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  2. Getting Diagnosed with ALS

Just Diagnosed with ALS? We Are with You


ALS. It’s the club you never thought you’d be a part of, and we’re sorry you’re here — but so glad you found us because we are here to help. In the next few days, weeks and months, you and those around you will run through every emotion. What you’ll 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 a community of people and resources waiting to help you.

This community — the I AM ALS community — is now your community. One that will be there for you every step of the way. We are with you. We are you. Now and always. This is what I AM ALS is all about. We’re glad you found us.

The first things to do from those who’ve walked in your shoes

Find your person. Hearing that you have ALS can be confusing, shocking and scary. Find your partner, best friend, parent, adult child or whomever you love and trust to not go into panic mode, and share your diagnosis with them. This is the first step to ensuring ALS will not be an isolating experience. 

Take. It. Slowly. We get it — you want to dive in and read everything about ALS immediately, but that may result in you feeling overwhelmed and even finding untrustworthy information. Take a deep breath and then a few more. This is key to calming your mind so you can observe and process how you’re feeling, and begin to prepare for action. Give yourself the mental space to just be. Our upcoming effort is a marathon, not a sprint. 

Get a second opinion. Why? Well, there is always the chance that the first diagnosis was wrong. As you’ve already learned, ALS is diagnosed by exclusion, that means eliminating every other possible cause of your symptoms before being told you have ALS. Even if the diagnosis isn’t wrong, you should explore multiple doctors if you can to find the one who understands you and how you want to live with ALS. Find someone who is an ALS specialist and locate the closest ALS clinic

Build your team. It could be one person, or it could be ten. Shortly after diagnosis there is a period of disbelief where you may not want to communicate with others because you don’t want to talk about the diagnosis again. A period where you’ll hold back from asking others to help. Once you get past this and start asking, you’ll find that everyone wants to help — they just don’t know how. So ask someone to take control of scheduling appointments for you. Ask another to start learning about the top ALS doctors. Ask another to get information about treatments and clinical trials. And ask another to make sure you still have fun, each and every day. Remember: Asking for help is a superpower, not a weakness. You do not and should not have to go through this experience alone.

Start educating yourself and your team. Now that you have your team, it’s time to start learning about the disease from reliable sources (such as the ones we’ve cultivated for you on this website). In particular, start learning the basics about ALS: what causes it and what are the common misconceptions. Next, dig into clinical trials. While there are currently no cures for ALS, there are numerous clinical trials testing potentially promising treatments. 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 is in your hands. Never forget that.

Plan your finances. Managing ALS can be costly. Understanding and applying for disability benefits (or VA benefits, if applicable) is essential when preparing for your future care needs. The application process can take a few months, so the sooner you apply the better. Speak with a financial planner and/or seek legal advice about advanced directives to help ensure your loved ones and health care teams are aware of your values and can honor them. These discussions are not easy, but making a plan early on will allow you to respond more effectively when the time comes. Check out these tips on planning for the future.

Remember to live, love and laugh. The road ahead may be filled with uncertainty, but it’s important to keep moving forward in the pursuit of your happiness. What gives you joy? What have you always wanted to do or learn but haven’t prioritized? Think about what you value, and let that guide how you live your life — on your terms. 

Navigating the uncertainties of ALS and taking care of yourself can feel challenging and overwhelming. Finally, always remember: when you don’t feel like loving and laughing, we are here for you. Connect with an I AM ALS Navigator today and get personalized support through every step of ALS.  Request assistance online at any time or call us at 866-942-6257 9am-5pm CST Monday to Friday. We’re sorry you’re here with us, but so proud to call you a friend. Here’s to staying strong, staying together and to finally ending this disease. We’ve got this.

Words from those who have walked in your shoes

To help with the litany of emotions you’ll experience in the days and weeks ahead, we asked 10 fellow patients and caregivers to share the advice they would give themselves or their loved ones if they could go back to those first days after diagnosis.

1/10

You are not alone. We’ve got your back every step of the way

Connect with an I AM ALS Navigator today

Have questions? Call us at 866.942.6257 between 9 a.m. - 5 p.m. or email us

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