4When you, or a loved one, is diagnosed with ALS, the days ahead may feel overwhelming and filled with emotion. What exactly is ALS? What is going to happen to me? How much time do I have left? What should I do now? These questions, and many others, might race through your mind in the days and weeks following your diagnosis.
“Accept the fact that you have this disease, stay positive and surround yourself with positive people.”
– Donald, Patient diagnosed with ALS
You might feel sad, and grieve the losses that come along with receiving such a prognosis. Many ALS patients feel alone, never having known another person who has suffered from ALS.
You are not alone! Support is available for you and your family. There are several ways to find comfort and encouragement from others who truly understand what you are going through. Online ALS communities and local in-person support groups are available to you and your family.
“Never give up, do what you love as long as you can, and we hope you have a strong faith as this will carry you through.”
– Mark, Patient diagnosed with ALS
During this difficult journey, it is important to seek support, and use it often. Below are some resources to get you started.
RESOURCES FOR PATIENTS & FAMILIES
University of Michigan ALS Clinic
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. PALS can be notified of clinical trials and research studies not only at University of Michigan but all across the country.
ALSA Patient Bill of Rights
Patients Like Me www.patientslikeme.com
“Patients Like Me” is an online community dedicated to helping people learn more about ALS, share their stories and experiences with other people 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” 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” 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.
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:
- Living with ALS ~ For PALS ONLY
- Someone I love has ALS
- ALS We are in it together
- Lou Gehrig’s Disease (ALS)
- Better Days With ALS
- ALS: Caregiving Spouses support group
- ALS Patients, Family, Friends and Caregivers
- ALS Caregivers — Finding Time for Ourselves
- KICK ALS!
- Our Lives With ALS
- ALS Sucks
- Familial Amyotrophic Lateral Sclerosis (fALS/MND) Support Group
ALS Association Local Chapter
The ALS Association website provides links to all of the regional chapters’ websites, where you can find more information on local support groups and events, and find contact information for local representatives.
ALS of Michigan
ALS of Michigan hosts free, open support groups for PALS and their families, friends and caregivers. To be added to a support group reminder mailing list please call (800) 882-5764.
“Look to your family and friends for help. Take a day at a time. Look for someone to talk to that knows about ALS…what ALS does or what you’re going through or feeling.”
– Patient diagnosed with ALS