Quite the Summer

Its been quite the summer for me, one of the best, if not the best of my life. I have been lucky to have been a part of some amazing events. It started with the Guilford Crossfit competition, then we had the Rad and Gnar Vision Quest, Cornhole for Kyle at Assumption College, the Carousel Night at Lenny and Joe's, Coastal Connecticut magazine had a night honoring us at the Madison Beach Hotel, and just the other night I got a chance to be a part of a great night in Madison with the BeachComber night. In between there have been trips, concerts, parties, and even a fun tv appearance! I have been fortunate to share moments with Em and Bryce that I hope they will be able to remember later in life.

Unfortunately, despite all this awesomeness, ALS just keeps its onward march. It really never gives up. I am often asked how I am feeling and, to be honest, its not the easiest question to answer. Do I compare how I am feeling to the previous day? Or before my diagnosis? During the time I got to spend with Ann Nyberg, she suggested that it might be a good idea to describe my symptoms at diagnosis and what I am currently going through. My hope is to provide a window into the battle that I am fighting.

The very first symptoms that I had where muscle fasiculations in my upper arms, shoulders, and chest. At the time I was still exercising pretty much every day, and chaulked it up to having a good work out. The next symptom that I noticed was hand weakness, or trouble gripping heavier things. I occasionally would struggle picking up our cast iron pan, but I would credit that to it being pretty heavy. There was this time last summer, where I noticed a nail was popping up a bit from our back deck. I grabbed a hammer to drive it back down, and struggled just to swing the hammer a couple of times to drive the nail. I didn't have a convenient excuse for that struggle, the hammer is not particularly heavy, nor was I working out prior to swinging the hammer. I had also experienced what could best be described at foot drop, though at the time I figured it was a result of the sciatica that I was dealing with, after all it was the same leg. While I was fine walking, even at a brisk pace, running and jumping became harder as a result.

So where am I now? My speech has become slurred and I am forced to speak much slower now. Not only has my voice changed, but my laugh has as well. I have also started to drool a bit. I'm not sure if ALS cause me to produce more saliva or if I just swallow less, but the times I have caught myself from drooling on me are certainly happening more often. My finger dexterity has significantly decreased. I often struggle to open a bottle of water, or hold a pen, and I am even typing slower. Walking has become increasingly difficult. I can no longer walk at a brisk pace and certainly can't run. Stairs are becoming more of an issue and I find myself totally reliant on using hand rails to keep from tripping up or fall down the stairs. My balance has been significantly hampered. A slight nudge could easily knock me down, and no this is not an invitation to test my balance. Unfortunately, the issues with walking and balance have combined to cause me to have more than my fair share of falls, and a good number of them resulted in me hitting my head. I even had one earlier today. Obviously these are a big concern and there certainly is the possibility that I hit my head so hard that I don't wake up.

PALS will often refer to ALS as a thief, because it slowly and methodically robs you of your abilities. But ALS does not stop with taking just physcial abilities. It has also robbed me of my wife. While Kati and I are still married, ALS has destroyed the dynamics of husband and wife. We are no longer Team Schmoops ready to take on the world, but rather we are two people just trying to get through the day or week. ALS has put a tremendous strain on our marriage, and while I like to believe everything will be ok, I don't honestly know.

FU ALS

https://www.youtube.com/watch?v=VkCg-3nxT8E