ALS · Big Daddy

Layers and Tender Mercies

One of the (many) challenges with Ben’s disease progression has been some of the symptoms he experiences that don’t fit in to a specific neurological disease diagnosis. Our primary care doctor once summed it up by explaining that doctor’s often make a diagnosis from a checklist of symptoms and if those symptoms deviate or don’t fit the checklist, they are more likely to not diagnose at all or minimize the symptoms that don’t fit. Ben’s case is complex with many layers, some of which don’t fit these so-called checklists. This has often led to a great deal of frustration and if we are being honest, suffering on Ben’s part as he has tried to navigate services, medications, and management of these outlier symptoms.

Ben first noticed weakness in his arms and hands while building a greenhouse in our backyard a couple of summers ago. His muscles would burn intensely after just a short amount of time working. He also noticed it when using a can opener, putting in a light bulb, or carrying heavy objects. Slowly his grip in his right hand diminished. Fast forward to today and he can no longer hold his cell phone to his ear because it is too heavy. These are checklist symptoms of degenerative neurological disease.

What hasn’t been typical is the significant tremors and more recently myoclonic jerks. After his hospitalization in November of 2018, slowly the tremors have taken over his entire body. They started in his right hand and now they impact his voice, head control, arms, and legs. They are typically worse in the evening hours or after short amounts of exertion. They make it particularly hard to drive his power chair but if we are being honest, he is still better at that darn thing than I am!

To help you better understand, here is a little video of what these tremors and jerks look like…

Recently, we had encountered some roadblocks in physical therapy and we were going to be discharged from our home health physical therapy program. It was devastating to say the least. We desperately needed a therapist that was a neurological PT that could help specifically with the tremors. There is a possibility (although far stretched) that we may be able to temper them or resolve them completely. This certainly won’t solve the other challenges of his disease progression, but for the first time in a long time, the thought of relief offers a bit of hope. I prayed and prayed for direction and where to find the right physical therapist. Distinctly, the Lord whispered the name of one to my heart. Our boys had seen him in the past, he knew Ben before his illness, and we trust him. Unfortunately, he is private pay only and internally I groaned about how the Lord would put this therapist on my heart when we couldn’t possibly afford him. As usual, I immediately went in to problem-solving mode and decided to donate plasma twice a week as a way to meet this need. I scheduled my appointment and was excited to help Ben get started.

Our current therapist was going to discharge Ben and had scheduled a visit for Thursday afternoon. I had a full day of clients and teaching so I made sure Ben was dressed and ready for his appointment and buried myself back at work in my office. I glanced at the clock and had a free moment so I came inside to check on things. To my complete surprise, there stood the very physical therapist I had prayed about and whose name had been set in my heart. The one I could not afford but had made plans to make it happen anyway. He had recently taken a job with Saltzer Home Health and after discussions with our current PT and neurologist, would be taking over Ben’s physical therapy program. He did not know that we were current patient’s of Saltzer’s or that he would be visiting our home on that particular day while he was shadowing our current PT. He did not know that I specifically had prayed for him and that here he was standing in my living room! And yet, there he was!!

You guys?!? Why do I doubt?! What an incredibly humbling experience it is to literally feel His hands in our lives. Many tears of gratitude have been shed over this simple tender mercy. He knows me. He knows Ben. He is in control of the outcomes and the story. He hears me. He is going to continue to help us navigate the layers of this disease while simultaneously sustaining us through it. I might still have to donate plasma or jump through a million hoops but I will continue hold tight to Him.

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