Fighting ALS, Fueled by Faith

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  • It’s a Merry Christmas

    This year has brought a lot into focus. The book of James says (paraphrased) we should rejoice in trials of all kinds because God is preparing us to be complete. Hard verse to understand and even harder to do. So here is why its a Merry Christmas at the Johnsons:

    Jesus is our Lord. We embrace that without exception amongst my kids and their spouses/fiancé. It’s the greatest gift there will ever be.

    All of my kids are here! And all of their spouses are also. We are missing one – and that matters to us – but it wasn’t possible for him to come and I know he is blessing his family with his presence on Christmas Day. I’m overjoyed with seven out of eight!

    With ALS there is a scale used to measure progression and since diagnosis I haven’t lost ground with my ALSFRS score. This is great and means I’m not progressing measurably. Praise God!

    I was able to retire with disability two weeks after getting diagnosed and, based on the God ordaining the circumstances, we will have sufficient finances to retire and fight, love and make memories.

    I have more support than we know how to utilize. Truly. Between my family, church family and friends, we are immensely blessed.

    I am more present than I have ever been. I’m not stressed about all of the Christmas hustle and bustle, expectations and the like. Simply being totally present with those God has blessed us with this Christmas is a refinement (completing work) I’ve embraced in this trial.

    We have grief at times for the challenges but we are choosing to rejoice in the trials because we know all of this isn’t the end. This Christmas I am reminded that we celebrate the beginning (birth of Christ) but our hope is in what’s been accomplished resulting in an empty tomb and in what is yet to come. With that perspective, I can rejoice in knowing He is in the process of making me complete.

    What more do we need? We hope you have an amazing Christmas and remember to embrace being fully present for what really matters!

  • Do you see what I see?

    It’s been quite some time since my last post. I’ve had two posts that have been developed and almost ready to send and then … the next thing happened. This theme is basically what I feel convicted to write about today.

    This may be obvious to many, but when you are struggling with anything – a health diagnosis, a loss, or a major event, life keeps happening. It doesn’t stop while you are trying to grapple with things.

    I had finished my long overdue post just before leaving to Indiana to visit my parents at Thanksgiving. I typically ask my wife to take a look at my blog posts before I publish to make sure Im not sounding to surly or lacking in clarity. While waiting, it started to rain. Now we had just experienced rain a week before this and had a minor roof leak that our roofer was in the process of repairing. So this larger rain event was not a welcome circumstance. We put tarps up on the roof and did all that we could but the rain was infiltrating the roof and going into the attic in multiple locations. In my condition I cant get up into the roof so that left my very capable lovely wife to be the towel and bucket brigade. It was a mess. She did an amazing job with the help of some friends and prevented any significant damage and also prevented any opportunities for mold to grow. We were dealing with this for an extended period of time.

    During this same time we noticed our wonderful Golden Doodle Honey, who was 13 years old, was coughing and not eating well. We rescued Honey at 7 years old and she blessed us richly for the 6 years we had her but we knew our time with her would end around this general timeframe. After the vet visit and results we were told she had significant lung cancer. We got home from our Thanksgiving trip and had a few good days with her while she declined rapidly and had to put her down. Knowing in your head that a beloved pet (family member) needs to be put down and experiencing it in your heart are two very different processes. That was hard for us both.

    In this same timeframe, we got news of two people we dearly love that both received cancer diagnosis. We were devastated to hear this news and I think it even hit closer to home due to the love and care each have shown us in our ALS journey. We are hopeful, prayerful and optimistic about both situations but we know this means a significant journey for each and we are committed to carry the burden (Gal 6:2) with them.

    So I can imagine you are thinking – I wonder what’s next – did his wife leave him, the truck get repossessed and did he run out of beer like any good country song?

    Thats not where we are going with this post. These were a lot of challenging things all in one short duration. Truly. But I think we have the choice to view them in very different ways. I believe how we process life’s hard moments is foundational to our mental health and also an invaluable spiritual barometer that we really cant obtain in any other way. We know there will be storms in life both large and small, but where we fix our eyes and what we see in that storm makes all of the difference.

    With the roof leak, God gave us the community and resources to deal with this situation so it wouldn’t become an overwhelming mess. He gave my wife the ability to do what was needed, He gave us a roofer that was willing to come out during the rainstorm and help us fix the tarping situation and He gave us good friends that could come over and help as well. We are blessed by the community He has provided and He was there with us in it all.

    In the situation with Honey, any of you that have had beloved pets before know there is a struggle as to when you actually decide to put them down. The sweet spot of not to early versus holding on to long and having them suffer is a challenging decision to navigate. God made it so very clear to us exactly when we needed to make that decision and He brought an immense peace in that process that it was unmistakable. His presence was easy for us to feel during this.

    In the situations with our cancer stricken loved ones, both have found this early and have excellent medical care in beginning to deal with what lies ahead. While it wont be an easy path for either, God has been and will be present in their stories to help carry them through. Knowing He is in this with them has given us a peace beyond our understanding. And, Im praying, that through this trial it gives them each an expanded platform to share the goodness of our God.

    Nowhere in the Bible can I find that God promises an easy and trial free life. In fact, I think He prepares us for the opposite. But what He does promise is that He will be with us in all things. I think our tension is – are we seeking Him? For us, this makes all of the difference!

    Positivity Update: My buddies took me golfing last Saturday and it was incredible for me. Not my golf game – but the experience. Made me feel somewhat normal. I am so thankful to them. So a charge to you – if you have someone in your life experiencing challenges, consider grabbing them by the scruff of the neck and dragging them out to do something they love, even if it’s in a very modified way. You are caring for their soul, and soul work is rich ministry!

  • Community

    Incredible! I was so tremendously blessed recently by the strong presence of our community. We had the walk I have been mentioning for a couple of posts previous to this and the turnout (over 75 in person and many more virtually), love, and support was incredible. Thank you for all the participation videos sent from our community from afar! We loved them and they are so motivational! We raised over $18,000 for the ALS of Nevada, which will go directly to finding a cure for ALS and also helping families in need. I couldn’t be more grateful or honored.

    We all have good days and bad days. When you have illness there seems to be an amplifier on how good or bad. For me, the walk experience, pictures and videos will be a source of strength and comfort in the bad days for a very long time. This was a beautiful example of a community of imperfect people loving an imperfect person (me) but deciding that friendship and love matter.

    God created us for community. He did not create us to isolate. It seems as though many of the forces of this world are now focused on isolating us. Social media, judgement, divisiveness in politics, the ability to communicate without actually having a dialogue, and many other factors promote aloneness. Aloneness is not good.

    Another thing we struggle with is that people are messy. I mean we really are. The minute you get past the pleasantries and really learn much about the people you meet, things begin to unravel a bit. And the longer you choose to do life with them you really get to know who they are – that’s even more concerning. Maybe its their actions, morality, political views, status, religious views, or maybe their just weird. It is a perplexing and ever changing evaluation.

    Many of us have created this subconscious bar, a standard for those we will let in to our life. We create a typically false image of ourselves and expect others to measure up to a similar bar. If that test is passed then we allow that person to go from acquaintance to friend. That’s when we raise the bar again. For many, as the people in our life pass these tests we perform subconsciously, they move closer to or further away from our inner circle.

    Ultimately many end up with no inner circle friends and maybe not even any in the outer circle. This is not where God designed us to be.

    I write this as a conviction because I’m not sure where my wife and I would be in our ALS journey without community. What I have always valued has turned into a true passion. I challenge each of us to pray about and evaluate where you really are with community. Creating realistic expectations and putting in the work with others gives you a license to speak into their lives and opens a door for them to speak into yours. I guarantee it will have its messy and disappointing moments, but I’m convinced this is where the richness of community really blossoms and where God can do some of His best work.

    Be encouraged. You are loved. Find your tribe and love them hard! It’s so worth it!

  • Good Stuff

    It’s been a good bit from my last post, for all of the right reasons really. My wife and I had planned a two week trip to do a few things. Top of the list was to get everyone together to “witness” and celebrate my youngest daughter’s engagement! Yay!! We are so excited for them and absolutely love her fiancé . My kids from California made a huge effort to be there for the weekend and of course my Ohio crew was there. Proposals are a much bigger event these days than they were when I asked my amazing bride to marry me. There was a Rapunzel theme from the movie Tangled with lanterns by a waterfall and the whole bit. My daughter was overjoyed and we are off to planning another wedding! This will be our fourth and final wedding for our crew, all within four years. I am living proof that you can be happy and poor at the same time!

    Another part of the trip was surrounding spending time during my youngest’s Fall Break from school. We have always gone to Cedarville Homecoming from the first year my son attended. This year we waited a bit later to visit during fall break. I love Autumn, as I posted before, and was super excited to see the trees change. We rented an Airbnb in Rabbit Hash, KY. It’s a small (and I mean small) spot on the Ohio River about an hour south of Cincinnati. It was a cool and quirky rental that suited our family perfectly. We ate, ate, slept, sat by the fire and had fireside chats, ate, went to a couple of farmers markets and ate. Pretty much a hand crafted Johnson vacation. It was good for the soul.

    Lastly, we spent time in our young adult children’s worlds. Stayed with them, listened to what they are up to, saw where they go to shop and eat out, spoke of the rights and wrongs of this crazy world we all live in and genuinely enjoyed seeing them adult. So good. Being able to relate to their world is foundational and provides a richness to the relationship that you can’t get any other way. One funny caveat to all of this is that we recently had all of our old videos digitized. We had VHS, high 8 tapes, cds and probably other forms of media put on the cloud. We watched a bit of the home movies to the delight of everyone and realized while some things change, many stay the same. I haven’t laughed so hard in years. Pull out the old stuff and reminisce – it’s worth your time.

    Brief ALS Update: We are now about 3 weeks into changing our whole supplement regime and it’s making a difference. We found and have been in contact with a family where the dad had ALS that had progressed pretty far. They found a regime that worked for him and is what is now being called a documented reversal. Typically with ALS the best you are looking for is to slow or stop the progression, so actual improvement is a really big deal. There are many details available for any that want to hear what we are experiencing so please reach out to me via the comments and we will be happy to share. Suffice to say – we are as optimistic as we have been yet. We remain steadfast in knowing God is in control but we are doing our best to do our part.

    I wanted to end with another thank you for all of you who are supporting myself and the ALS of Nevada this coming Sunday for the walk fundraiser. I am blown away by the love and care we are receiving. We originally set a goal of raising $2,500 as a team. I think we are currently at just under $13,000. Amazing. I have family flying in, people walking in many other areas of the country and even an international team from the UK walking. I cannot find the words to express just how grateful we are for your support. It will be a fun event for those who can join and we will feel the incredible love and support from those who can’t be in person. Thank you!!!

    Today’s challenge: Tell someone you actually love, but have never said those words to, that you love them. It’s really not that risky is it? It will impact them greatly and likely you even more!

  • A Heart Posture of Gratitude

    A really nice morning for me is to wake up and pretty quickly find myself sitting on my back patio. I love to be outdoors and even though I am totally NOT out in the wild in my back yard, being surrounded by mature trees makes me somehow feel in touch with nature. The songs of the birds, the smells and the vast blue skies here are a gentle reminder that the world we live in is much bigger than my problems; that is refreshing for my soul. The weather has changed here and it is cooler – YEAH!! As you can tell the heat of the summer in Vegas is not my favorite. My wife, on the other hand loves the heat. Isn’t it interesting how two people can have the same set of conditions and react completely differently to them? I’ve joked with her that I need to get her a hot rock and a sun lamp to sun herself like a lizard in the winter, but that doesn’t really go over that well.

    Since I last wrote, we went to New York City and a Disney Cruise as I mentioned in my last post. New York City was better than I thought it would be. With my ALS condition I was very concerned about how I was going to actually get around and enjoy the sights. We were so very fortunate to have been given the name of a charitable organization called Team Gleason. They offer services for people with ALS and are fantastic. We reached out because the ALS of Nevada indicated Team Gleason had a program to provide loaner power wheelchairs for people afflicted with ALS. We sent them a message and within a month we had a brand new travel power chair delivered to our door at no charge. We brought the chair and I was amazed at how good it did with allowing me to go do ALL of the things we wanted to do. We saw Aladdin on Broadway, went to the Hugh Jackman concert, went to the bagel shop, walked/rolled Central Park, and went to Rockefeller Center amongst many other things. God blessed our time there with good health and weather. We then flew to Fort Lauderdale and met the kids. The truth is that I get emotional even writing this because having all of my adult kids in one place is beyond amazing, but to know they prioritized taking their limited vacation time and literally carving out space in active school schedules to be with us for a week blessed me beyond belief. We ate more than a human should, we dressed up as Pooh and Friends and pirates for the theme nights, we played in two torrential downpours as the ship dodged tropical storms and made great memories. For all of you on the fence just know that a Disney Cruise will not disappoint. So well done and worth every penny!

    We are now back in Vegas and actually planning a trip to Ohio to spend time with our family. Fall is my favorite season. We hope to see the changing of the leaves and plan to be present for just less than two weeks with them all and I get to see my parents, who couldn’t be more loving or supportive. I get excited thinking about it.

    I wanted to thank so many of you for supporting me and the ALS of Nevada in the upcoming walk October 26. Your generosity and love is so very meaningful. We have really done a great job in raising funds and are excited for a great showing at the walk. I am also so very excited that we have some other locations where folks will walk alongside the Vegas walk. We even have a walk occurring in the UK, organized and led by a fabulous friend and colleague in support of our team. But none of this would have taken place without the leadership of those that put our team together. Friends in leadership roles from my employer and from WaterStart, an organization I was honored to be a part of for many years. Thank you!

    We have changed supplement regimes again, based on an ALS reversal that we have learned about. Changes are not easy for my system but we are powering through. I was able to tolerate the high dollar medication relatively easily and we are hopeful that as I start round two tomorrow, we will have no complications.

    Thank you for all of the support you have shown me and our family. We are optimistic in our fight with ALS, but rest in the truth that through what Jesus accomplished, we have already won!

  • Making The Most

    About three years ago my wife and I came to The Big Apple (New York City) for business. We decided we really wanted to see Hamilton on Broadway during that trip. How cool, right? So I planned the trip and myopically focused solely on getting Hamilton tickets, coordinating dinner and all of those things. We went to see Hamilton and it was awesome. So very good! But at the end they do a fundraiser by asking patrons to put money into a bucket for a charity as they leave. They then mentioned they were competing in fundraising with “that other guy” and his show also on Broadway. Well, in my singular focus, I just then came to realize that Hugh Jackman was playing in Music Man at the same time a few streets over. My jaw dropped and I realized I had missed that opportunity completely. By that time the nights we would be in NYC were sold out and we were out of luck. I vowed to my wife that someday we would see Hugh perform live. Well, today we are in NYC to see Hugh in concert Saturday Evening. Most of the concert songs appear to be from one of my favorite movies, The Greatest Showman. Cannot wait.

    We are also going to see Aladdin on Broadway tonight. It seems fitting as a segue because after New York City we are flying to Fort Lauderdale to meet our kids for a 5 day Disney Cruise! We are so very excited for this as well. If you were to ask my kids what their favorite family vacation we have taken is, a Disney Cruise would be at or near the top of the list. For me, being with them all IS the top of the list. This will certainly resonate with the parents of “out of the house” children.

    I am on day 13 of my new medication. I take it for 14 days (one more day) and then am off of it for 14 days. It’s an unusual regime but I seem to be tolerating it reasonably well. We are making adjustments to supplements and learning more and more about how to fight ALS, which is very challenging.

    The thing that is occupying my thoughts is making the most out of every day. Sounds cliche. It is, until you really embrace what’s going on. Last week was a tough week for our country. The tragic loss we witnessed in full display of martyrdom was disturbing. I’m not the person to pontificate on this but what it reminded me is that we aren’t the author of our story. We have a role to play, and that is really important. We have a false sense that we are somehow in control. God is the author of all of our stories and we are called to make the most of every situation. Being present, loving others, calling evil what it is, and unapologetically pointing people towards Jesus.

    I wanted to also thank many of you for the amazing response we have received for the ALS walk. We have increased our goal at least twice due to your generosity and participation. We are off to make memories and live out the full life that Jesus offers today! Hope to see you all along the way!

  • Returning refreshed and focused

    In my last post I mentioned we were going to Kauai. Just returned after five days and let me just say that Hawaii never disappoints. The natural beauty and aloha spirit were abundant during the trip and once again reminded me of just what God can do. If He can create all that we saw on that beautiful island then He can cure ALS. If He will boils down to how we fit into His story and not the story we have written for ourselves.

    But … No matter what, we have a role to play. In my journey with ALS so far there has been one organization that has helped me immensely with disease specific information, support and resources. It is the ALS of Nevada. Their mission is to support ALS patients, caregivers and families in dealing with this disease. They were really the first point of contact for us right after we got the diagnosis. It was a lifeline. Since then we have fast tracked all of the things we never even considered needing based on their suggestions. They have visited my home and done everything from respiratory evaluations to mobility suggestions to physical therapy recommendations. They are equipping people afflicted with this disease to fight.

    On October 26, 2025 the ALS of Nevada has a walk to raise funds. Some of my dear friends from organizations I have worked with and also my workplace have put together a team to support the walk. There are actual walking in person opportunities, virtual walk opportunities and also donation only opportunities. If you go to the ALS of Nevada page and look for the ALS walk on October 26, you can sign up for a team. Our team name is H2hOpe. This name is a play on both our careers in water management and innovation while also focusing on providing hope to those who are affected by ALS. I will be walking along side those that are there. The bottom line is that you can know if you have a heart pull toward supporting, that your funds will go to a really good cause.

    We are starting to get a rhythm, which is a blessing. We are adjusting my supplement regime this week to help with unwanted symptoms. We are starting the new and very costly medication tomorrow – prayers for that. We are focusing on what can be versus what can’t be. We are so very thankful for all of your love and encouragement in this journey. Make the very best of every day and every opportunity!

  • Kauai Adventure

    About 23ish years ago my wife and I had the opportunity to take our firstborns (yes twins) to Kauai with our wonderful friends who are now framily (friends/family). The twins were 19 months old. I know for many, that immediately send chills up your spine thinking of a six hour flight with two 19 month old kids. Believe me, the others boarding the plane were hoping to have not drawn the short straw by having to sit by us. My wife, who is absolutely exceptional with young children, trained the kids ahead of time on “what we do when we get on the airplane”, which amounts to taking out your blanket and sleeping. It worked quite well and we arrived alive and reasonably rested! It was an amazing trip of natural beauty, a hula (not a Samoan war dance), Veggie Tales and my twins first soda ever on the beach! We reminisce about this trip often.

    We recently got an offer from the timeshare company for a “deal” to use our points to go on a shorter trip to Kauai. I booked it and then told my wife. Having a terrible diagnosis saved me from certain death in this moment – silver lining? So tomorrow we are leaving for a 5 day trip to Kauai. Fantastic right!

    As we have been getting closer to the trip I have noticed I was having a challenging time getting excited about it. Having ALS means your energy is severely limited, mobility is also challenged and you find yourself unconsciously comparing your capabilities to what they used to be. Unmet expectations typically lead to pain of many flavors. Not being able to get excited about things that used to excite you isn’t solely reserved for ALS – it happens for lots of people for many reasons.

    At the same time I am wrestling with this, I get a text from my good friend and pastor who says I need to check out the last ten minutes of a video he saw. I watched it and it spoke to me. Basically it reminded me that intimacy with Jesus doesn’t come from pain, it comes through submitting our pain to Him. I am learning in this journey not to submit it and then not take it back again. He can handle it and the beauty is He doesn’t want me to carry it around anyway, He wants me to fully submit it to him.

    After much prayer, reflection and submission I have transformed out of my funk and am really excited to enjoy a few days away in a beautiful place with my lovely wife and oldest daughter. Jesus reminded me that they care very little about what I can/can’t do and very much about just being together. More importantly I am now in the right heart space to create memories and hopefully be infectious for Jesus on the trip. I might even convince my wife to let me have a Coke on the beach!

    Who are you trusting to know enough about you and where you truly are at currently in order to be able to walk with you on your journey? I thank God every day for those He has provided – and I have embraced.

  • A New Season

    It’s been over a week since I last posted and I’ve missed writing down my thoughts and reflections. It’s been a busy time and I’ll do my best to transfer some of what God has been doing in our lives into this post today.

    For the last eight years in a row, this timeframe has been beautiful and challenging at the same time. College drop off. I don’t really think anyone can prepare a parent for the emotions you feel when you drop that first child off that first time, for us it was a double whammy because our oldest are twins. I remember our first drop offs eight years ago for my twins like it was yesterday. We had an emotional good bye outside of their dorms and then drove away, well not really. We got about a couple of blocks away for each and I had to pull into a parking spot because I thought I may wreck the car. All of us were wrecked with emotion and cried until we could actually collect ourselves and slowly drive away. It’s been a story similar to that with each child, each time. Well this last week was our final drop off for our youngest. There are always challenges with lasts and this is one we are still working through. Especially since her presence this summer has been an enormous strength to us as we have dealt with my diagnosis and major health issues and decisions with family in the area. God provided her to be at home at just the right time. For all of you reading this that are experiencing this – allow your kids to see your heart as you go through this. In the long run, they won’t remember the “stiff upper lip” you put on but they will remember your vulnerability and just how much it hurts you to separate from them.

    God has been alongside us in a mighty way. His provision of support, information about ALS, development of the right connections, and opportunities for us to share Him with others have been amazing. I have been feeling well. ”Well” means that I have reduced energy that comes with ALS but am learning to manage my actions and rest accordingly. Maybe most importantly I have done a reasonable job of managing my mind, which is not easy. I have the help of my wife and family and an amazing support system, who love and inspire at just the right times. On the harder days I have learned to give myself a little grace and be ok with being restful. Giving ourselves grace is something we all need to stop and meditate on. Since my ALS journey began in my legs, I am particularly focused on slowing the progression in my lower extremities and so far, what we have been doing has worked. I will share a bit more detail about that in the near future.

    This morning God has put on my heart Ecclesiastes 3:1. It’s time to develop a new rhythm in this new season of life. This summer basically everything has been turned upside down and we have had no routine whatsoever. We have prayed, adjusted, reacted and are now very desirous of getting into a rhythm. For those of you that operate better with routine you know exactly what I mean. If you want a way to pray for us, that is a good one.

    I also wanted to take a moment to thank all of you for your love and support, it has been amazing and we are overwhelmed (in a good way) by the cards, texts and innumerable offers of help. We love you all and you have made this journey much more bearable by knowing you are with us. It has helped our world from shrinking into self pity and reminded us to keep focused on the broader perspective; to live in the victory we already have. Off to live the adventure He has for us today!

  • Intentional Authenticity

    As many of you know, I am an engineer and have been blessed to oversee Operations in both chemical manufacturing and also the most amazing water utility organization. There is always a lot going on in these areas and you typically have responsibility for the most support staff in the organization, meaning lots of people and correspondingly tons of touch points. Almost without thinking about it, the focus becomes the work. Insidiously transactional. Many complex problems to solve and due to the 24/7 nature of operations, your work becomes inextricably woven into your personal life. The transactional nature of your approach permeates all you do. It is a bit of a fight to allow the human element to have its rightful, God honoring place in your daily life. It happens to varying extents with everyone I know in these types of roles.

    It seems the moment I got this diagnosis all of that changed. Of course I retired promptly from a job I loved in order to protect my health and live my priorities. But what I have experienced in the last month has been amazing and insightful.

    My eyes have been opened to a whole new community of people as I have immersed into the world of ALS support. I’ve also had several encounters with ALS patients and caregivers. Not one of these encounters has been transactional. It all begins with a check of how you are doing, where you are at and what you need. When you meet another ALS patient, regardless of their disease progression there is no transactional nature in the conversation. None of the stuff that blocks our care for each other. Just a pure and rich exchange from the heart. Sharing of contact information, how can I help you, can we get our caregivers to talk to support each other, what approaches are working for you and the like fill the conversation. It’s immediately real. It soothes the soul. God’s presence is undeniable.

    While I would have never authored my story this way, I do look back and wish I fully embraced this perspective earlier in my life. Many of my approaches would have been far less transactional. We have had enormous support in this journey so far but it is the people who we are human with that show up when your doctor classifies you as “permanently disabled” or you get that dreaded diagnosis. If you are reading this, stop here and marinate in this concept. Take risks, because there is risk in relationship. Take the time to hear and see people. Share your heart. It will change your life and likely someone else’s.

    I‘ve had several good days this week, I am inundated with caring support, and once again God is blessing me with resources, approvals and strategies on how to beat this disease. Each day is a step towards stability and a tighter grasp the victory I already have.

    Lastly, as I speak about blessings, today is Lisa and my 33 year wedding anniversary. Aside from knowing God, she is the very best thing that has ever happened to me. She is a warrior for the Lord and myself in this journey and I couldn’t love and appreciate her more.