Disclaimer: If you think we've made a poor decision or that we have sought a "quack" for treatment, please keep those opinions to yourself. I'm not trying to be rude, we just can't handle any negative thoughts, opinions, or people right now.
For months we've lived in darkness. Negativity and hopelessness dogged us at every turn. We spent our time divided between existing and preparing for the bleakest of futures. A future with Ray confined to a wheelchair, unable to speak or swallow, or even rationalize, was the best we could hope for. A future without Ray, the worst. Neither fits in to what is "fair".
We went to Tech in January for a second opinion. I guess I didn't blog about that. There was really nothing to say. Dr. Wilms is a fantastic guy, and obviously has a great heart. When he sat down with us to tell us that, unfortunately, he agrees with our physicians and that there was nothing that could be done for Ray, I really thought he was going to cry. I imagine Dr. Wilms is about Ray's age, and he has young daughters. Maybe it hit a little too close to home. It's odd to feel you should be consoling your doctor. I hate to sound callused, but Ray and I have heard it so many times, we're used to it. He did a blood test to check for vitamin E deficiencies, which came back normal, and scheduled a lumbar puncture (a.k.a. spinal tap) for February 7.
Just before our visit last week, my uncle called me. He and my aunt live in Lubbock, and since we were going to be there anyways, he wanted us to consider seeing a doctor that was a little different, but seemed to get results. At this point, I figured we didn't really have a lot to left to lose. We're going to meet our deductible this year one way or another, and it didn't seem ridiculous to meet it actually seeking treatment as opposed to getting more MRI's that tell us Ray is getting worse. Which we know without the MRI. After Ray's lumbar puncture at Tech, we met with Dr. Danforth. He's a chiropractor that practices alternative medicine. I promised my kids we would try "everything" to save their dad. He falls under that scope. So after Ray's lumbar puncture at Tech, we grabbed some lunch and some rest before heading to Dr. Danforth's office.
Two-and-a-half hours later, we left. Dr. Danforth was with us for most of that time - and Ray was picking up his feet when he walked out of the office (he's shuffled for years). The doctor gave us a lot of information in that "small" amount of time, and it really took me a few days to process it all. Basically, he feels that instead of treating Ray like an Alzheimer's patient, we should be treating him like a stroke patient. He explained women recover from strokes quicker than men because they build "program centers" or information on both sides of their brain, and in more than one place. Men are more likely to store it on one side, and in one place. Dr. Danforth never promised a cure, or even a viable treatment, but he promised to try. Which is more than we've gotten from any other doctor.
The best way I can explain it, he's using intensive physical therapy and nutrition (and some other odd things I just don't know how to explain...and you'd think I was weird if I succeeded) to help Ray's muscles and nervous system "remember" or "relearn" how to work. He has Ray doing exercises and stretching muscles. Ray is on a sugar control diet with no caffeine or artificial sweeteners (no Diet Coke for Ray!!), no grains, rare steak, veggies, and lots of water. I'm sort of surprised he hasn't asked Ray to give up Copenhagen, but maybe he knows that would be asking one thing too many. The diet isn't forever or Ray might throw the gauntlet down at that too.
Ray will see Dr. Danforth four times a day for all of this week, and will stay down there next week also though I don't know how many appointments he will have each day. Pat and Harold (my aunt and uncle) are taking great care of him and driving him to appointments. I'm at home taking care of both sets of my kids (my boys and my students), and taking some time to relax and recuperate myself. It's amazing how well I've been able to sleep since I got home Monday night. It's like the weight of the world has been lifted off my shoulders. I know this isn't a cure. I know we will still lose Ray eventually. But I have hope again. Hope that we still have more time together while Ray has a better quality of life. That smallest ray of hope has illuminated my entire world again. Even if it's dashed, I know that we tried.
I have one specific prayer request. Please pray this works. Please pray that Ray's quality of life improves. Please pray that he regains the ability to drive. Even if it's not in the next two weeks, but soon. It seems selfish and trivial, but considering where we live, the ability to drive gives us freedom, the ability to share tasks, and more time for each other and our kids. Also, please pray for our family, friends, co-workers, and our entire support system. We have been helped by so many people in so many different ways. Not just financially, but emotionally, spiritually, and with all sorts of daily tasks, our kids, our jobs, and the tons of prayers that are said for us. There are so many people praying for us that we know we are being prayed for constantly. The generosity of friends, family, and even complete strangers is more than my mind can grasp. There are too many blessings to count.
