The ALS-Lou Gehrig's Disease Support Center

Every person is unique, but when you face a challenge like ALS (amyotrophic lateral sclerosis) you are never alone.  Countless men and women have faced exactly same diagnosis and have survived for years - even decades -- and thrived.  The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.  

TSC has scoured the Internet and assembled links to the very best ALS resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges that you're facing now.

As you’ll see, we always welcome your ideas and suggestions to make this ALS guide even more helpful to survivors like you.  

 

JUST FOUND OUT 

Survivors Say: Best Resources for ALS

• ALS Association: What is ALS?
• National Institute of Neurological Disorders and Stroke (NINDS) Amyotrophic Lateral Sclerosis Information Page

The Big Picture

Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles. At the present time doctors do not understand why ALS affects some people and not others.  There is no cure and treatment doesn't always work well. 

ALSA.org: Tips for Newly-Diagnosed ALS Patients - Straight-from-the-heart advice from an ALS patient

Learn the most common signs and forms of ALS here:

• ALS Association: Symptoms of ALS
• ALS Association: Forms of ALS

Your ALS

Since ALS is a progressive disease it is important to understand what stage your ALS is in so you can better plan your treatment. You'lll find an excellent overview of treatment and prognosis at:

Neurologychannel: Amyotrophic Lateral Sclerosis (ALS)/Lou Gehrig's Disease Treatment, Prognosis

Do you want a second (or a third) medical opinion? Here's how to get a good one: 

ALS Association: 2nd Opinion FAQs

Your World

After being diagnosed with a progressive and devastating disease such as ALS it's understandable for you to experience a flood of emotions. Talk with your loved ones and, when you're ready, make contact with a support group, whether online or in-person. To help get a handle on your emotions visit: 

• MDA ALS Division: Emotions
• ALSForums.com

After a diagnosis such as ALS it can be difficult to know just what to tell family and friends. For helpful advice on what to say and what not to say, especially to children, visit:

Talking to Children and Teens About ALS  [PDF]

ALS Myths

• ALS Association: Facts You Should Know About ALS

Information and Recommended Links for Survivors

• Focus on ALS: Coping with ALS
• Les Turner ALS Foundation: Coping with ALS [PDF]
• ALS Forums: Go with the Flow: Coping with ALS
• Living-with-ALS.org: Randy's ALS Manual
  

Types of Treatment

To date there is just one medication used to treat ALS, riluzole (Rilutek) which reduces the damage to motor neurons. You may be prescribed other drugs to deal with symptoms and improve your quality of life:

• University of Maryland Medical Center: Amyotrophic Lateral Sclerosis - Treatment
• Yahoo! Health: Amyotrophic Lateral Sclerosis: Treatment Overview

Because ALS is degenerative, treatment may focus on physical therapy to help you work around the limitations imposed by the illness:

ALS Association: Basic Home Care for ALS Patients (PDF)

Treatment Side Effects

Rilutek.com: What are the side effects of Rilutek?

New Therapies

Research into genetics and stem cells have some promising results, even if new treatments for ALS are still years away. If you're interested in joining a clinical trial, check out this site:

The ALS Association: Clinical Trials

Home Therapies

There are ways to treat the early stages of ALS at home; learn how you can prolong health with simple therapies:

• WebMD: Amyotrophic Lateral Sclerosis (ALS) - Home Treatment
• ALS Association: Basic Home Care for ALS Patients [PDF File]

Creating a Support Circle

• Set up your TSC survivor profile.
• Join support groups of other survivors or start your own.
• Interact and provide updates on your profile or the TSC forums.

Insurance & Work Matters

Insurance Matters

If you are 65 or older, read about how your Medicare benefits apply to ALS:

ALS Association: Medicare, Benefits and the Waiver - An Overview

Work Matters

Thanks to the American with Disabilities Act you do not have to disclose your disease to your employer unless your ALS affects your ability to perform your work-related duties. Learn more at:

U.S. Department of Justice: Americans with Disabilities Act

Health-care Providers Who Can Help

  As an ALS patient, you are likely to be under the care of a neurologist, though you may see other health-care providers, including your regular primary care physician (and a gynecologist, if you're a woman), and given the great emotional strain living with ALS can bring, you may want to turn to a psychotherapist/counselor for help.

Resources to Find Doctors

To find a neurologist, go to the American Academy of Neurology's directory:

Thebrainmatters.org: Find a Neurologist

The Emotional Rollercoaster

Living with the knowledge that you have a progressive neurological disease is a huge emotional strain. For some people the emotional aspects of this disease are worse than the physical ones.  What’s important is that you continue living your life as normally as possible, participating in the same daily activities you've always enjoyed.

Support groups are also important, whether you create one yourself or join one that meets in person or online. Keep phone numbers of your support team handy at all times. A positive attitude will go a long way in smoothing out the emotional rollercoaster you’re sure to be on.

Books Survivors Recommend

• Eric Is Winning - Beating a Terminal Ilness With Nutrition, Avoiding Toxins And Common Sense by Eric Edney 
• I Choose to Live: A Journey Through Life with ALS by William Sinton
• If They Could Only Hear Me: A collection of personal stories about ALS and the families that have been affected by Ed Rice
• Tuesdays with Morrie by Mitch Albom
  

Communicating with Your Health-care Providers

When your doctor talks to you about your condition your mind may simply shut down; this is common. After your appointment you may not be able to recall much of what your doctor said. One way to solve this problem is to bring a friend or family member with you to your appointments. Encourage your advocate to ask questions, too, and to take notes about what the doctor says. You need to ask your doctor the tough questions – even when you may not want to hear the answer. Write down any questions you have before going to your appointment and don’t be afraid to ask your health-care provider to repeat things or to explain them in different terms that you can better understand.

Dealing with ALS: Information and Recommended Links for Co-Survivors
 

How You Can Help

• Assist your friend or family member with day-to-day living.  Find a balance between helping and allowing the ALS patient to do things for themselves; do not make them feel as if they are becoming a burden.
• Preserve your friend or family member's daily activities. It's normal to feel protective, but excluding patients from activities or decisions will contribute to feelings of helplessness and victimization.
• Involve your friend or family member with others. Don't focus exclusively on their disease and treatment. Talk to them about yourself or make plans to visit friends or do something you enjoy. A survivor involved with others has a better chance of avoiding feelings of abandonment.

What to Say    

• "I will support your decisions about treatment."
• "You seem upset. Do you want to talk about it?"
• Tell them how much you care and that you're there if they need you.

What Not to Say

• "Don't worry, we'll find a way to make this all go away."
• "We'll go to every hospital and spend as much money as it will take to get you well."
• "You won't have to lift a finger; I'll do everything."

Things You Can Do to Help Every Day

• Providing day-to-day support is a wonderful gift to offer a loved one with ALS. For a friend or neighbor you might offer to help out by picking up the mail or newspaper, making meals, going grocery shopping, etc. If the patient is a family member, help out with chores or other duties they may have fallen behind on.

How to Build a Support Network

• Set up your TSC co-survivor profile.
• Create a support group for your friend or family member.
• Interact and provide updates on how your loved one is doing.

How to Help a Survivor Deal with Day-to-Day Challenges

• One family’s story of hope: Ohio Family Plagued by Familial ALS
• Psychological & practical considerations for coping with ALS: Focus on ALS: Psychological Aspects

Remission / Recovery / Recurrence

Unfortunately, there is no recovery from ALS. But there is hope: Research is progressing and new discoveries are being made regularly. As an ALS patient you and your doctor will focus on ways to make your life easier, as symptoms progress, and to keep you as comfortable as possible. The drug Rilutek may prolong life by a few months too.

Since this is such a difficult time, both for you and those you love most, take time to share with others how you're feeling -- emotionally, mentally, and spiritually. Telling your story and sharing your experiences with others can help to put things into perspective and you may be able to offer perspective and even hope to others who are going through a similar journey themselves. 
    
For an uplifting and encouraging account read:

Bert Woodard's Inspirational Message

Give Back

What helped you while you were dealing with getting a diagnosis ALS and as the disease has progressed? Take a look back at your journey and share with others: What helped you and what do you wish you would have known or done? You can create a TSC profile, reach out to others, join support circles, and share your story here at The Survivors Club. Here are some charities working to increase ALS research and support to patients:

• ALS Association: Gifts in Tribute
• Charity Navigator: The Amyotrophic Lateral Sclerosis Association

Ultimately, ALS is considered a terminal disease. Yet many patients and their families and friends are unprepared when death comes. If you find out that your disease has progressed to the point that treatment is no longer effective, it may be time to turn to these resources to plan and prepare:

• ALS Forums: Coping with Death

When You're Facing Death

• FamilyDoctor.org: Cancer - Palliative Care
• MedlinePlus: Hospice Care
• Medicinenet.com: Loss, Grief and Bereavement