Down the Line

Amanda and I went to Baltimore this week. It was an overnight stay to make the morning appointment and journey home slightly less tiring than going up and back in a single day.

The journey is still fairly exhausting. Two days after we got back, I'm still tired and my legs feel particularly tight.

I recently blogged about submitting my order for a piece of hardware that will help me to communicate.

Given that finances also arose in the same post, the topic of medical costs -- hardware, supplies, procedures, care...etc -- was fresh in our minds during Thursday's appointment.

We finished the drug trial portion of our visit and were joined by Lora Clawson. There are many people that have pivotal roles at JHOC in the Neurology Department, but I think there are few as instrumental as Lora.

Amanda and I have always tried to stay a step or two ahead of ALS, and conversations at JHOC often inform our decisions.

We talked with Lora about the medical procedures that are possibly in my future. The first thing we discussed was the need for a feeding tube, should I suddenly lose a large percentage of my body weight. Apparently, most PALS choose to go ahead and get a feeding tube.

The hardest decision I'll face looks certain to be about a breathing tube. The tube is inserted once the patient has undergone a tracheotomy, where it remains. The hardest part is the ongoing care that's required; someone must be within arms reach 24hrs a day. It basically becomes a team effort, as no one person can work around the clock. Lora estimated that the additional cost of medical assistance totals $500,000 per year.

In stark terms, I will require support that will either push my family support network beyond its physical and mental limits, or will push them beyond their financial limits.

I think that could be the definition of a lose/lose situation.

Still, our conversation with Lora wasn't finished. Since our conversation had taken us so far down the road my journey would go, there seemed little point in avoiding the end.

It's at the end that ALS, in the words of Lora, is merciful. I will have a harder and harder time breathing until the CO2 levels in my blood rise to the point that it will put me to sleep, and that will be that.

That's all a fair distance down the line, but -- as we try to prepare for what's ahead -- it provides plenty of food for thought.