Stewarding the Pain: Dave's Journey with Post-Polio Syndrome (PPS)

“My legs forgot to walk” Three years ago, sometime in April 2021, Dave was going to a store near our office and suddenly both his legs gave out. He had to summon all his strength to stand up and with many breaks between steps, he finally managed to return to the office. Since that day he found that walking was very laborious and required so much mental concentration. He felt like suddenly his legs “forgot how to walk”. He also experienced muscle fatigue and general fatigue. Since walking required so much mental concentration and coordination (what to bring and what to do while in that particular area), it made him mentally fatigued as well. Initial Tests and Diagnosis So the following weeks were filled with Dave going to several doctors in Surabaya. It was still the time of pandemic, which added the difficulty to see doctors and get the tests easily, but we were able to see our neurologist and brain specialist to get some tests related to the brain. We also went to the cardiologist and the internist to get some more tests related to the stomach and organs, and to the orthopedic for some tests related to the legs motility. All the tests were good, which we were thankful, but the doctors were puzzled as they couldn’t figure out why. Dave had ankle injury a few months before that, but how could it affect so much?

Meanwhile, Dave started developing muscle atrophy on both legs and some parts of the upper arms. Muscle atrophy became a progressive inability to use affected muscles, regardless of fatigue levels. He noticed some shrinking of the muscles previously affected by polio (on his left leg) as well as in previously unaffected muscles (what we referred to ‘his good leg’). We were so saddened, but we kept looking to the Lord.

There were other symptoms too, which Dave had to endure, including some muscle pain typically presenting as a deep ache or muscle cramps and spasms. A Mystery Disease

In December 2021, the pandemic was slowing down, so we were able to fly to the US to see our children and to get a checkup for Dave. The specialists we were hoping for weren’t available, so we only were attended by a general practitioner. She did a few tests, and told us, that since she wasn’t able to get the specialists to see Dave, she said that Dave’s conditions of sudden muscle atrophy and how the brain seemed to forget to talk to the legs, could be the sign of Multiple Sclerosis, GBS, or other brain problems.

We returned to Surabaya and went back to our neurologist. The test for MS was about $1200, so we didn’t want to do it. We prayed so much and asked for our close friends to pray for us and with us. Godly and Timely Advice Finally Pastor Jeff said we should go to Singapore to get a checkup. We talked to our dear friend Dr. Liang Wei from Singapore and explained the condition to him. He told us to come quickly because it could be a certain type of an autoimmune disease, and if it were to be true, then the treatment would need to be immediately since by this time Dave had already been about 1.5 years of struggling with this mystery disease. Dr. Liang Wei called his friend, Dr. Andrew, who was also a Christian, to help us.

A Hard Diagnosis So we went to Singapore on November 18th-21st, 2022. Dr. Andrew confirmed that it wasn’t Multiple Sclerosis nor any brain problems. Also he was very sure that this mystery disease wasn’t autoimmune disease, although he didn’t test for this. But he was suspicious that it was Post-Polio Syndrome. So he ran some tests for it, and asked his friend, a specialist in Polio, to check the results.

And it was confirmed. The mystery disease was indeed PPS, the Post-Polio Syndrome. We thought, how could it be? The effect of muscle atrophy was more prominent in the good leg, not in the polio leg. Post-polio syndrome (PPS) is a condition that affects individuals who have previously contracted polio, typically occurring decades after the initial infection. For Dave, this showed up more than 40 years later. The primary symptoms of PPS include fatigue, muscle weakness or atrophy, and muscle and joint pain. The consequences are difficulty walking, a reduced range of movements, and new ways to managing energy, to name some.

Dr. Andrew explained that when Dave contracted the polio, the 'houses' of his nerves were also affected. Some of these 'houses' were broken because they had to work extra hard. The muscles had been working extra effort compensating, and finally they gave out. The rest of the muscles we would have to preserve which meant Dave wouldn't be able to exercise to train muscles. That would make the muscle atrophy worse. Dr. Andrew was so sad. This was a hard diagnosis for us and for him too. He was hoping that it would be something else, because then he could find treatments to cure it. But with PPS there is no cure. Doctor’s Profound Statement PPS was basically a big loss that came so suddenly upon us. We both grieved and shed tears.

Then he told us how to manage PPS symptoms: 1. To organize activities to avoid overexertion; 2. To incorporate regular rest periods to alleviate fatigue; 3. Additionally, Dave would need to try various treatment approaches, such as physical therapy, pain management strategies, and assistive devices, to help him effectively manage his symptoms and maintain quality of life.

4. To keep the faith by looking to the Lord and trusting Him.

Before we left his office, Dr. Andrew said something very profound: “God will choose the way that brings Him the most glory: either His healing or journeying this path with Him.”

Wrestling with God The next day was Sunday, Nov.20, 2022. We were in our hotel room, listening to Pastor Leighton Gallagher from ICA preaching. The title of his sermon was “Wrestling with God”. It was about Jacob wrestling with God, where God broke his hip and Jacob became Israel. Pastor Leighton shared, “We need to come to the place of abandon – where only God matters. Self-emptying, to have the mind of Christ. Brokenness Proceeds Breakthrough. The old identity is shed. Jacob became Israel.” He continued, “We carry our own limp to remind us the changed course in our lives. Breakthrough is proceeded by brokenness. Jacob named the place Bethel- the house of God- a place of FIRST ENCOUNTER, a place of His presence.” After watching the sermon, Dave was needing to rest, which was an opportunity for me to go out and get dinner. I was relieved too because actually I also wanted to cry by myself without Dave seeing me. So I found a park nearby and cried to the Lord in such anguish; my heart was broken in pieces for him.

Then I felt God said, loud and clear in my spirit, “Say to Dave. Even though with your physical limitations can’t bring people to physical heights, but you'll be bringing people to spiritual heights, as you walk with your limp and usher others into the glorious presence of God to encounter Him.” I had my notebook with me, so I wrote that down, word by word. His Word gave me so much comfort after that.

“Also, Steward Your Pain”

When we got back to Indonesia, we grieved for a good two weeks. God was so good and faithful. He gave us comfort, peace and even joy each time we grieved. Sometime during the two weeks of grieving, I heard this, also LOUD and CLEAR: “Ani, I also want you to steward your pain well. Tell Dave this. When you steward your pain well, then I’ll BE GLORIFIED. And, you will not just go through the pain. You will grow through the pain.” We told our children and together we decided that with this pain, although we would continue to look to Him for His miraculous healing, until healing was manifested in Dave, we would steward this pain, for His glory and purpose and for our growth.

If You’re Suffering Right Now If you’re suffering from something, give your pain to the Lord. Steward it well. This means you keep your heart from being bitter and angry. Steward it by finding His presence and His comfort. Steward it by giving Him a sacrifice of praise. Steward it by walking in the fear of the Lord and in the comfort of the Holy Spirit (Acts 9:31). Steward it by getting a community of believers to pray with you and support you in other ways. We do have a lot of people praying with us and loving on us. Steward your pain by trusting Him that He is in control. He will show you that He is still a good Father and Shepherd to you. He will come through again and again. I can tell you with all honesty that Dave and I have been growing so much in our faith and have become so much closer to the Lord and to each other from this PPS journey. Of course, we wouldn’t want this to happen to anyone, and we still believe with all our hearts for complete healing and recovery, but before this happens, we can still enjoy closeness to Him, changes in our character, and continual comfort, hope, and grace in Him. We can still offer a sacrifice of praise and walk in His peace, joy, and victory. If you need prayer, please reach out to us in the comment below!

Dave trying a device to lock his knee and provide support for the right leg. Spring 2023

Dave with another kind doctor who did the comprehensive tests and other matters. Spring 2023

#polio #postpoliosyndrome #faith #stewardship #stewardyourpain #purposeofsuffering

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