Being diagnosed with ALS can seem overwhelming. It is completely natural to feel shocked, scared, sad, angry, and a long list of other emotions.
Along with those emotions, you must take steps to deal with the diagnosis and begin living life with ALS. But what should you do, and where should you start?
Second Opinions
If you haven’t already done so, it’s always a good idea to get a second opinion when dealing with a serious diagnosis like ALS. ALS is not an easy disease to diagnose, and it’s been estimated that as many as 15% of ALS cases are misdiagnosed.
Because ALS is a rather rare disease, many doctors have no experience diagnosing ALS. When getting a second opinion, try to find a specialist who has experience working with ALS patients. Some clinics focus exclusively on serving ALS patients; you can click here to find the Texas ALS clinic or center closest to you.
Getting Educated
Knowledge is power. The more you can learn about ALS—from its history to its vocabulary and current research—the better you’ll be able to make decisions regarding care, therapy, and planning.
You can find many resources here on this site. For help in learning how to navigate the system and get the healthcare you need, we also provide Care Services Managers throughout the state.
Coping Emotionally
Joining a support group can help you deal with the emotional struggles that come with an ALS diagnosis. It also allows you to connect with and get advice from other people who have ALS, and who may have more experience with the disease.
Though ALS currently has no cure, that doesn’t mean that there is no hope. In at least a few cases, people with ALS live for decades after their diagnosis. Some such patients find that the disease eventually stabilizes; though the symptoms they’ve experienced remain, no new symptoms develop. Regardless of how quickly the disease progresses, you still have much to live for and can make the most of the time you have.
Sharing Your Diagnosis
Telling a loved one that you have ALS is often a difficult conversation. For advice on how to share your diagnosis with others, click here.
Planning Ahead
ALS is a progressive disease, so it is best to stay ahead of it: the longer you wait to do something, the harder it will be to do it. That may mean getting equipment (like wheelchairs or ventilators) before it is really needed. It also means planning out who will provide care for you, and setting up an advance directive that spells out your wishes in case you lose the ability to communicate them. For more advice on how to plan ahead, click here.
Getting Help
At the ALS Association of Texas, we’re here to help in any way that we can. If you’re a Texan with ALS or you care for one, let us know how to get in touch with you so we can connect you with the local resources you need.