A Year to be Thankful (2017) 🙏

Every year and every day is a gift.  The tune of countless heartbroken musicians says something to the fact of “not knowing love until it is lost.”  Well, that is true for most things we appreciate.  From cell phones to people, we often don’t stop to realize how important something is or someone is to us until we no longer have that thing or person around us.  (Two obviously different ends of the spectrum!)

I’ll say that this year started out kind of looking up for me.  That is until January 1st hit.  You see, I had spent most of 2016 trying to figure out some strange neuromuscular things going on with me.  Many doctors, tests, and blood draws later, I was left with possible diagnoses being chronic fatigue, fibromyalgia, mononucleosis, and was even told by one neurologist there was nothing wrong with me except I was really tired.  It would be an understatement to say I was frustrated.  However, by the time we went up to Colorado for Christmas last year (2016), it seemed I had established a new routine, albeit, even with less energy and a nap each day, I was finally able to feel somewhat normal.  The only odd thing I remember is driving back from Colorado.  About an hour away from home on a ten-hour drive, I had to pull over and let my wife drive us the rest of the way.  I was just exhausted and couldn’t move my right leg very well.  Odd but I figured I was just really worn out.  Nothing to look into, I’d already seen so many doctors and they had cleared me so really I just needed to push through fatigue as I had been.

A couple days later, I was feeling quite well and decided to tag along with my dad and brother to the annual Dillards New Years sale.  I’m not a shopper, however, that is where my wardrobe comes from.  It is 50% off of 50% off of whatever else it was already off.  It is the only way to buy shirts, pants and anything else you need.  Things were going well but I remember my legs feeling wobbly and my balance starting to feel strange.  I hadn’t noticed it too much that day but the day ended with my dad and brother locking my shoulder with their arms and helping me walk out to the car.  I slept the rest of the day.

At the end of January, I remember hearing my wife talk with some of our friends we were out with and I heard them comment on my walking.  What is wrong with my walk I thought?  I’m just strolling slowly, didn’t feel like going fast.  Instead, I guess I looked more like a drunk duck.  That must have been why my friend kept offering to bring the car around.  It wasn’t until February though, driving on the access road between my house and work, that I realized things weren’t working right.  While coasting down the hill in the truck, I went to apply the brake, only my leg barely moved.  My foot kind of worked but not enough to slow the truck much.  I pushed harder but if felt like I was leg pressing 50 lbs.  I quickly switched to my left foot and was able to stop the truck before the intersection.  Well, I thought, maybe I should get this figured out and take a break from driving.

This same month,  I met with a new neurologist, who turned out to be a specialist in neuro muscular disorders and ran for years the local muscular dystrophy clinic.  After he evaluated me, he remarked there was something going on with my reflexes and tight muscles and after a few puzzling results on tests, suggested I get an opinion from the Mayo Clinic in Rochestor.  By the time my appointment came around for Mayo Clinic in May, I was in a wheel chair to save my energy.  If I didn’t use it, I simply did not have the energy to function even with a stimulant medication and lots of sleep at night.  I was still taking naps for most of the afternoon and that was so I would have enough energy to play with my kids in the evening and eat dinner with my family before crashing again.

Lot’s of people have asked me what the Mayo Clinic was like.  You hear lots of great stories and I will say they are a highly efficient and very competent group of people.  Everyone was very kind and the doctors were very helpful and paid attention to detail.  After three visits back and forth, with multiple tests including a genetics test, I was sent back home with the probable diagnosis of some upper motor neuron disorder but no certainty could be achieved yet.  We did however rule out an array of genetic disorders as well as MS which kept popping up along this journey.

So, for the summer I was continuing to press on but the heat made things more difficult than I can ever remember.  Some days I couldn’t find the energy to get out of bed.  Very frustrating.  Also, while my legs had been giving me trouble, now my hands and left arm where also starting to wear out to the point I had to be careful how much I typed.  My arms would stiffen and I would move my fingers only with great difficulty.

This last summer, after my neurologist spoke with Mayo, he decided to send me to an ALS (Motor Neuron Disease) Clinic in Houston.  At first, I was a bit concerned as he said the Houston doctor was a friend, and you tend to think, oh, I don’t necessarily want a friend, I want the best.  Selfish and presumptuous, but that is the first thought I had. However, this doctor was much more on to things than anyone else in the past and hadn’t led me wrong yet.  I agreed to go and rule out ALS for good.

My dad drove me down to the clinic in Houston and I remember on the way down praying, “Ok, I’m about reserved that we are not going to have an answer on what this is, however, if it is going to be something like ALS that shortens my life, I sure would like to know.  However, if you don’t want me to know I’ll manage.”  I think I ended it with a “grrrrr” or something like that instead of “amen”.  By now you can see that things weren’t necessarily getting easier fatigue or movement wise and to go so long without an answer is taxing.  However, we were actually closer to an answer than I knew.

The clinic in Houston was unique in that they check you in as a hospital outpatient for the days you are there and you go in from morning until your tests and visits are completed in the late afternoon.  They have specialists ranging from cardiopulmonary to physical therapy to occupationally therapy and even social workers.  I had a doctor assigned to my case who spent an hour with me one evening on the phone going over my history himself and then he was my liaison the three days I was there.  The first morning I met with the head doctor who started the clinic.  Remember how I told you I was wondering if he would be the best doctor to see?  Turns out he is an internationally renowned researcher in the field of motor neuron diseases, particularly ALS and over a 40-year career has written 15 books and more than 400 articles.  His accomplishments fill up a book themselves but you get the picture.  He is one of the top authorities in his field.  So, as I found myself in a room with him and his staff of doctors and nurses, I remember thinking, there is no way these guys, as smart as they are, will let me leave without knowing what is going on.  I had thought that many times before in this journey.  This time I was right.

The third day I was told to expect a diagnosis when the doctor came to see me.  They had all of my previous tests, assessments, he had spoken with my neurologist back home about my case at length, and after their battery of tests, it was time for me to wait to hear their thoughts. At one point I had several doctors in the room, including the head neurologist, discussing my case in front of me like a panel and asking me questions.  Emotionally, you prepare yourself for the worst.  The moment the doctor came in and said he had some bad news but not the worst news, I instantly regretted having my dad in the room with me.  I’ve thought from the start that this has been harder for my parents and my wife than it has been for me.  However, thankfully the doctor told me out the gate, he does not believe that I have ALS.  Instead, he said, I have a more rare variant of motor neuron diseases called PLS or primary lateral sclerosis.  At this point, I was pretty advanced in my google medical degree, and believe it or not, I had heard of the disease.

He explained to me that it is a degenerative condition but is not nearly fatal like ALS.  It should progress much more slowly and it affects people quite differently.  Eventually it will probably affect most of my voluntary muscles but hopefully, that will be later in life.  I’ve started the process of voice banking so that if my voice is affected in the future I will still be able to communicate to those around me without the computerized voice.  I asked if there is anything I can do to improve the muscles, weight lifting, certain workout, diet, etc.  Basically, I am to do what I can but stop when my muscles tire.  Well, sadly that is not a whole lot compared to what the old me was used to for a workout. The physical therapist there told me that any damage I do to my muscles such as breaking them down in a weight workout will not repair as they normally would.

So, after a long process of doctors, tests, etc., I finally found myself with at least an answer as to why everything had become more difficult and why my body was so tired.  Unfortunately, there is no treatment to stop or reverse motor neuron disease.  There is a drug people take called Riluzole for ALS but it is thought to extend life by about 3 months in those who tolerate it well.  It does not reverse anything and last I checked is incredibly expensive. Bummer.

One way I could some up this year, and you might agree, is this is a turning point year for the worst. This is the year my body failed me, and as the doctor at Mayo told my dad, “Wade gets to experience aging just like you and I, only much faster and earlier in life.” Not the comfiest of thoughts for an active 32 year old with a young family. I could kick dirt, (actually that would wear me out too much,) blame and question God (many have and I get it), or flat out become bitter and mad and mean to everyone and everything around me. I had so much going for me before all of this hit. You know what the truth is to that last statement? I did have so much going for me and I still do.

I wrote this part of the story for two reasons. One, if you read this far, you were curious about the journey. I get it, I would be too. But the second reason is these are the milestones that tend to come to focus. Maybe better said, these are the milestones that tend to come to focus when we aren’t counting our blessings. Let me walk you just through an overview of what happened throughout this process. When I look back at 2017, I don’t see the year my health fell apart. I look back and I see nothing but how the hand of God moved through my life in incredible ways through His Church and the family and friends He has blessed me with.

When this started, I had a rough time at the hospital in Dallas getting the neurology department to take me seriously. They kept referring me elsewhere and elsewhere kept referring me back to neurology. It was trying. I finally just gave up. By December I had decided I wouldn’t go to the doctor anymore. In January, at the prodding of my wonderful wife, I went to see my new general physician. My original physician had moved and the new doctor ended up being about my age and perhaps over qualified to be in our small town. He observed my walk when I went in and sat me down. “I just don’t know he said. I’d feel better if you saw this neurologist in town that I’ve heard great things about. I’ll make a call and get you in. Something isn’t right and I really want you to make sure this isn’t some motor neuron disease like ALS.” He really got the ball rolling for me the second time and the referal to the neurologist ended up being the best experience with a doctor I have had. Unfortunately, my new general physician had to move shortly after he started his practice, but what a blessing he was. He had completed his residency at a sports clinic where they studied things like chronic fatigue and muscle diseases. He was at least aware of signs to look for and just happen to be in our small town. I still count him a blessing to this day. If you prefer to you can add that to the coincidence bucket if blessing isn’t your word of choice. You’ll need a big bucket by the way.

After meeting the neurologist in March, I was expecting an argument. I’ll digress from explaining what took place at the institution I visited in Dallas but it was less than professional on the part of the doctor. Instead, in walked a doctor who was older than the doctors I had seen at this point, and I only mention that to say he brought a confidence and wisdom into the room that definitely wasn’t in Dallas. We spoke for probably an hour and a half. For the first time since the summer of 2016, I had hope we might actually figure something out. In fact, he didn’t promise me it would be easy or quick, but he did say he would work with me all the way until we had a handle on what was going on. Ironically, he had run the muscular dystrophy clinic and had an astute understanding of neuromuscular related issues. He ran that for thirty years, which happens to be about the age of the doctor I saw in Dallas. Again, like the doctor at the Mayo Clinic told me, “Doctors can only learn so many things in the class room. The rare things like what we are looking at, they are learned in practice.” Well, my new neurologist had lots of practice. From day one his whole office has been nothing short of awesome. I simply couldn’t have asked for a better doctor looking after me. By the way, I mentioned earlier about his doctor friends credentials that ran the ALS Clinic in Houston. What I didn’t mention is that same leading doctor told me normally I would have to come to Houston for checkups every 3 months. However, his friend, my neurologist, is sharp enough and trusted enough that he does not need to see me but twice a year. Pretty special considering my condition is thought to be a total of around 500 cases in the entire United States. Liberal estimates may put it at 2000. Oh yeah, and did I mention the median age is around 55? I’m somewhat of a rare duck with this disease.

I should mention I’ve worked for my family’s small business for the last ten years. For the last five years I was the sales manager and had a great team built. With my health the way it was, many of my responsibilities fell to my team. Instead of frustration or complaining, every one of my team genuinely wished me well, checked in on me during this, and never made me feel awkward as I slowed down more and more. It would have been easy and natural to grumble about the “boss’ son” being a wimp and not completing his work. “Man up”, or “Everyone’s got their problems, deal with it on your time” could have been mantras you’d expect to hear. Not from my team though. Life hits everyone and at different times and different ways. I’m not glad for the trials people have to go through, but I am thankful for the understanding and compassion it creates. For each person on that team I count another blessing. They have been nothing but great to me throughout this ordeal.

I can’t forget the sweet care package our friends loaded us up with right before we left to Mayo. This was from a small bible study group my wife attended in our small town in the spring. We were given a surprise package with gift cards, snacks, encouraging notes and loads of other things to compliment our trip. Most meaningful was the sincere prayers on our behalf throughout this whole process.

The life group we are a part of at our church visited, brought and bought us food and have walked with us through this whole process. In fact, one of the coolest things to ever happen was a call Tabby got from our friends asking what they could do to help. She mentioned there was some stuff in our yard that needed help. I expected to feel terrible that our friends were coming out to finish work in the yard that I hadn’t finished. Instead, I stood in awe of the 30 plus friends, some who we just met that day, that showed up to help with our yard. They even brought a bob CAT out to help pull tree stumps. It was like seeing an episode of “Total Yard Makeover” except better. I sat watching the yard transform beyond what I had even imagined. I remember my daughter walking over to me afterwards and telling me she wanted to get married back there some day. This was a dream Tabby and I had talked about before either of our children were born.

With news of this ordeal, I was also able to connect with some long lost family members. Without this trial I may not have been blessed to renew those relationships. Our business friends from overseas were so kind to us throughout this. Checking in with my dad to see how I was doing, and one long time friend even sending us a substantial check to help out with medical needs and expenses. I’ve been truly blessed to have friends all over the world thinking of us, praying for us, and helping us out in so many ways.

This is not an exhaustive list. I’ve merely hit a few high points. Our family has been incredible and with us every step of the way. I’ve had to think about each day what is most important for the little energy I have. I’m thankful that my exercise is using what little energy I’ve conserved throughout the day to play with my kids. I’m thankful that I have the life that I do with the people around me. I have the greatest family and friends anyone could ask for. Most importantly, I’m thankful to serve a God who cares and reminds me of all that we have before us and what is to come.

I never really understood the very start of the book of James until this last year.

“Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance.”

‭‭James‬ ‭1:2-3‬ ‭NASB‬‬

Now I see the beauty in what is written. Yes, this has been a bit of a trial. But this year has tested my faith and produced an endurance I never thought I would have. This year has been a year that I’ve learned and remembered to be thankful for so many things.

I don’t go on an hour long biking workout on the way home from work anymore. Instead I have replaced that with wrestle time with my kids. Wrestle time involves me sitting on the floor in a dinosaur costume while they pummel me. I can still do most of my job from home, although I’d rather be at the office during work. Thankfully, the Lord has blessed me with a great and growing team who has skills beyond mine and are able to take over responsibilities I can’t keep up with as much as I could before.

It is easy to go on and on. This has taken me a while to write as my arms and hands keep wearing out. I laugh at that because this is not the last body I intend to have. Not meaning a hope for reincarnation on this earth, but believing the promise Jesus gave us of a new body in heaven with Him. I remember vividly a time in college where I struggled with my faith. Even at that point, my honest questioning of God resulted in an answer. Just like it was yesterday, I remember sitting on a bench on campus with a prayerful whining session so many of us have, and suddenly recalling “coincidence” after “coincidence” in my life. A flood of the massive amounts of undeserved “good” that has surrounded me. Hard to ignore the evidence in my own life that I knew first hand. I remember that day how much my trust strengthend. It is the same with this most recent development.

I’ve become confident that if we allow God to be with us through whatever life has in store for us, He will gladly be there. My hope and reason for sharing this journey is that you will be encouraged to see the good that God has put in your life. I am thankful for what happened in 2017. Not thrilled about the diagnosis, prognosis, or overall lack of mobility and energy, but instead I’m fired up about seeing the evidence in my life that God does love us the way He said He would. I’ll gladly expound on any of this should you have questions. For many, there are a lot worse things that were dealt with in this last year. Death, divorce, and the list could go on. I’m well aware that PLS is not the worst thing in the world. However, it is world changing for those who have the disease and similar conditions. When your world changes though, focus on the One who built it, watched it reject Him, and still loves them regardless. I’ll say with certainty, I’m nothing special and He has truly been with me on this entire journey. I’m looking forward to the next year!