First Steps
A new ALS diagnosis can feel overwhelming, and you do not have to navigate it alone. This page shares the most important first steps, what to expect next, and how to connect with our team for support, services, and resources.
I Have ALS - What Do I Do Next?
Hearing the words “You have ALS” can feel overwhelming. You may be experiencing shock, fear, sadness, anger, or even disbelief. All of these reactions are completely normal.
Take a deep breath. You do not need to figure everything out today. Give yourself time to process this news. It is okay to move forward one step at a time. You are not alone, and support is available when you are ready.
1. Reach out to the ALS Society
Connecting with the ALS Society of New Brunswick and Nova Scotia, or your local provincial society if you live elsewhere, is an important first step. Speaking with compassionate and knowledgeable staff can help you understand what support is available and what to expect as needs change over time.
You do not have to navigate this alone.
Emily Wells – Client Services Manager
(902) 454-3636
2. Ask about the ALS Multidisciplinary Clinic
You may wish to ask your healthcare provider for a referral to the ALS Multidisciplinary Clinic nearest you. These clinics bring together specialists who understand ALS and can support your care in a coordinated way.
New Brunswick:
Stan Cassidy Centre for Rehabilitation
800 Priestman Street
Fredericton, NB E3B 0C7
Tel: (506) 452-5225
Fax: (506) 447-4749
Nova Scotia:
Queen Elizabeth II Health Sciences Centre
1799 Robie Street
Halifax, NS B3H 3G1
Tel: 902-473-5565
The clinic may not be the right fit for everyone, but it is an option worth exploring.
3. Enrol with the ALS Society of New Brunswick and Nova Scotia
Enrolling with the ALS Society ensures you have access to resources, information, and ongoing support. The Society can help you understand your diagnosis, explore options, and plan next steps in a way that feels manageable.
You may enrol using the link at the top of this page.
4. Learn at your own pace
Some people want to gather as much information as possible right away. Others prefer to take things slowly. There is no right or wrong way to approach living with ALS. Move at the pace that feels right for you.
Ask questions when you are ready. Take breaks when you need them.
5. Allow space for good days and hard days
Living with ALS brings a range of emotions. There will be good days and difficult days. It is okay to feel anger, sadness, or frustration.
At the same time, many people continue to find meaning and joy in daily life. Moments with family and friends, time in nature, music, art, faith, and simple routines can still hold deep value. Hold space for both the hard moments and the meaningful ones.
6. Do not go through this alone
Support matters. Reach out to family and friends. Consider joining a support group. Explore treatment options with your healthcare team. While there is currently no cure for ALS, there are therapies and supports that can help maintain comfort and function.
Seeking care early and staying informed can help you feel more prepared.
7. Plan ahead when you are ready
Over time, you may need to make decisions about finances, future care, and personal wishes. While these conversations can feel heavy, planning ahead can provide clarity and peace of mind for you and your loved ones.
You do not need to do this all at once.
8. Your caregiver and family are partners
The people who care about you are walking this journey too. They may experience their own feelings of sadness, worry, or uncertainty. Open communication and shared support can strengthen your partnership.
Accepting help at home can allow you to spend more meaningful time together.
9. Focus on what brings you joy
Continue to make space for the things that matter to you. Spend time with loved ones. Take the trip. Sit by the ocean. Enjoy the small comforts of everyday life.
You are still you. And you are not alone on this journey. We are here with you.