ALS & The First Year Review

View of Cold Mountain

   A little more than a year ago I was diagnosed with ALS at the age of 27. I was told that I was abnormally young for developing this particular disease, but I wasn't the youngest to be diagnosed either. I was also told that I could expect to live for about 3 more years. Being that it has already been more than a year, my life expectancy after diagnoses is already a third of the way threw.
   This morning my wife gave me a kiss at 5:30 a.m. and then left for work. I rolled over and went back to sleep. I later rose to the racket of the morning calls of the birds coming from outside our window. After a few quick leg stretches I put on my cloths and leg braces. I then grabbed my cane and headed to the bathroom. After that I wondered into the kitchen to make myself a juice and oatmeal breakfast. I then gathered all of my morning vitamins and headed for the dining room. First a trip with a juice then a second trip with the oatmeal. After breakfast I sat down to write this blog. Of course the internet wasn't working properly because I had unplugged the wireless box yesterday while I was cleaning the house with my mother in law. So I spent the next 45 minutes struggling with that issue.
   I am now sitting here by myself breathing normally, seeing normally, hearing normally, tasting normally, feeling normally, and I can still wiggle all of my toes and of course all of my fingers as well. I am still walking around these days, I just move a lot slower and I don't have good balance. All-in-all I feel alright.
   The first year of facing a new life with ALS presented many challenges. The hardest thing that I have faced so far was telling people that I had ALS. Sure every day is a mental and physical challenge but nothing has compared to breaking the news to my family and friends.

Picnic at Horseshoe Rock

  Staying motivated is difficult as well but it may just save your life. You do get frustrated when every thing that you do takes a tremendous amount of effort. I never imagined that turning on a lamp would be difficult or rolling over in bed, but it is. And don't even get me started on opening a new peanut butter jar. These problems seem all the more worse when you see someone else do them with ease. Just a few years ago I could carry a 45 pound kayak up 3 1/2 miles of trail then turn around a run 3 1/2 miles of class V whitewater. Now I don't even attempt to carry in a bag of groceries from the car.
  If you happen to be one of the lucky people in this world who still has a fully functioning body don't waste it. I now know just how special it is to have a working body. Getting by in life just isn't good enough. Going to work, taking care of the lawn and house. If this is all your doing with your life you may just be wasting it. If I could I would go as hard as I could every day that I could. I would be out boating, biking, hiking, climbing, or just going on picnics. One day your body isn't going to be able to do what you want it to do anymore. So take care of it as best you can and enjoy it while it last. Eat healthy food, stop drinking so much, and get out into the world and do some living.

Natalie and I on Horseshoe Rock

   I look back over the last year of life and think about all I have done to improve my chances of sticking around for just a little bit longer. I have spent a lot of effort trying to detox my body with my naturalpathic doctor. I have collected equipment for a home gym and used it as much as possible. I have worked with my naturalpathic doctor on taking beneficial vitamin's. I have worked hard on creating a healthy home and living environment. We had a great fundraiser and had the house worked on. I have also spent a lot of time with my family but less time with my rowdy friends. The only regret I have is that I wish I had found a way to take better care of my knees. The first sign of knee trouble I should have gotten some AFO's that I liked and proper knee braces. I now have these things but my knees are already pretty shot.
   This year has been good to me though. I have done a lot of hiking with my friends and family. I have spent a lot of quality time with my wife. Instead of chasing a career at a 100 m.p.h. like a used to, I now have time to enjoy working in the garden, visiting relatives and just enjoying life.
   I am however finally disappointed to announce that I can no longer hike. I have the energy to do so and the will power, I just lack the ability to walk down hill without pain. Perhaps if I only had to walk uphill I could continue on, but that just isn't possible. So I am announcing that I am putting off hiking all of the trails in the Smokies. Perhaps one day I will be able to continue on. We did make it a long ways though 393.2 mi. Thats like hiking from my house in WNC to Wilmington, NC then turing around and walking back to Whiteville, NC. Except all of it done on steep rocky trails through creeks, snow, trees and most of the time done with a backpack on. So you can still get a lot done when you have ALS. The first year anyway.

Playing with the Camera at Family Reunion last weekend

  Now that I can no longer hike I have decided to do more camping, picnicking and save up some money for a handicapped bike. You don't have knee and feet problems when your on a bike so that is my next planned outdoor activity.
   Living with ALS is difficult but you have to find a way to keep living and make the best of it. I think I have been doing a good job of doing just that. And I plan on continuing that trend on into year number two.