Dear Friends and Family:
I recently read a quote that said, “hope is the only thing stronger than fear”. I have written and re-written this blog post atleast a dozen times. There are a lot of reasons why. But the truth is that it is a hard post to write. There have been many times in the past year, where both Ben and I were paralyzed with fear. We have faced denial, walked through acceptance, and gone through every stage of grief. We have bartered, pleaded, and then done it all over again. Now is the time to share what is going on with our friends and family.
This picture was taken in June of 2018 at the top of Bruneau Sand Dunes and was one of the highlights of that summer for our family. Ben had climbed to the top with our children so that I could snap a picture of their triumph. Later that month, he played in an all-day summer volleyball tournament as normal. When he awoke the next morning, he was abnormally tired. He slept for most of the day and later that evening while listening to his heart through a stethoscope, we knew something wasn’t right. In the ER, we were told that Ben was experiencing atrial fibrillation or A-Fib for short. Essentially the lower and upper chambers of his heart were not beating in sync with each other and he needed medical interventions to get his heart back in rhythm. He started seeing a cardiologist and was prescribed medications to control both his heart rate and rhythm. Over the next several months he struggled with their side effects and had more A-fib episodes. Examinations and tests of his heart revealed that there was no abnormality or defect causing his heart problems and doctors determined that he had “unprovoked” a-fib, meaning that it had no known cause.
In November of 2018 (one year ago), Ben collapsed at church. We spent the next four days in the hospital trying to determine what was causing his sudden instability, weakness, tremor in his right hand, and fatigue. I repeatedly asked for a neurology consult and was told it was unnecessary because his symptoms were likely due to his heart medications and A-fib and that once he was off the medications, they would resolve. They moved forward with that plan, put in an internal heart monitor, and referred us back to cardiology to consider an ablation of the heart to stop his A-fib. Ben was eventually strong enough to be discharged but even without the medications, he continued to experience weakness in his legs, fatigue, and tremors.
In February of this year, Ben underwent an ablation for his A-Fib which was considered a success. He no longer had to take a blood thinner because of his risk of having a blood clot. His weakness, fatigue, and tremors persisted however and knowing that something else was going on, we began to pursue opinions at the University of Utah, the Mayo Clinic in Phoenix, and a local physiologist who had treated his dad for ALS (Amyotrophic lateral sclerosis). New symptoms developed including muscle fasciculations, pain, cramping, and most recently foot drop.
Fast forward to this past week. This picture was taken only 18 months after he climbed Bruneau Sand Dunes with our children. He is no longer able to walk unassisted and uses a wheelchair for mobility. While there are still more tests to be run and doctors to see, the probable diagnosis of ALS is daunting and has impacted nearly every facet of our lives. ALS is a progressive neurodegenerative disease that affects the nerve cells in the brain and spinal cord causing muscle weakness and nerve death. There is no known cure however there are several promising clinical trials currently underway that offer hope.
We are trying to make the best of a really hard situation. Fortunately, Ben is still able to work for a great company and he loves his job. We don’t see that changing for a long time. His physical limitations are presenting some unique challenges. He can no longer drive, so I take him to work and pick him up. Our home is not designed for wheelchair accessibility and we do not have a car that can transport his power chair. Two weeks ago, we moved our bed to the front living room of our home because he is no longer able to go up and down stairs without great difficulty. He can only access our home through one doorway and because of both mobility and accessibility, he is now limited to the living room (where our bed now is), the kitchen, and a bathroom that takes great effort and risk to maneuver in.
Honestly, we have many big decisions that need to be made in a very small amount of time and feel like we are drinking out of a firehose most of the time. Here is what we do know. First, Heavenly Father and Jesus Christ are real, and they love us. When darkness, fear, and sorrow have threatened to swallow us whole, their love has brought light and hope. We will continue to cling to those promises! Second, we have the most amazing, resilient children. From teenage boys who help lift and maneuver their dad with me to little ones who spend time with dad playing video games, watching movies, and fetching water bottles, and to our adult children who regularly check in on us from afar and offer encouragement, love and prayers. We often wonder how we got so lucky to be the parents of these beautiful human beings. Third, we have some pretty awesome friends who have stepped in along this journey to hold us up and help us through it. Thank you will never be enough, and we love you. And finally, our primary care doctor (Mike Foutz) and the Muscular Dystrophy and ALS Associations and support groups have been amazing. They have brought knowledge, love, and support that have buoyed us up when we felt like we would crumble!
Many of you have asked how you can help. We feel so incredibly humbled by your offers! The truth is we are still trying to grasp the enormity of our needs. We are currently working on a list and trying to make the best decisions – remodel v. move, transportation issues, medical equipment, financial needs, and more. None of this will be cheap or easy but we are hopeful for the future and focused on making sure our children continue to thrive. Please follow our blog and Facebook page for more information coming soon. Until then, both Ben and I are humbled by your love and generosity.
Bridget, Ben, and the B Team