Preparing to Feel Prepared: 7 Things to Do When You’re Diagnosed with ALSAugust 6, 2020
ALS. It’s the club you never thought you would be a part of, and we are sorry you’re here — but so glad you found us because we are here to help. You will likely experience every emotion there is in the coming weeks and months — know that we are here for you and will be every step of the way. Figuring out where, how and what to start with can feel overwhelming, so we’ve made a list of seven essential elements to get started in navigating ALS.
- Take a deep breath. It may feel your world’s axis has just shifted. 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.
- Find your person. Hearing that you have ALS can be confusing, shocking and scary. Find your partner, best friend, parent 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.
- Get a second opinion. There could be a chance that the first diagnosis was wrong. As you have already learned, ALS is diagnosed by exclusion, which 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. Find someone who is an ALS specialist, someone who understands you and how you want to fight this disease. Find an ALS clinic near you.
- Start educating yourself. It is incredibly important to learn about ALS from reliable sources. Where to begin?
- Start with learning the basics about ALS: what it is, causes and common misconceptions.
- While there are currently no cures for ALS, there are numerous clinical trials testing potentially promising treatments.
- When you get to your ALS clinic appointment, go prepared to address clinical trials with your health care team. 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 a chance to ask questions. Your chance to learn about ALS and empower yourself. It may not feel like it right now, but how you move forward is in your hands. Never forget that.
- Build your tribe. Shortly after diagnosis there is a period of disbelief where you may not want to talk with others because you don’t know how to share this news with family and friends. A period where you’re uncertain about asking others to help. Once you begin to process how you’re feeling, and start sharing your diagnosis with others, you’ll find that many want to help – they just don’t know how. So ask someone to take control of scheduling appointments for you. Another to get information about treatments and clinical trials. And another to create a care coordination account like Rallyhood or CaringBridge. Remember: asking for help is a superpower, not a weakness. You do not and should not have to go through this experience alone.
- 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. Think about what you value, and let that guide how you live your life – on your terms.