ALS is not a war, it's a roller coaster.

I often read about PALS fighting the battle and being told not to give up. Every time I read that, I feel a little confused, and now I understand why. That view assumes a war. And wars can be won or lost. Too often, people dealing with ALS think they're in a war that they're bound to lose. But that's not how ALS works. Normally, life in middle age is a fairly comfortable ride, with no idea how long it will last or how the end will come, so we ignore that. But life with ALS is more like an emotional roller coaster with obstacles thrown in our way. And there is some utility in knowing roughly how long the ride will last, and we can prepare for the manner in which it's going to end. My PALS and I were never involved in a war against ALS or a battle for life. Instead, we realized we were on an unlucky roller coaster that we hadn't signed up for. This new, unfortunate ride led to a quicker but fairly predictable end of life, and required some modifications for eating, drinking, communicating, and perambulating. So we approached our new life matter-of-factly. We knew that the ride would end soon, and we planned for that, to make the experience as palatable as possible. The thing that made all the difference was our attitude. We didn't fight against ALS, really--you can't win this fight. Instead, we adjusted to the roller coaster as needed, and, as before ALS, we continued to enjoy each day as it came. Although there were some sad or scary moments along our ALS journey, we were pretty much in control of our day-to-day living, and that sure did feel better than being sad and scared all the time. Life with ALS is still somewhat like any other life, except you know what the end looks like and you have a rough idea how long it will last. What you do with that knowledge can make a big difference in the quality of your days remaining. --Mike

Comments

brandi67's picture

This is just the attitude shift I needed.

I want to focus on the present moment and I realize that that is where I need to be emotionally as a CALS to allow my PALS to be the best he can be---and not bring him down with my fears and frustrations!

The roller coaster is the perfect analogy for this crazy ride we are on---we were diagnosed in April 2015. Since diagnosis everything so far has been--this might be our last walk on the beach, our last time to swim together in the lake, when was the last walk we could hold hands and most recently I fell apart because my PALS was no longer able to lift the little one up to put the topper on the Christmas tree.
Last Christmas we didn't know why he was having trouble walking--ignorance was bliss!
You are right it is a roller coaster and a truly frightening ride but better we have the time together than to have lost him without getting to say I Love You a million more times:)

SenoraG's picture

Thank you for sharing!! I sit and think about it daily how we live with this diagnosis. My husband was diagnosed last month. I was sad for about a week..trying to deal with it. I think its a natural reaction to want to put up a fight. But with everything you read about ALS, it is so final. There are no survivors...its terminal....life expectancy after diagnosis...Thats hard to deal with.

So, everyday, we do are best to live in the moment and let the idea of whats coming not ruin the time we have. Yes its true...we arent going to win this battle. But we can fight to love each other and see the good in every day that we have left. So that in the end, there are no regrets and no words left unsaid.

SLAUGHTER1555's picture

Mike i like what you said and it makes perfect sense i m working on getting to that point of living life matter of factly but man its hard to watch your PALS talk and walk change to watch there body literally change before your eyes. To see him so helpless it so gut wrenching!!! But i suck it up for him :) I would love to do so many things but the other worse part of this disease is the finance! ugh! Not only has our lives changed but our lively hood has been depleted! I had to stop working he only has disability income all the things i desire to do for him to continue living life its kind of hard when you cant get around and you have no money to do so. If we could just get a vehicle to get him around safely not having money wouldn't seem so bad. Im praying to get to that point your talking about with the help of God. Thanks for the encouragement

Atsugi's picture

[quote=SLAUGHTER1555;bt2124]Mike i like what you said and it makes perfect sense i m working on getting to that point of living life matter of factly ...Thanks for the encouragement[/quote]

Slaughter, I wish you luck. Speaking of transportation, have you called your county or city transportation department to see if they offer disabled transport?

chally's picture

Hey mike, good post, I am now after almost a year just finding out about blogs,don't know how they work but saw this and liked it. My wife is a modern dancer and when we got diagnosed doc said we're gonna fight this she said no we're not we're gonna dance with it! And so we have been! Taken it all one day at a time! Thanks mike love ya chally

Dgmiller22's picture

Hello Mike, thanks for your posts. I'm a single, 72 year old woman diagnosed with PLS and symptoms beginning in 2010. I'm still able to walk with a walker and still living alone. I can relate to what you said about accepting the inevitable outcome. I still cry occasionally but only because I have to leave my loved ones behind. I have gone to three different neurologists and none seemed really interested in helping. I finally came to realize there was nothing they could do. I get massage therapy occasionally and it seems to help. I'm so glad I found this forum and it helps me to feel I'm not so alone in this. I have two wonderful children and they are so supportive. Dreading the part of this trip that puts more of the responsibility on them. Thanks again for your comments.

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