Belated ALS awareness day post.
I have MND but it doesn’t have me. It’s been 11 years since my diagnosis, and one of the things that I hear so often is, “MND is different for everyone.” Now I understand what people mean, but this is just not true. MND is “the same BUT different”!


I have seen a 30-year-old young dad of two boys transform from having a strong 30-year-old body to a sickly, aging 90-year-old body in just three years. I watched as he aged 20 years in one. While he saw his sons go from ages 2 to 5 and 3 to 6, my experience is slower, but I’ve learned so much from my friend Adam before he left this life.


Most people will die within 27 months of diagnosis. This is an average, so that means 50% die quicker and 50% die slower.


Yes, it’s different in its progression and order, but not in its horrendous impact on our lives.
For all of us, it’s the same in that eventually, we will lose the use of our limbs, be unable to walk or hold anything, and lose our ability to talk, swallow, and breathe.


Yes, it may be different in the order and speed at which we lose these abilities, but it is the same in its relentless, unending vicious assault on our bodies.
The more we believe it’s different for everyone, the less we will share our stories, lessons, what works, and what doesn’t. We will not share trial results or discover new ways to care for each other.
For me, I need you to share your journey—the good, bad, and ugly. I need to learn from you. It’s true I may not need help going to the bathroom yet, but eventually, if this MND has its way, I will. I want to know how you coped with the personal intrusion of a stranger being so up close and personal. You may already be using a PEG to sustain your strength as you can no longer swallow. I want to learn how you transitioned to that. What did you learn in this struggle with the Beast? What is it like going to a restaurant and eating through a tube while others munch on their steak? You may not need a wheelchair yet, but eventually, you will. Maybe I can help you with that. We need each other because we are not alone, and we are the “same but different.”


They say there is no cure; I say there is, but we haven’t found it yet. Seek, and you will find.
In the meantime, my strategy is this: if we haven’t won the war, we can at least win some battles along the way.


This Beast of a disease has a game plan, and we know what it is. We know very well what MND’s plans are. All good coaches study the game plans of the opposing side. It’s no different with MND; we can stay a step ahead of the beast and at least win from day to day, one day or game at a time.
How I stay a step ahead of the impact of MND is by watching and learning from those who are the SAME but DIFFERENT!


When we do eventually bring down the beast, it will be because of those who died in battle before us. They fought the fight, and others will rejoice in the victory.
But this will only happen when we stop saying we are “all different” and begin to say, “we are the SAME but DIFFERENT”!