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Learning you have ALS is shocking, life-changing news. Give yourself time to absorb and process your diagnosis. You do not need to read everything about ALS right away. And you do not need to tell others until you feel ready. There is no way to know how your ALS will progress. Take things one day—and one step—at a time.
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Finding Support
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You do not have to do everything yourself, or figure everything out on your own. ALS professionals and organizations are there to guide and support you. It’s okay if you’re not ready for outside support right after your diagnosis. Just know that there are resources available when you need them. Your local community can also assist with care and daily logistics.
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Here are five 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 near you.
- Connect with a local ALS organization. Experienced, caring professionals can answer your questions, connect you to resources, loan you equipment, and much more. Find a local ALS organization near you.
- Utilize I AM ALS Resources. This nonprofit, ALS-patient-led organization has a 1-800 number you can call if you have questions or would like to receive emotional support. I AM ALS also has a newly diagnosed email series and mentorship program that can connect you with someone who has been affected by ALS. Learn more.
- Join an ALS support group. Support groups 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 near you.
- Develop a local support network. It can be hard to ask for and accept help, especially when you’re used to being independent. But you and your caregiver will need assistance as time goes on. Family, friends, and the larger community often want to lend a hand. Learn how to coordinate and ask for help.
Addressing Anxiety
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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. |
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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 anti-anxiety medication. 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.
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 anti-anxiety medication. 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.
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“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 |
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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 everyday, routine activities.
ALS does not—and should not—define you or consume your every thought. Once you begin to accept the diagnosis, the question becomes: How will you choose to live with it? Your attitude toward living with ALS will play a very important role in your quality of life. Many people diagnosed with ALS still have purpose, meaning, and joy in their lives. |
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