Recommended Steps after Diagnosis

•  If you suspect you have ALS but are not diagnosed yet, look into the possibility of getting additional term life insurance and/or long term disability insurance.

•  ALS is difficult to diagnose. If you were not diagnosed by a neurologist who specializes in neuromuscular diseases, request a referral to one for a confirmation of the diagnosis.

• Recognize that ALS is bigger than any one person or family. You will need help. There are agencies and organizations out there whose specific purpose is to help. Find them and take advantage of what they can offer.

• Register with your local ALSA Chapter. Request information about services and publications available.

• Register with the National ALS Association (800-782-4747). Request an ALS Patient and Caregiver Resource Manual and information about available services and publications.

• Register with your local ALSA Certified Center or ALS Clinic. Request information about services and publications available and sign up to receive the monthly ALS Support newsletter. 

• Contact your medical insurance provider and request that you be assigned a case manager to be your primary point of contact.

• Contact an attorney who specializes in elder care law and make an appointment to discuss legal and financial planning recommendations.

• If you served in the military, contact the Department of Veteran Affairs (800-827-1000) about eligibility for health, vocational rehabilitation and disability programs and services.

• If you are employed, contact your state Vocational Rehabilitation Division and request information about available services.

• If you don't have a computer and internet access, consider getting one.  There is a wealth of information and support available on the internet.

• If you can, participate. Research ALS on the internet, attend an ALS support group meeting, join The ALS Association, go to advocacy day, write your congressional delegates… Be active. Do what you can. Do not expect others to do it for you. Being active, involved and participating is the best medicine you have.

• When the time comes, use the cane, walker, and wheelchair to conserve energy and protect your body. The last thing you need is a broken leg, arm or head.

And finally, be careful with alternative treatments that claim to slow down, stop or cure ALS. If the claims were true, they would be front-page news. Unfortunately, there are many individuals offering treatments designed to take your money rather than to cure ALS.