Daniel turns 21!
We rescheduled our Mayo Clinic appointment for mid- November for a second opinion. And there it was confirmed that he has ALS. As of now, he is back to his pre covid self. Actually, he's doing better with swallowing and eating more since he learned how to more safely and efficiently swallow following a barium swallow while in the hospital. He doesn't have any other obvious symptoms. But conventional medicine doesn't offer hope for ALS patients. There are 3 drugs that are FDA approved that may add a few months to someone's life. He got immediate insurance approval for one of them and started taking it before our Mayo visit. But after several weeks he was having stomach issues and some other side effects. A week after stopping the medication he felt better than he had since before Covid and finally had an appetite again. So he's decided not to take that drug. Another side effect of it is also liver damage. :-( Other than those drugs, conventional medicine just offers help with coping with symptoms in the form of more drugs and assistive devices. The life expectancy is 3-5 years from diagnosis.
In the past several weeks we have been researching ALS reversals and all the different treatments those people have used to slow the progression and reverse symptoms. It's been encouraging but overwhelming to think of trying to implement so many different things hoping something will help. So we started researching functional medicine. These practitioners work with the types of nutritional and lifestyle treatments used by many ALS patients who have reversed their symptoms. Paul found a neurologist who also practices functional medicine in Missouri and who specializes in working with ALS patients. We have our first appointment with him scheduled for January 16th.
While this path of seeking healing gives us hope it will also require a lot of work, not to mention the traveling back and forth to Missouri. We will be seeking to discover any nutritional deficiencies, toxins in his system that may be causing symptoms and food sensitivities that may be leading to inflammation. We will be adjusting our diet to address those nutritional deficiencies mainly with food and where needed with supplements. This will mean eating a lot more vegetables and (probably) meat than Paul is used to eating (and we eat a pretty healthy diet compared to most people!) It will also mean eliminating foods that cause inflammation—definitely sugar, probably gluten, maybe dairy. If you know Paul well, you know he loves cheese!!! When I mentioned these diet changes to her, my mom reminded me of all the dietary changes I've implemented in our family over the years. First dealing with Jae's many food allergies when he was very young, then trying to address some of his other issues with food as he got older. Then Daniel developed food allergies (different from Jae!) and lactose intolerance. And then my own autoimmune skin disorder. I am able to be symptom free as long as I avoid nightshade vegetables. But discovering that took implementing an elimination diet to discover what my triggers were. She told me that maybe God had used all of that to prepare me for the biggest fight of my life—slowing and hopefully reversing and/or halting the progression of Paul's ALS with food. We've already begun reading about what changes this may require and started trying to increase our vegetable intake and researching recipes that eliminate certain foods. After the Jan. visit and testing we will know more about what specific changes we need to make. There will be other tests and treatments involved. We are signing up for a 6-8 month program of testing, implementing changes and supplements and whatever other treatments are needed and then retesting to see what is helping and adjusting from there.
We know that our God is able to heal Paul completely of ALS. He may choose to do this miraculously and instantly. Or He may choose to do this through the food He has created and using doctors and medical practitioners. We also know that He may not heal him in this life. But we are trusting Him to use this journey for our good and His glory.
“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.” Ephesians 3:20-21
So we were off to Missouri soon after Daniel's birthday. Since Memphis is sort of on the way to Ozark, MIssouri (where the functional doctor is) we planned to spend a night with the Paudlers and take Grandma with us and drop her off. Then spend a night on the way back and pick her up. It's about an 8 hr drive to Memphis and then another 5 hour drive to Ozark.
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