ALS Clinic Day

Follow us on our trip down to Gainesville this week.

Hi friends. I am still in recovery mode from our full week, so things are moving slow around our house. The hikers returned from the trail late Sunday evening, full of excitement and joyful memories; they said it was the best trip so far. I am hoping Wayne will help me to write a post to share about their hiking adventures soon.

On Monday morning, we hit the ground running, meeting with our friend who is an insurance agent, running many loads of trail laundry, unpacking backpacks and reaclimating to each other. And then Tuesday was Clinic Day.

I briefly mentioned the scope of the ALS clinic in my first Questions and Answers post, but it is pretty phenomenal, and I want to share our experience so you can picture what all happens there. For now, the plan is to drive down to Gainesville every three months, to the big VA hospital that is across the street from Shands. There is also a possibility that we will have some appointments at Shands itself, but for now, we have just gone to the VA hospital.

Part of me was very much looking forward to this clinic day. Wayne and I do not often have a day to spend together. We listened to our Bible-in-a-year podcast, talked about things on our hearts, enjoyed each other’s company. We also had a misunderstanding and poor communication at one point, leading to some tears and disagreements. We managed to sort through it all and were able to enjoy the rest of our day. I think any disagreements are surprising to me, because, with a terminal diagnosis, the little misunderstandings seem to pale, and life becomes more precious. I think I expected to live in the honeymoon phase perpetually. But thankfully, I had some good advice from a friend-of-a-friend a few weeks ago; she shared that things will not always move forward smoothly, even when we can see God’s hand miraculously at work, even when our perspective is eternal. It does not mean that we have missed the boat completely, just because normal human nature sets in from time to time.

So, back to the trip. After we arrived at the hospital, our first stop was the ENT department. No, this appointment was not part of the ALS clinic at all, not even related, but thankfully we were able to be seen on the same day. Way back in Wayne’s Recon training days, those crazy Marines practiced intubating each other, and one tube went astray in Wayne’s nose. Ever since then, he has had troubling breathing on that side. Yes, ever since. Over fifteen years ago. It is amazing what an ALS diagnosis can do for making things happen. 😏 So, the ENT nurse practitioner took a look inside Wayne’s nasal cavity with a scope, and while his right side looked perfectly normal, once he got up higher in the left side, it was almost complete sealed off by a polyp. Such a strange discovery. So he is now on a nasal spray to try and reduce the polyp, and he will have a scan soon to see if there are any others in his sinuses.

Once that appointment was finished, we headed upstairs to the ALS clinic. The nurse put Wayne into a room where we would stay for the rest of the day, while a rotating door of practitioners came in and out. The first visitors were the nurse herself and the doctor in charge. The doctor checked Wayne’s reflexes, used his own hands and arms as resistance to see how much strength Wayne had in his legs, feet, ankles, arms, hands, and fingers; he pressed on the side of each finger and had Wayne push back, pressed down on his feet and had Wayne lift his ankle, and so on. They recorded those results as well as our update on how things have been going. I am amazed at these providers. My normal experience with medical care has been less than stellar; I do not expect practitioners to really listen to me, or validate my thoughts, or act like they care. But this doctor and nurse really do. What a gift. The doctor also told us about two different clinical trials that are going to start soon at Shand’s, which he would recommend pursuing. We are thinking and praying about whether to participate, and if so, which one to choose. We would greatly appreciate prayer from all of you for wisdom and direction as we consider these options.

Next up, the “paperwork guy” came in. He has been incredibly helpful as we navigate the ins and outs of services and claims and grants and disability. I cannot imagine this process without him. A dear friend of mine shared her experience walking alongside someone else with ALS, and how very, very difficult it has been for her to obtain the services she needs. We have had the opposite experience; it feels like our road is paved and smoothed ahead of us, in large part due to this gentleman.

After he left, Wayne had to do his “PFT”. Now, for those of you who are familiar with the military PFT, you may be expecting some pull-ups, some sit-ups, a timed run... but this PFT was a little different. We walked down the hall to a different room with two other practitioners, where Wayne had to take in short breaths, long breaths, and then blow out as long as he possibly could. They measured his lung capacity and strength, so they would have a baseline for the future.

Next, two speech therapists came in. They checked on the resistance Wayne had in his mouth by having him press his tongue against the inside of his mouth while one of them pressed on his cheek from the outside. They gave him water to drink while they watched, and then he had to eat progressively harder foods, starting with applesauce, followed by canned peaches and pineapples, and then a cracker. Wayne was thankful for these “old man snacks”, as he termed them, because by that point it was past lunchtime, and we were getting hungry.

The whole time this was happening, we could hear cheerful conversation happening out in the hall. Every now and then, someone popped their head in our room, either the doctor, or the paperwork guy, or someone else, just checking on us, always kind, always helpful. It is such an unusual environment. We felt like we had landed in the middle of something beautiful that exists outside of us, but which we have been invited into.

For our next appointment of the day, the physical therapist wheeled his desk into our room. He and Wayne took a walk down the hall to measure how far Wayne could go in a certain amount of time, tested his grip strength, and asked another slew of questions about basic functionality. One question we asked was about eating utensils, as Wayne has struggled to grip them properly, occasionally dropping them, and sometimes feeling like a fork or a spoon is too heavy to even lift to his mouth. We had seen recommendations for weighted utensils, but that was baffling (and kind of funny) to us, since even regular utensils feel heavy to him, and the therapist confirmed that they are not what he needs. “You don’t want to wear yourself out unnecessarily,” he said. But there are foam attachments for utensils that increase the size of the grip, and could help with that, as well as special straps that would basically attach the utensil to his hand. He ordered both of those things to be shipped to our house, free of charge, along with a tool that helps facilitate buttoning clothing. That has been one thing that Wayne has needed help with; he had to ask each of the teenage boys on the hiking trip to help him button up, and he loved making them guess whether he was pulling their legs or not. Making people feel awkward is his favorite.

One last practitioner came to the room before we left: a nutritionist. She went over Wayne’s current diet, but mostly encouraged him to keep on weight and eat protein with every meal. She said that the VA pharmacy could provide protein powder and Ensure shakes, if we thought those would help, also free of charge, and also shipped straight to our house. She gave us a handout with suggestions for how to boost caloric intake in each meal, like adding butter and other fats. Wayne wasn’t sad about that. He thinks that adding some extra beer to his diet would also be a good way to take in more calories. 😂

We wrapped up the final appointment and headed downstairs. My overarching feeling was difficult to describe. I told Wayne that this environment is full of something amazing; I almost wanted to say love, but I wasn’t sure that was just the right word. Perhaps care? Wayne suggested sincerity. These people are kind and attentive, focused on giving all they can. When the ALS nurse first called us to make Wayne’s initial appointment over six weeks ago, she said, “If this indeed the path that you are on, we will take care of you.” At the time, it seemed like empty words, but Wayne told her on clinic day, “You weren’t lying.”

We left the hospital, sobered by the reality of all the adaptive equipment that we wish he didn’t need, the decisions about clinical trials and medications we really don’t want, and a disease that is obviously and visibly progressing down a road we don’t want to travel. But we also left knowing we have a huge team of people who care deeply and serve generously, that we are welcomed and seen, and that they are with us for the long haul. We are fighting hard, and so are they. We are so very, very grateful.