08/09/2025 Wheelin' for ALS

 08/09/2025

Each year since Jacob’s ALS diagnosis, we’ve turned the trails into a beacon of hope. Jacob, a passionate Jeeper, lit the spark in 2022 with his vision for an off-road benefit ride. Unlike traditional walks, he wanted something everyone could join, even if they couldn’t walk. Our first ride raised $12,000 for ALS support. This year, on August 9th, we shattered records with $28,000. Scott Lloyd from Racing for ALS even gifted us the ADA-customized van we’d been using, a generous $90,000 gift. Through every twist and turn, our community keeps proving that together, we’re unstoppable.

07/29/2025 Havener Eye Institute

 07/29/2025

This was simply a follow up visit to Havener at OSU, Dr Pisano determined that the last set of lenses were perfect in doing exactly what they were designed to do. 

They scheduled Jacob for another 6 month follow-up. 

07/28/2025 TREATMENT #17 ION363 PHASE III #2

07/28/2025

Treatment #17! Everything went GREAT, blood work was good, although we ended up going down to the lab to have his blood drawn once again. 

We were able to use the AXON-R during the procedure, which worked flawlessly! I had to type Dr Kolb's question out on a computer, but the device displayed the questions perfectly and Jacob was able to answer without any hesitation. Doctor Kolb was a a different man. He was super exited about jacob's communication, responsiveness and alertness. He said he felt more strength returning! The treatment was perfect, but Dr Kolb actually hit a nerve when insterting the needle. This would prove to be very painful for Jacob for a few days And as with almost every injection, he had normal leg pain as well, which would persist through the Friday.

08/18/2025 Breaking Ground with the Axon-R

08/18/2025

On May 2, 2025, Jacob and I took a leap into the future with an exciting Teams call. Cole Heiner from Cognixion, all the way from their California office, introduced us to the Axon-R clinical trial. This isn't just any clinical trial. Jacob was chosen as one of only five people in the world to test a cutting-edge brain-control interface headset designed for communication.

The Axon-R, a brain-computer interface, or BCI, initially came with a hefty headset, but the weight caused Jacob's eyelids to droop, even with his custom scleral lenses designed to keep his eyes open. Realizing this, Cognixion adapted, swapping the headset for a lighter headband with electrodes along the back, paired with a Samsung Galaxy tablet. The headband was actually designed and created by my wife Barb, who did a tremendous job. She went through two or three iterations to get it just right, and Cognixion was extremely excited about the result. They will likely use it for other patients in the clinical trial.

Now, Jacob can engage with the Axon-R without the strain, as the tablet sits comfortably in front of him. We're in the midst of testing this breakthrough technology, hoping it paves the way for others like Jacob to communicate with ease. Each session, two or three times a week, is a step toward a future where technology and hope intertwine.

07/18/2025 No More Botox

 07/18/2025

We have decided to stop the Botox injections permanantly. In ALS patients with saliva issues, injections of Botox into the salivary glands, reduce slobbers and improve quality of life for approximately three months before needing repeated. Jacob's secretions will become increasingly difficult to manage, but we have elected to start using Atropine. 

• People with ALS often experience slobbers because they have difficulty swallowing saliva, leading to drooling. 
  Atropine's Role:
  Atropine, an anticholinergic medication, can help reduce saliva production by blocking the action of acetylcholine on muscarinic receptors in the salivary glands. 

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• Unlike Botox, there are very few "minor" side affects associated with Atropine, which is inteded to be used as an eye drop solution.

  
  
  

07/02/2025 Tracheostomy Change

07/02/2025

It has been 80 days since Jacob's last trach change. The plan was to go to OSU and see Dr Desilva for this change, But we have learned that our friend, Jeremy Cobb, has extensive experience in dealing with tracheostomies and has volunteered to come and do this change for us.

We elected to do it today with the help of Jeremy and Mark Toole. This change was the best yet! I believe part of the problem has been anxiety for Jacob. H
e was completely at ease for this change and everything went fantastic. Even after the fact, his peak inspiratory pressure stayed down and we experienced no issues whatsoever.

06/10/2025 PEG TUBE TROUBLE

 06/10/2025

Jacob's feeding tube pulled out this morning. His shirt was covered in blood. I deflated the balloon as flat as possible and reinsterted the tube. This bought us time to get to the hospital. 

The radiology department replaced it with a more streamlined Mic-Key button. We love this new design! So much easier for Jacob and us.