The ALS Journey – Part 2

Changes

After 5 months of seeing a physician that was knowledgeable, but not helpful, we decided to get a second opinion at the Barrow Neurological Institute‘s ALS and Neuromuscular Disease Center . The process of getting an appointment was easy, although it took some time to get in. But, the wait was worth it. In the meantime, Jon transferred to a new division of the company and began working from home on April 15, 2024. That was a blessing for several reasons! He received a raise in salary, plus the savings in gas. Most importantly though, he is able to work whatever hours he needs to and doesn’t have to talk as much. This helps control the fatigue.

ALS & Neuromuscular Disease Center

We were told that the initial appointment would take around 2 hours. On May 20,2024, we went in a little apprehensive, but believing we were doing the right thing. They have a full spectrum of providers and clinicians that all work together to help the patient have the best quality of life possible and we met them all that day. The Physician, Physical Therapist, Occupational Therapist, Speech-Language Pathologist, Dietitian, and Social Worker. Their assessment was that Jon has Upper Motor Neuron Dominant ALS, which means that most of his symptoms come from the deterioration of the Upper Motor Neurons, but there are some symptoms that show Lower Motor Neuron deterioration as well. This differed from the previous doctor that said that only the Upper Motor Neurons were being affected and calling it PLS. They gave us an ALS Patient Guide, information on the ALS Association, along with many other handouts with helpful hints on how to manage symptoms. Jon felt seen, we felt heard, and left feeling like we were getting help. Labs were ordered, some medications were changed and scheduled a follow up in 3 months.

Summer of 2024

When you get a diagnosis that has no cure and you know that quality of life will continue to decline, it changes your perspective. So we decided to take full advantage of our summer and do things we wouldn’t have typically done otherwise.

We already had a trip planned to Tennessee for a wedding around Memorial Day, and we had decided to go to The Ark Encounter as well. We rented a scooter for Jon to ride around in so that he could see it all independently. That was an amazing experience! Then we were able to spend almost a week in Hendersonville with my brother and his family and see many of our friends. A positive of flying with Jon is that he now gets wheelchair assistance at airports which gets you through security quickly and first pick of seats on Southwest.

It took a week or so for Jon to start getting his “new normal” energy back and realized that getting out of his recliner was taking a lot of energy. We decided it was time to go look for a new recliner that had a lift mechanism. That was the first modification. Mid June, he lost his balance in the shower. Thankfully it was not a hard fall, but he went down and had a hard time getting back up. We had a shower bench in the garage from when he had foot surgery 6 years ago, so that went into the shower and we changed the shower head to one with a handle.

In August, we drove to Oregon, along with my parents, to see my Grandma Troyer and Aunt Alta. Justin and his family were there as well and we celebrated TJ’s 21st birthday with everyone. We were able to stay at the farm where I grew up, which is also the farm my dad grew up on. The family that bought it has done some remodeling to the house, but the upstairs bedrooms haven’t changed much. Jon and I slept in my old bedroom and Justin and Becca slept in his old room while the kids were in the other rooms. We spent time in the barn, picked and ate blackberries from the wild bushes, and just enjoyed the open space. Going back to my roots was good for my soul.

New normals

The 3 month follow up appointment at the ALS clinic was very similar to the 1st, although not quite as long. We met with all of the clinicians again and the diagnosis was confirmed of Upper Motor Neuron Dominant ALS with slow progression. They put an order in to start Physical Therapy and also for a Care Service Coordinator from the ALS Association to connect with us to help with more modifications around the house. That call was scheduled for the afternoon of September 3rd. I was running errands that morning, and Jon texted that he had fallen backwards off of the bench in the shower. Thankfully, he didn’t hit his head and only his elbow was bruised. The ALS coordinator assessed that we needed a shower chair with a back and arms, and also suggested a raised toilet seat with arms as well. One of the things the ALS Association has is what they call Durable Medical Equipment Loan Closets. These items are free of charge to use for as long as needed. She had a lot of good information and helped us remember that Jon has a limited supply of energy for each day. Getting up out of a chair, walking unassisted, showering, even eating take up a lot of that energy. These assistant devices help him conserve energy for other things he wants to do.

We were given an option to do Physical Therapy in a pool and the first session was Friday 9/27. He has to work harder to keep his balance in the water but he can work on things without the fear of falling. The therapist is helping him focus on using his muscles differently which should help when he is walking out of water as well. Thankfully, he is still walking independently, but uses a cane or walking stick when he leaves the house and in the house depending on how he’s feeling. The ALS association has supplied us with a Rollator Walker that he uses around the house in the mornings while his legs are loosening up and in the evenings when his legs are worn out from the day.

All of these things are difficult to watch and accept as our new normal. In all honesty, I have struggled with anxiety and worry the last few weeks. I know that God is with us and has surrounded us with people that can and will help us. I know that He will supply all we need. I know that He is good and faithful. I don’t think that it is a coincidence that our pastor started teaching on the book of Joshua this month. A Biblical account of a group of people that are being led into a land that they have never seen. The 9th verse of the 1st chapter is: “This is My command-be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go” (Joshua 1:9 NLT)

Lessons from this part of the journey