Patient & Family Support Online Resources
The National ALS Registry
Enroll now in the national registry! By signing up you will help the ALS community understand how many people have ALS. You can complete surveys to help the ALS community understand who gets ALS and what factors affect the disease by answering questions. Persons with ALS (PALS) can be notified of clinical trials and research studies across the country.
ALSA Patient Bill of Rights
http://www.alsa.org/als-care/patient-bill-of-rights.html
Be informed about your rights with the Patient Bill of rights curated by the ALS association. You have the right to receive comprehensive information about ALS , including options and resources for your health care needs.
Patients Like Me
“Patients Like Me” is an online community dedicated to helping people learn more about ALS, share their stories and experiences with other persons with ALS (PALS), and find support from others who are living with ALS. This chat room was founded by a family affected by ALS. Registration is free.
ALS Chat
“ALS Chat” by ALS forums is a volunteer resource providing an internet vehicle for information, discussion, and support for anyone affected by ALS. Both PALS and caregivers can register for free.
Daily Strength
“Daily Strength” offers free, anonymous support for a number of concerns, including ALS. Type “ALS” in the search box on the homepage, and you will find the ALS Support Group page, where you can post your thoughts, respond to others’ notes, or read through experiences shared in the chat room.
ALS for Dummies
Get first-hand experience from Guilhem Gallart who was diagnosed with ALS. He walks through his own trials and tribulations of living with ALS. His own advice and encounters living with ALS will be relatable to many dealing with ALS.
Facebook Support Groups
Facebook ALS groups have provided support for a number of families in the ALS Clinic. Type “ALS” in the search box for “groups”, and you will find a number of ALS-related groups where you can post your thoughts, respond to others’ notes, or read through posts shared on the wall. Here are just a few patient recommended groups:
Counseling and Therapy Resources
- Enter your zip-code, insurance, and you can choose from the list of “issues” (e.g. chronic illness).
- Each provider in-network, in your area, will appear, each with a short biography so you can get a feel for them before calling to schedule.
- Online therapy with licensed therapists
- Getting started:
- Get an assessment: chat with a matching therapist to identify your therapy needs
- Choose the Right Plan: Choose a payment plan that best suits your budget. Plans start at $65/week.
- Find your Match: We’ll help you find the best therapist for you
- Begin Therapy: Start messaging your primary therapist anytime, anywhere.
- During Therapy:
- Your Own Therapist: Once you’re matched, you’ll be working with the same licensed therapist every time.
- Write When You Want: You can set aside some time every day, or write when the mood strikes. Your room is always open.
- Regular Responses: Therapists respond 1-2 times per day. If you need more, simply schedule a video chat.
Home Care (Search for Senior Care)
You deserve the best care when you need assistance with activities of daily living. In home services allows patients to receive day to day help with personal care.