If one of your parents has just been diagnosed with ALS, you may be wondering…What now? First, please know that your family is not alone on this journey. I AM ALS is here to help you answer these new questions, support your family though this unprecedented stage of your lives, and provide a warm and welcoming community of heroes and friends who will always be at your side.
You may feel a bit lost, and that is totally okay. Give yourself and your family time to process these new emotions, so that you can love and support each other. Everyone processes this new reality at their own pace, so give yourself and your parents the space to communicate their thoughts, feelings, and worries. When you feel that the time is right, you can begin researching how to go about this diagnosis, and how things might change for your family. We are always here to help. I AM ALS offers support groups, personal stories from families who have been in your shoes, and an online resource center with caregiving guides to help you feel prepared. Surround yourself with community – friends, family, or others who understand – so that you don’t have to carry this weight alone. ALS is a life-changing diagnosis, but it does not have to be isolating.
Once you feel ready to begin researching this new reality, know that I AM ALS is here to answer your questions, and connect you with medical professionals. Finding the right medical care and support shouldn’t be an added burden. Synapticure, a personalized virtual care network founded by Brian Wallach, provides immediate access to specialists, clinical trials, and therapy—all from the comfort of your home.
We are all navigating life in different ways with different experiences, so there is no right or wrong way to cope with ALS. This journey will have its challenges, but it will also be filled with moments of love, resilience, and connection. Remember that your parents are strong—they have faced life’s uncertainties before, and their love for you remains unwavering. At the end of the day, they are just grown-up kids, still figuring things out like the rest of us.
Give yourself grace, lean on your support system, and take it one day at a time. There is no perfect way to go through this, only the way that works best for you and your family.