NEWLY DIAGNOSED
Being diagnosed with ALS can seem overwhelming. It’s completely natural to feel shocked, scared, sad, angry, and a long list of other emotions. Along with allowing yourself to feel all of those emotions, it’s important to take steps to accept and learn about your diagnosis and begin living life with ALS.
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Here's some great advice from The ALS Association:
DEALING WITH AN ALS DIAGNOSIS When a person is diagnosed with a fatal illness, it’s common for them and their loved ones to experience anticipatory grief. I AM ALS offers thoughts and information to help you and your loved ones understand and deal with the ALS & the 6 Stages of Loss. |
HELPING CHILDREN WHEN SOMEONE THEY LOVE HAS ALS I AM ALS provides resources for helping and supporting children. I AM ALS offers an email series to help you get the information you need at a pace that won’t overwhelm you. It is designed to pace you through the essential information you’ll need over the course of 8 weeks. Topics will include types of ALS, where to find care, clinical trials, emotional support, financial and insurance information, and much more. Sign up here.
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TALKING WITH YOUR DOCTOR
- Before talking with your doctor, make a list of items you'd like to discuss; don't rely on your memory!
- Ask a family member (not a spouse or partner) or friend to attend the appointment to take notes. This allows you to pay close attention to what the doctor is saying.
- Ask your doctor about their experience in working with ALS patients. This is the time to advocate for yourself, so don't be shy about asking! Having a doctor who is very familiar with ALS is important. Because ALS is a rather rare disease, many doctors have limited or no experience with it. Don't hesitate to ask for a referral to a doctor or neurologist who has experience working with ALS patients.
- Getting a second opinion.
- Is there a multidisciplinary ALS clinic nearby? (See below)
- If there is not a multidisciplinary ALS clinic nearby, ask for referrals to other specialists (physical therapist, occupational therapist, respiratory therapist, dietitian, speech language pathologist, social worker, mental health professional). Also, contact your local ALS Association and/or MDA/ALS Division for assistance.
- Ask about current treatments (both FDA approved and available through Expanded Access Programs).
- Ask about clinical trials.
- Ask about genetic testing. (See Taking Action page for info on Genetic Testing)
MULTIDISCIPLINARY CLINICS
Multidisciplinary ALS clinics bring together a team of specially-trained health care professionals who can address the many needs of people living with ALS, allowing them to receive care from each discipline during a single visit. Especially important, they are all experienced with ALS.
The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional and a liaison to The ALS Association and/or MDA-ALS Division.
To find a multidisciplinary clinic near you:
Multidisciplinary ALS clinics bring together a team of specially-trained health care professionals who can address the many needs of people living with ALS, allowing them to receive care from each discipline during a single visit. Especially important, they are all experienced with ALS.
The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional and a liaison to The ALS Association and/or MDA-ALS Division.
To find a multidisciplinary clinic near you:
