contract strongly or very lightly depending on what the person wants to do. The flexors and extensors balance each other so that very fine movement is possible. When the brain can no longer control these functions, all the muscles go into spasm and the arm across the joint becomes rigid and immovable. Depending on which group has more strength will determine the final position of the limb. The biceps in the arm are stronger than the triceps so the arm will be positioned flexed at the elbow and wrist and held tightly against the chest. All of these changes were experienced by Phyllis.

There were milestones, so to speak, in the progression Phyllis experienced. At least these were noticed more by me. One such milestone was when she lost her smile. I loved her smile and when it disappeared and could not be produced again, this was a huge loss to me and a reminder of the seriousness of the disease. The loss of her ability to open her eyes was a final step that came only a few weeks before her passing. Another was her loss of ability to enunciate words. Her ability to speak became only making sounds and then that ability was lost. I assume that came from loss of ability to use her vocal cords. Not long after that change came the choking. Her tongue control was lost and any food taken in would often go down the trachea instead of the esophagus and then she would have intense choking episodes. She had determined well in advance of this stage that she did not want to be resuscitated if that need arose. I honored that request but I refused to stand by and watch her choke to death. That would be terrifying to her and very difficult to endure. So, I would resuscitate her by trying to dislodge the obstruction and restore easy breathing. I told her I could not just watch her choke to death. Eventually, she decided to stop eating and drinking altogether as anything she took in her mouth was aspirated. When we reached this stage, her progress was rapidly downhill and she took her last breath at 4:04 am on September 8, 2022. 

I was her primary caregiver all through this disease process. The disease started in 2012 with her first symptom. She lived for eleven years going far beyond the typical life span of the disease. Generally, people who contract Cortiobasal Degeneration live five to seven years. I believe key factors in Phyllis’ longevity is she stayed at home the entire time, she was in a loving and supportive atmosphere, and she was a woman of strong faith in Jesus Christ. Her goal was to see Jesus face-to-face and she longed to reach that moment. A few hours before she took her last breath as I was with her by her bedside and talking to her telling her how much I loved her, she suddenly opened her eyes and looked directly into my eyes. I moved my head a little and she tracked me with her eyes, something she hadn’t done for some time. She was listening to me and I told her that Jesus was standing at the gate into heaven and when He extended His hand to her she was to take it and go with Him. She couldn’t move her head but the look in her eyes told me she knew what I had said. I told her again how much I loved her and she closed her eyes and that started a rapid loss of regular breathing and her heart rate slowed significantly. In a few short hours, she passed on into the embrace of her Lord.

For me it was a moment of celebration for her instead of inconsolable grief. She finished the race and crossed the tape and now had complete victory over this diseased body. No more did she have to suffer the agony of not being able to smile, talk, and move. No more did she have to struggle. She now was at home with Jesus. For me, I was so glad she was now at peace. 

The grief came later hanging on for two years until I have felt better emotionally to do other things, such as head to Ecuador to work with my colleague and friend, Dr. Jane Weaver. I was somewhat surprised at the grief reaction that troubled me with bouts of depression and lengthy times of lacking any motivation to do anything. The house became very lonely and quiet. I longed to just turn back the clock to when Phyllis was still with me, even when she could not move or talk. Her presence alone was a comfort to me that I didn’t fully realize until the grief process. Missing her was a normal reaction, however, knowing she is physically gone permanently was hard to accept. I looked at other couples at church or other places and thought how fortunate they were that they had each other. Close friends who remained at my side still didn’t fill the gap that Phyllis occupied. It took two years before I felt I was getting on the other side of the seemingly deep abyss that stretched below me. With the Lord’s help, I have come through the challenge and now am entering what could be called a new normal. And that normal includes another trip to Ecuador to help deliver surgical care to the people in need there. Thus, I am now entering chapter 16 in this ongoing account of medical mission outreach experiences in San Lorenzo, Ecuador.

Today is travel day leaving home and flying to Quito. A longtime friend of Phyllis and me, Claudia Rosen, RN, is going with me to help with our surgical work. She was a classmate of Phyllis and I learned to know her when she and I attended Manchester College, now Manchester University, in North Manchester, IN, Claudia’s hometown. She was born in Ecuador as her parents were missionaries there at that time. Her family then returned to the States and Claudia is eager to return to her birth country. She was wanting to go sometime and this trip worked out very well for both of us. Claudia will meet me in Miami and we will then get on the big bird and fly to Quito.  Ecuador is in the same time zone as Eastern Standard Time in the US, which is the same as our time in Indiana for Claudia and Florida for me. That means we won’t have jet lag. We will overnight in Quito and then drive with Jane tomorrow to San Lorenzo to her clinic there. Our plans are to stay for two weeks while we help Jane with several surgeries and then do some sightseeing on our way back to Quito. Our return date is January 21.

I arrived at Miami airport about 3:20 and walked in to security screening.  To my amazement I went through this screening in about 10 minutes.  I then went to my gate with was only a short distance of walking and waited for Claudia to arrive.  Claudia texted me periodically to tell me her flight from Dallas/Fort Worth was being delayed because of some mechanical issue.  The delays kept coming and soon it became apparent that she may not make it in time to board the flight to Quito.  We both prayed hard for the connections to be made and Claudia would not have to overnight in Miami.  It got down to the wire.  I was onboard and the boarding process was to be complete by 6:30 with departure at 6:45.  6:15 came and Claudia’s plane had not arrived.  Then she texted me stating they had landed but not arrived at a gate yet.  About 6:20 her plane pulls up to the gate next to where I was.  She rushed off the plane, walked right over to our gate and was ushered on the plane just before the doors would close.  We were concerned her luggage would not have been transferred and would have to track that down the next day.  But on arrival in Quito, her luggage arrived on the carrousel.  All we could do was praise God for answering our prayers.  He did His usual, stretched us out to where we had no ability to handle the situation ourselves and then made things happen His way, only His way.

We met Jane at the airport and then traveled to a hotel near the airport where Jane arranged for rooms for us to get rested from our day of travel. Early in the morning Jane will pick us up and we will head to San Lorenzo traveling through the Andes Mountains on our close to 5-hour trip to our destination: Clinica San Lorenzo. San Lorenzo is located at the Pacific Ocean and the Colombian border in the far northwest corner of Ecuador. Our trip is a steady down hill, very scenic course from an elevation of 9200 feet in Quito to sea level in San Lorenzo.