Fighting ALS, Fueled by Faith

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  • 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.

  • Success – Memories Made

    This weekend was really great for all of us. As a reminder we were able to travel to Newport, California with my youngest daughter and meet my oldest daughter, husband and their beast of a dog! He’s a great dog and adds a goofy energy, perfect for a group of true animal lovers. We were able to take this trip through the amazing generosity of a family my daughter knows, who we haven’t had the pleasure of meeting. A three bedroom place that accommodated us all well, overlooking Balboa Island and the Ocean – someone please try to tell me God wasn’t involved in all of this!

    We did what we coined a “Johnson” trip, meaning food and the beach were the main focus. We went to Crystal cove Beach two days and the other day went to a beach a stones throw from the condo. All were great! Crystal Cove reminded me of going back in time – what going to the beach 40 years ago would have looked like, Yes – there were crowds but the vibe was relaxed and there were kids playing everywhere. This was good for the soul. On Saturday morning we went to the Laguna Beach Farmers Market. California farmers markets excite the souls of my girls. This one has become one of our favorites because it has amazing yogurt, coconut milk, pastries, fruits and veggies and flowers. This time we found great pies as well. And of course about every tenth person has a dog, which seems to be a magnet for my girls, regardless of how cute they really are. We always buy more than we can eat at the market, it’s kind of the whole rush of energy to get all the goodies before they run out. Can’t let that happen!

    At my stage of dealing with this disease, energy management and walking amounts are the main factors. On average, according to literature and discussions, a person with ALS burns about 3 times the energy just sitting in one location than they would have without the disease. So imagine how quickly you get tired in actually doing things. It’s real. Also for me, this all started with weakness in my legs so I have to be thoughtful of my legs abilities. With each activity we experimented a bit. We are “dialing it in” and through the understanding and grace of my family I am able to be involved in all of it.

    As we pack up to return to Las Vegas, a few things come to mind. The first is that God is good all the time. This can be hard to embrace in the storm but if you look around just a bit, you can totally see Him with you and at work. The second is that there are no coincidences. The longer I live the less I believe in coincidence. God is always working and many times there are things happening that we just can’t see or don’t know about. The third, and particularly important for me right now is that I have a choice – a can or can’t choice. Our brains are powerful and can convince us that we can’t do things that we really can. True, I cant run a marathon right now but I can be active and make memories. I can fight ALS and win. I can love people and point them to Christ even when I am exhausted.

    Go to the beach – done. Go to the Farmers Market – done. Eat more than a human should – done. Love on the family and make memories – done. Trust God – done. Embrace this part (ALS) of His plan for me – still working on it.

  • A New Morning

    This morning I am with the family in Newport Beach, California. My daughter goes back for her final year of college in Ohio soon and we really wanted to get to the beach before she went back. It’s been a challenging summer for us all and she has been incredible, as have all of my family and our community during this period of adjustment. I also wanted to see my California kids, my daughter in particular in whose mind my illness is always close at hand. Time to make memories.

    But there is something about looking over the ocean that causes me to feel small, in a good way. I mean how can you not? Looking over this vast, beautiful, mysterious and dangerous place has always put me back into proper perspective – the world is a lot bigger than my everyday reality. I thank God for giving me things that expand my world when my mind wants to shrink it in order to gain control.

    It is my first full week of retirement. I have adjusted faster than I thought. I guess when you are going from appointment to appointment and fast tracking “new” you don’t really have time to process, and that may be just fine. I loved my work but it was never my identity, which I thank God for helping me learn and apply.

    I met with Social Security and applied for Social Security disability and Medicare. That’s weird to say but it’s true. For people with ALS, it is one of two diseases where you are immediately qualified for any benefits you may get, in my case it will be the Medicare piece only. I am grateful for God providing a fantastic pathway via close friends to penetrate what can be enormous bureaucracy.

    We are blessed to live in Las Vegas in that we have found ourselves with easy access to Synergy Healing Center. Synergy provides solutions that are not available in traditional medicine. It focuses on quality of life enhancement and also hope for longevity improvement for its patients. I have chosen to go down this path and have been impressed. There are people from all over the country, and world I am told who travel to their center to receive care. They are lovely people that are looking for and experiencing benefits from their treatments. This week I went two days and had eight treatments. I am excited and have a two visit per week regime planned for the near future. More to come as I go down this path!

    There are two medications approved for ALS, Riluzole and Radicava. I have been prescribed both. We have decided to take the Riluzole and are evaluating the Radicava. Radicava is a very expensive medication and we want to be sure it is the right choice for us before making the financial investment. Please pray for clarity in this area. Any perspectives are welcomed.

    As I mentioned I am in California. Time to go make some memories, share some love with anyone I come across and enjoy the victory that I already have as a follower of King Jesus!

  • The Rear View Mirror

    One of my favorite things to do is sit outside first thing in the morning on our patio. The backyards here are generally not that large but nicely ordained. I typically wake up with more energy and love that feeling. On this morning I am reminiscing on our journey over the last six months. It’s a story of God’s faithfulness and our frantic and circuitous path toward a diagnosis.

    In December of 2024 I began to notice a few things, unexpected weight loss, leg muscle cramping and a heightened sense of fatigue. I remember telling my wife that the ski trip we were going on with the family might be a wild ride based on all of this. God was faithful and I was able to fully participate and make an incredible memory. At this point I was thinking that I’m getting older and maybe not working out as much as I should, basically taking a typical man approach to it all. By January there was no ignoring all of this. I started with my primary care physician and we began looking into drug interactions and replacing drugs like the statin I was on. Not much success. All of that takes time so we find our self on Valentines Day with no progress, worsening symptoms and the realization that something bigger is going on here. It was a very emotional Valentines Day for us, and not the emotion the day is supposed to arouse! I remember on this day putting in all of my symptoms into ChatGPT and it telling me the diagnosis would be ALS. I knew from that moment on, somewhere deep in my being that this would begin my journey with this disease.

    That’s when the real hunt began. All of my blood tests and scans were coming back negative, indicating I was healthy. We self referred to the rheumatologist, neurologist, cancer specialist, and spine/brain specialist. Several MRIs, Cat Scans and blood tests later we still had nothing. Because of this we started to pursue the Mayo Clinic complex care program, a program available with our insurance if you cannot find the cure. We were also working hard to get into the only neurologist in Southern Nevada that could reliably diagnose these complicated motor neuron diseases. During the week of June 23, we were off to the Mayo Clinic in Scottsdale, Arizona. Thirteen appointments later and in our last appointment we heard the dreaded diagnosis that I have ALS. Even though we pretty much knew this would be the diagnosis it was a gut punch. One week later we received a confirming diagnosis from our Southern Nevada doctor and the reality was unavoidable.

    As I reflect back on those scary and confusing times I can see God with me at every appointment, with every blood draw, with every conversation with my wife and kids, guiding and guarding our hearts. I can see him working in our finances, logistics, support and helping us know He is there.

    ALS is a very rare disease (about 1.5 to 2 new cases per 100,000 people per year) that is really challenging to diagnose. Our journey to diagnosis took just about six months and we thought that was a long time. The average timeframe we routinely hear to get to a diagnosis is 12-18 months. We praise God for an early diagnosis..

    As I sit here on my patio as the temperatures keep rising on my FIRST RETIREMENT DAY off! I find myself being thankful for telling this part of my story but believing this will be the last backward facing post because we are wholly focused on NEXT. God has my next already figured out. I have a role to play, there is Kingdom work to do and I need to eat all of the things my lovely wife keeps feeding me! Onward!

  • Hi There!

    I’m Dave and I am a 55 year old midwesterner who lives in Henderson, Nevada! I was recently diagnosed with ALS and the purpose of my website is to bring my family and friends along with me on this journey, bring awareness to ALS via a real persons unfiltered story and to bring glory to God through this journey of faith. I would love to have you join me!

    To begin with, I am not really sure I know what I am doing. I’ve never even thought of creating a website and just jumped into it with both feet. So I imagine I will learn as I go.

    A little about me: First and most importantly I am a Christ follower. I have committed my life to Him and work to serve him in all that I do. I have an absolutely amazing Godly wife who I met as a high school sweetheart at age 15. She is my soulmate and constant companion. We have four incredible children that all follow Christ and are grown and starting their own stories. I have a wonderful and supportive extended family and church family that we cherish. I am in the process of retiring from the best work environment with the best people I can imagine.

    I say all of this to say:

    God is in control and is allowing ALS to be a part of my story FOR A REASON.

    I am not a victim and have no reason to act as one.

    I am blessed beyond measure in all aspects of life.

    I have a part to play and will fight for quality of life and longevity.

    I will be focused on loving people and making even more memories on this journey.

    If that sounds like something you’re interested in keeping up with, then join in. I plan to update routinely with details on what we are doing to fight, love and create memories.