Amanda Kehrberg

Submitted photo

Have you ever dumped a bucket of ice water over your head? The sudden freeze is a shock to the system, causing shivers and shrieks.

When the Ice Bucket Challenge went viral in summer 2014, everyone from movie stars to politicians to CEOs stepped up to raise awareness for ALS — amyotrophic lateral sclerosis — also known as Lou Gehrig’s disease. 

But the ice bucket was never just a playful dare: It was a meaningful metaphor for the overwhelming shock of an ALS diagnosis. It’s a moment you can’t prepare for, with consequences that will shape the rest of your life.

There’s no easy way to cope with such painful news, but there are steps that can help.

Take time to grieve, but choose hope

There’s no one path to an ALS diagnosis; some take days or weeks, while others face uncertainty for years. But even if you’ve longed for answers to explain your symptoms, an ALS diagnosis is devastating. 

Allow yourself to grieve. The future you’ve imagined will look different now, and that can be heartbreaking to accept. When you share your diagnosis with loved ones, they’ll also share your grief. Lean into the hugs and the tears and take the time you need to process.

Then, choose hope. The good news is that there is more support now for ALS patients than ever before and more opportunities to define your own path. Thanks to continuing research and innovation, we know more about how ALS progresses and how to help patients live and thrive longer. 

Connect with professionals

Start by finding your clinic. Here in Arizona, we’re lucky to have several renowned ALS clinics — from the Barrow Neurological Institute to the Mayo Clinic to the Phoenix VA for veterans — offering holistic care for patients. In clinic visits, you’ll meet with specialists in physical and occupational therapy, respiratory care, nutrition and more. You’ll build a care plan that focuses on your specific needs and goals. 

What does a life with ALS look like for you? There are many unknown obstacles on the road ahead, but with expert help you can be ready to respond proactively. 

Build your support system

Your clinic care team is just the beginning of your support system: It’s time to find the other superheroes who will help you access both the tools you need and the inspiration and joy you deserve. 

Local organizations like ALS Arizona provide free programs and services to ALS patients and their families. That includes everything from education to equipment to experiences: Who says someone with ALS can’t go horseback riding or water skiing?

With free caregiver skills training, your loved ones can learn how to help you when you need it. With the equipment loan closet, you can access devices to help keep you active, mobile and comfortable. And with a knowledgeable and caring staff who are eager to help, you’ll always have someone to call.

You’ll also find support groups that will connect you with other ALS patients in your community who know what you’re going through, and that understanding is invaluable.

An ALS diagnosis can feel like an ice bucket: It’s alarming and painful, and at first you might just want to scream. But after that initial shock, we turn to the shining sun and the embrace of a big, fuzzy towel. Seek out support and you’ll find warmth waiting for you, too.

Editor’s note: Ph.D. student Amanda Kehrberg is a volunteer with Phoenix-based ALS Arizona. Please send your comments to AzOpinions@iniusa.org. We are committed to publishing a wide variety of reader opinions, as long as they meet our Civility Guidelines.