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.

02/25/2022 Physical Therapy

 02/25/2022

We decide on Teays Physical Therapy for Jacob's PT, and we have our first appointment today with his new therapist, Ben!

02/16/2022 First Neurologist Appt

 02/16/2022 

Dr. Jarred Hollinger at Marshall Health examined Jacob for the very first time. He prescribed physical therapy and scheduled an EMG and "light duty" at work for the next 30 days.

Jacob's employer forces him to take the time off, refusing to allow him light duty. They further ensure him that his job is secure and explained that they are only concerned with his safety.