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Just Diagnosed With ALS? We Are With You.

In the next few days, weeks, and months you and those around you will run through every emotion. What you will read on this page cannot prepare you for every twist and turn. It can, however, remind you that you are not alone and that there is an army of people and resources waiting to help you.

Let’s Start With Something Really Important: You Are The Same Person Today As You Were Yesterday And Will Be the Same Person Tomorrow

How do we know? We’ve been there. We’ve felt that shock, that disorientation, and we are still standing. Not just standing, but leading the fight for a cure. Because we believe that if we do, it is not a question of if but when a cure will be found.

This community--the I AM ALS community--is now your community. One that will be there for you along every step of this fight. We are with you. We are you. Now. And always. This is what I AM ALS is all about. We are glad you found us.

Words From Those Who Have Walked In Your Shoes

To help with the litany of emotions you will experience in the days and weeks ahead, we asked 40 fellow patients and caregivers to share the advice they would give themself or their loved one if they could go back to those first days after diagnosis.

Here is what they said

  • We will fight together as a family. We won't stop.

  • We cannot change the cards we are dealt, just how we play them.

  • You are not a statistic. You are living with this, not dying of this. Your positive outlook has the potential to heal or help you from declining rapidly.

  • Never give up, you need to do whatever it takes to fight; and if you lose, at least you have done it with a fight and inspired us all.

  • Give in to the shock. The sooner you do the sooner you can focus. Don’t rush to tell others. Let the first round of grief be just you and your loved ones.

  • We have an opportunity to focus on the things that make us happy so let's attack those with passion. What is the next thing in front of us to improve quality of life--Let's do that. Let's help others battling this disease.

  • Let's keep living and having fun. Spend more time with each other and in your happy place. Your family will do anything you need - don't ever be too embarrassed to ask.

  • Create a team of family and friends around you and have someone on that team begin researching treatments, research, clinical trials.

  • Stay away from message boards on the Internet, because most of those people are quite advanced with the disease, and their stories and attitude will scare you. There's time enough to do that later.

  • Don't spend time in grief over what you might not have (old age, retirement with wife, etc.), and rob yourself of time you do have today.

  • It's okay to be angry about the diagnosis but don't be depressed because then the disease wins twice: it takes your life and ruins what time you have left.

  • Don’t shut yourself in.

  • Don't panic or try to process too much information too quickly. Allow plenty of time to digest the diagnosis and what it means to you.

  • Don’t announce it to social media. You will be overwhelmed by responses.

  • Don’t change anything about the way you were living.

  • Don't be angry at your friends who don't "get it" right away. Some will get it in time; others never will, but at the beginning it's hard from them to process.

  • Don’t get depressed, you have to be a fighter from the start.

  • Go out to dinner. And laugh.

  • Be positive and hopeful.

  • You are not alone.

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The First Things To Do From Those Who Have Walked In Your Shoes

Take. It. Slowly.  Our first instinct after diagnosis is to dive in. To try to find everything right away. Try to undo the shock.  If you do that with ALS, you will be overwhelmed. Your upcoming fight is a marathon, not a sprint. And it’s a marathon many have run before you. At the start give yourself the mental space to just be. When you are able to make it through a day without randomly bursting into tears, then you are ready to move on to the second Thing To Do.

Build a team around you. It could be one person, it could be ten. Shortly after diagnosis there is a period of disbelief where you won’t want to talk with others because you don’t want to talk about the diagnosis again. A period where you will hold back from asking others to help. Once we got over this and started asking, we found that everyone wanted to help. They just didn’t know how to. So ask someone to take control of scheduling appointments for you. Another to start learning about the top ALS doctors. Another to start learning about treatments and clinical trials. And another to make sure you still have fun, each and every day.

Start educating yourself and your team.  Now that you have your team, it’s time to start educating yourself and your team on the disease from reliable sources (such as the ones we have cultivated for you on this website). In particular, start learning the basics about clinical trials. When you get to your three month appointment this will be something your doctor(s) want to talk about. So go prepared. Know what the difference is between a Phase I and Phase III trial. Know which ones you want to hear more about. And know that each visit to your doctor is your chance to ask questions. Your chance to learn and empower yourself. It doesn’t feel like it right now, but how you move forward in your hands. Never forget that.

Get a second opinion.  Why? Well, there is always the chance that the first diagnosis was wrong. As you have already learned, ALS is diagnosed by exclusion. But even if it isn’t wrong, you owe it to yourself and your family to explore multiple doctors if you can. To find the one who understands you and how you want to fight this fight. If we take the time to look at multiple houses or cars before settling on the right one, we should definitely be doing the same with something this important.

Remember, you are going to be with us for a long time. Take time to live, love and laugh. Reading this probably makes your head spin right now, but it is true. As one doctor said to a caregiver, “I’m sorry to tell you, you are stuck with the SOB for a long time still so remember to live, love, and laugh.”

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