03/25/2022 DR KOLB CALL

 03/25/2022

The call with Dr. Kolb was absolutely amazing! He explained the clinical trial process and wanted to see Jacob to check him for the possibility of SMA s(pinal muscle atrophy). We were hopeful that the ALS was a misdiagnosis, since SMA behaves the same, but is now treatable. Truthfully, this was a longshot, but Dr. Kolb wanted to examine Jacob in person. He explained that Jacob needed to be on one of the available ALS meds for 30 days before we could start the clinical trial. Available medicines were Riluzole, Radicava or Nuedexta. 

Dr. Hollinger recommended Riluzole. He felt Jacob would tolerate it much better than the alternatives.

Dr. Kolb explained that his administrator would be in touch with us to schedule our appointments.

03/24/2022 DR KOLB EMAIL

 03/24/2022

Dr. Kolb emailed me back within 24 hours and requested a live call with us on Friday, March 25 to discuss our options.

03/23/2022 2nd Opinion

 03/23/2022

Dr. Hollinger referred us to Dr. Robert Neel with the University of Cincinnati. Today we drove to Cincinnati Ohio for our meeting with Dr. Neel. He was able to confirm the ALS diagnosis within 20 or 30 minutes of a hands-on examination. Dr. Neil recommended a clinical trial for Jacob. He gave me the emaila clinical trial for Jacob. He gave me the email for Dr. Stephen Kolb of Ohio State University and was going to also give me the information for the University of Kentucky. One or both of those doctors. address for Dr. Stephen Kolb of Ohio State University and he was also going to also give me the information for the doctor at the University of Kentucky. One, or both, of these doctors were believed to be conducting a clinical trial for the exact genetic mutation affecting Jacob. 

I emailed Dr Kolb at OSU before we left Dr Neel's office.

At this point, Jacob is using a cane for assisted walking in an attempt to offset his severe limp.

03/20/2022 Winfield Baptist Church

 03/20/2022

We made the decision to announce our diagnosis in church today. We had upcoming appointments, one of which was to be a second opinion, so getting our church family behind us in prayer was our first priority

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03/16/2022 Diagnosis

 03/16/2022

Dr. Hollinger called to bring us into his office to discuss Jacob's genetic blood test.

When we arrived, we were taken straight back to a private room, where Dr. Hollinger disclosed Jacob's diagnosis. A generic form of ALS (amyotrophic lateral sclerosis or Lou Gehrig's Disease). 

We were not sure what his diagnosis meant, so we asked the doctor. He told us that most people with this diagnosis live 2 to 5 years. As Barb and I cried, Jacob grabbed his head and shouted no! Then my wife and I watched a peace wash over him… and through all of this, he never shed a tear.

The specific diagnosis, which was revealed from the Mayo Clinic genetic blood test, was a mutation of the FUS Gene (Fused in Sarcoma)... We would later learn that the 2 to 5 year life expectancy was reduced to a 1 to 3 year life expectancy, due to the aggressive nature of this genetic mutation. Dr. Hollinger encouraged us to seek a second opinion, and recommended Dr. Robert Neel at the University of Cincinnati.

03/02/2022 Genetic Blood Test

 03/02/2022

We were unable to complete the genetic blood test yesterday, due to insurance approval. However, our insurance stepped up, so today we headed back to Cabell Huntington Hospital for the genetic blood test which would be sent to the Mayo clinic for analysis.

On our way back home, Jacob's employer called him and terminated him over the phone, after assuring him that his job was secure (just two weeks before). This is the first time Jacob has cried throughout this entire ordeal.

03/01/2022 EMG

 03/01/2022

Today, we traveled to Cabell Huntington hospital for Jacob's Nerve Conduction Study/EMG with Dr. Hollinger.