ALS Resources

Just Diagnosed? Next Steps

 

1. Discuss your diagnosis with your doctor and your neurologist.

• It is usually best to schedule an appointment to meet with them in person and to be organized for that appointment with your questions.
• Don't try to learn everything overnight.
• Consider a second opinion - discuss with your doctors if this may help and where best to get a second opinion.
• Explore clinical trials that you may be eligible for.
  • Check the ALS Association and Muscular Dystrophy Association websites for active clinical trials.
  • Check http://clinicaltrials.gov
• Discuss exercise and diet with your doctor.

2. Check out patient advocacy organizations such as ALS Association (ALSA) and Muscular Dystrophy Association (MDA). The U.S. Department of Veteran's Affairs offers extensive support for veterans diagnosed with ALS. Contact the Paralyzed Veterans Association to inquire about these VA benefits.

3. Maintain your activities and healthy lifestyle.

4. Consider ALS multidisciplinary care.

5. Ask questions – none are dumb.

6. Don't panic – there is plenty of time and resources to get your questions answered and your care organized.

7. Read about the disease if you want, but be prudent about sources of information. Lean on trusted organizations, such as ALSA.

8. Consider getting involved.

• Support Groups
• Research

9. Who should you tell? You decide who and what you want people to know and what you want to discuss.

10. You are in charge and there is plenty of time and resources to get your care organized.