I was diagnosed in August of 1998. So, I have been doing this for awhile. I have recently started a blog to share my perspective and what I have learned over the years of living with ALS. Being able to have fun, laugh, and enjoy yourself is the most important thing in life.
Here's one of my recent posts:
When I was a kid, whenever I visited my grandparents, to keep us occupied during church, my grandmother would give my sister and me a piece of gum. But, only one half of a stick of gum. Even for a kid, that’s not much. That’s plenty, she would say.
I have found there are a lot of things, like that half stick of gum, that I was used to having which, I have realized, I can get by without. I found out, with ALS, that it’s amazing how much muscle you can lose, and still live a somewhat normal life. I was walking around, doing everything I always did for years with a great deal of muscle loss. I got by with much less than I thought I needed.
I had one of the original big bulky bag cell phones, back in the day. I had it mainly to use in case there were an emergency, like if my car quit, because I drove 40 minutes to and from work every day. So, after I had to quit working due to my health issues, I just never got another phone. I went for years without having or using one. Which means I had also never texted, other than from a computer. And, I lived to tell the story! I found I could survive without one. I finally got a new cell phone last year, after 15+ years without one.
I could never have imagined sitting in one spot and not moving for an hour or even two hours before ALS. Sure, we all say, “I wish I could just sit and do nothing!” What we really mean is we wish we didn’t have to go to work, or do any of our daily chores, but moving about would still be an option. What about when moving isn’t an option? I’ve found it really is possible to sit and literally not move, without going totally crazy. Even a couple of years ago, I was used to asking one of my daughters for help moving my leg or arm after an hour of not moving. But, when that was no longer an option, I found I could survive moving less often than I had thought.
I used to always be on the go. Now, leaving the house numerous times every day is just a distant memory. I could never have imagined staying in for days, let alone weeks at a time without leaving the house. Now that seems totally normal, and rarely bothers me at all. It helps that most of those periods of time occur during the winter, when just the thought of the cold Indiana weather is enough to make my body ache, and all I want to do is stay in and stay warm. I have experienced cabin fever first hand, but I’ve also learned that you really don’t need to leave the house every day, every week, or even every month to be content.
We all find ourselves thinking about the things we think we need. The latest model TV, or newly released IPhone or IPad. Whatever it is, it may be something we want, but usually we can definitely do just fine without it. I’m glad I learned early on, that you don’t always need as much of something as you think you do to be happy. Sometimes half a stick of gum really is plenty.
Additional posts for Amie's blog can be found here: Amie's Blog