Learning you have ALS is shocking, life-changing news. It is important to give yourself time to absorb and process your diagnosis. You do not need to read everything about ALS right away, and you can wait to tell others until you feel ready. There is no way to know how your ALS will progress. We suggest taking things one day—and one step—at a time.
Finding Support
|
You do not have to do everything yourself, or figure everything out on your own. ALS professionals and organizations can help guide and support you. If you’re not ready for outside support right now, just know that there are resources available when you need them.
|
|
Here are some ways you can develop a strong support network:
- Attend an ALS clinic. This team of professionals will monitor your health, make recommendations, and guide you every step of the way. Studies have shown that attending an ALS clinic once every few months can improve your quality of life and help you live longer. Find a clinic.
- Connect with a local ALS organization. Experienced, caring professionals can answer your questions, connect you to resources, loan you equipment, and much more—all at no cost. Find a local ALS organization.
- Join an ALS support group. Support groups can provide a place to connect with and learn from others facing similar challenges. There are in-person and virtual support groups for people living with ALS, caregivers, family, and friends. Find a support group.
- Develop a local support network. It can be hard to ask for help, especially when you’re used to being independent, but accepting help when you need it can be very helpful for both you and your caregiver. Family, friends, and the larger community often want to help if they know what you need. Learn how to coordinate and ask for help.
Addressing Anxiety
|
When you are diagnosed with ALS, it is normal to worry about what will happen to your body, your family, your finances, and other aspects of your life.
However, if you begin experiencing symptoms such as heart palpitations, shortness of breath, or uncontrollable worrying thoughts that disrupt your sleep, well-being, or ability to think clearly, it is important to discuss these symptoms with your ALS care provider. These may be symptoms of anxiety, and severe anxiety can have a significant impact on your quality of life. |
|
|
If you think you could use some help or guidance, start by reaching out to your ALS neurologist and ALS clinic team. Contact your clinic coordinator between visits or talk with your social worker and neurologist during your visit.
You may also want to ask to meet with a mental health professional like a counselor, psychologist, or psychiatrist to talk about strategies for reducing your symptoms. Your ALS clinic or local ALS organization may be able to recommend a mental health professional in your area who has experience working with people living with a disability or chronic or terminal illness. Your neurologist or mental health professional might suggest taking medication for anxiety. Many people diagnosed with ALS have found that medication has helped them sleep better and feel more like themselves again. Accepting this help can improve your quality of life during this difficult time. If you decide to take medication, do so under the guidance of your ALS neurologist or mental health professional. It may take some adjusting to find the right medication and dosage. To learn more about anxiety, depression, counseling, and overall well-being, visit our ALS Mental Health page. |
|
“ALS is overwhelming for all of us. If you're crippled by anxiety or depression, don't be afraid to seek professional help, and don't wait to get help! I know mental health has a stigma. As a former NFL player, I used to scoff at the thought of my own mental health problems. Like everyone else who thinks seeking help is a weakness, I was wrong. It actually takes strength to seek help because of the stigma.”
— Tim Green, former NFL player living with ALS
— Tim Green, former NFL player living with ALS
Adjusting to Your New RealityIt’s common to feel overwhelmed with sadness, fear, and grief over how ALS will affect your life. It is also common to feel frustrated and angry that you may lose or have already lost the ability to do certain activities.
However, ALS does not need to define you or consume your every thought. Once you begin to accept the diagnosis, the question can become: How will I choose to live with it? Your attitude toward living with ALS will play a very important role in your quality of life. |
|
