48%

Amanda and I returned from Baltimore yesterday. I had an appointment at the Hopkins ALS clinic on Tuesday.

If you visit here frequently or have dealt with ALS in your life, you'll know that body weight and FVC are the two biggest indicators of disease progression.

My weight has remained steady, since my diagnosis, at approximately 205lbs.

My breathing has declined. In November 2013 my lung capacity was 53%. In February of this year it had dropped to 48%.

My FVC on Tuesday was still 48%. I don't know how it has remained the same, but I'm not complaining.

Time Out

A blog post is long overdue. It's been more than two weeks since my last post.

Three things have kept me from posting:
1. We had a Conway family trip to Washington DC a week ago.
2. I seem to nap throughout the day to recover from number one.
3. The World Cup is on.

I'm genuinely excited to write about the DC trip. But it'll take a few quiet days to pull together. In the meantime, I've been enthralled by this World Cup; diving and feinting seems to have taken a back seat compared to previous World Cups. It's been nice to see glimpses of the beautiful game. Admittedly I haven't seen every game, but it's genuinely been the most exciting event I can remember for some time.

The girls are home now for the summer. We faced difficult decisions about how the girls should spend their summer. We want to keep them engaged and entertained, but that often means activities and camps away from home. Of course, we face a tough challenge in getting the balance right so that we can spend time together as a family.

ALS gives me no guarantee that I'll have another summer with them.

Shit

Our family doesn't live off the grid, but we live just far enough outside of Lexington that we cant connect to the water supply or sewage system.

As with many "out in the county," we're then faced with getting our own water and disposing of our waste water.

Getting water - for those of you reading from overseas - is achieved by drilling a well deep enough to find water flowing at a good rate, and the putting a pump at the bottom to get the water up to the surface. The top of the well, which is about 8" in diameter, is then covered with a tightly secured cap.

Disposing of waste is a bit trickier.

Most households have a main drain line that exits the house buried almost 2 ft underground. The drain line empties into a large underground tank, a septic tank. The waste water slowly drains through pipes near the top of the tank, and slowly drains out of a number of long perforated pipes via gravity. The drain lines slowly seep waste water into the ground where it is soaked up.

We had a problem with our septic system.