ALS RESOURCES

ALS (Amyotrophic Lateral Sclerosis) is most often a fatal motor neuron disease characterized by the destruction of nerve cells that control voluntary muscle movement such as walking, talking, eating, and breathing. The disease is progressive, meaning the symptoms worsen with time. There is no cure for ALS, but approved treatments to slow the progression exist, while extensive research is ongoing.

Although ALS is considered rare, it is the most common motor neuron disease, affecting people across all races and ethnicities. Most ALS cases (90 to 95 percent) have no known cause (sporadic ALS), while the remaining five to ten percent of cases are inherited (familial ALS). For those with the sporadic form of ALS in which there is no family history, there is not believed to be an increased risk of the disease for family members.

No single test can provide a definitive diagnosis of ALS. The diagnosis of ALS is primarily based on the symptoms and signs the physician observes and a series of tests to rule out other diseases. Physicians obtain the individual’s full medical history and usually conduct a neurologic examination to assess whether symptoms such as muscle weakness, atrophy of muscles, hyperreflexia and spasticity are getting progressively worse. Read more about how ALS is diagnosed.

At the onset of ALS, symptoms may be subtle and include muscle twitches, muscle weakness or slurred speech. The effects of the disease may first be noticed in the hands, feet, or limbs, leading to increased difficulty with daily activities such as buttoning clothing or increased tripping or stumbling.

As the disease progresses, muscle weakness spreads to other parts of the body leading to increased difficulty walking, chewing food and swallowing, speaking, and breathing. In the later stages of the disease, a feeding tube may be required, as well as a ventilator to aid breathing. Respiratory failure is the typical cause of death, usually occurring three to five years after symptoms appear. However, ten percent of patients live longer than 10 years from diagnosis.

While there is currently no known cure for ALS, many people with the disease can maintain an enhanced quality of life by utilizing available technologies, therapies and the resources of organizations that specialize in degenerative conditions. Additionally, there are currently two FDA approved drugs on the market and a consulting physician can help determine which may be most appropriate based on individual needs. Read more about how ALS is treated.

The following sites have additional detail on the topics above as well as information on treatment and ALS research:

1. Understanding ALS – Answer ALS
2. Amyotrophic lateral sclerosis (ALS) – Symptoms and causes – Mayo Clinic
3. Frequently Asked Questions About ALS – I AM ALS

• ALS: Caregiving Spouses support group
• ALS Patients, Family, Friends and Caregivers
• ALS Caregivers — Finding Time for Ourselves
• Living with ALS ~ For PALS ONLY
• ALS We are in it together
• Lou Gehrig’s Disease (ALS)
• Better Days With ALS
• KICK ALS!
• Our Lives With ALS
• ALS Sucks

I Am ALS Caregiver Needs

Team Gleason Support Services

ALS Association Caregiver Support

Respite care is necessary for caregivers. In addition to friends or family members, respite services are often available through your ALS Association Chapter or other local organizations. The social worker at your clinic may also be able to direct you to other resources or Medicaid/state services, if applicable.

Get Help and Support — I AM ALS

Medical Insurance and Medical Expenses

If you currently have healthcare coverage through your employer or individual coverage, you should check with your medical administrator to learn more details about your medical plan and how it covers the services and possible medical devices you may need over time, by calling the number of the back of your medical ID card. You may be responsible for certain out-of-pocket costs based on the plan design.

Short and/or Long-Term Disability

You may also have short and/or long-term disability coverage through your employer or insurer, which can replace a portion of your income when you meet the medical requirements. Please contact your disability coverage administrator to learn more about how to apply and qualify for these benefits.

I Don’t Currently Have Medical Insurance. Now What?

If you don’t currently have medical coverage, and have an ALS diagnosis, you may qualify for social security disability income benefits and Medicare to help cover your medical costs, regardless of your age. The determining factor will be your work history. There are several variables, such as when you worked and for how long, and at what age you were diagnosed, which will help determine whether you qualify.

To learn more about whether you qualify, you can visit the Social Security website or call 1-800-772-1213. To prepare for the application process, you can also go to Disability Starter Kits (ssa.gov) to find out all of the documents to gather for the application.

Medicare has specific guidelines for coverage for home health care, which includes physical, speech and occupational therapy, to be aware of. You may also qualify for Medicaid, however the qualifications vary by state. You may find additional details on these topics here: Get Help and Support – I AM ALS.

In collaboration with the Patient Advocate Foundation, The ALS Association provides, direct telephone access to Medicare experts who help navigate eligibility and enrollment coverage that impact access to care. You may call the ALS Medicare Resource Line at 1-844-244-1306 for assistance with any Medicare questions.

If qualified to receive benefits within the Medicare system and you or your family member are not receiving the benefits that should be provided, The Center for Medicare Advocacy is a good resource questions or to confirm what should be covered.

ALS Clinics

Many states and cities have ALS clinics. During visits, these clinics allow patients with ALS, their families, and caregivers to receive multidisciplinary support services all at one location on the same day to limit the need to schedule multiple visits by different providers to be assessed. ALS clinics are generally covered by most insurance plans and Medicare, but you may have out-of-pocket expenses. Please call your medical administrator or Medicare for more details.

Typically, these assessments are scheduled a few times a year and during these visits the person with ALS is assessed by neurologist, physical, occupational, respiratory and speech therapists, dieticians and social workers. During these assessments, you can learn a lot of information about your specific needs and disease progression. You may also meet with organizational representatives or equipment and technology companies. Talk with your treating physician about option that may be right for you. You can find an available ALS clinic or other centers of excellence on one of the links below:

• I Am ALS Clinic Finder
• Arc GIS Clinic Finder
• Your ALS Guide Clinic Finder

While not in every circumstance, as the disease progresses, people living with ALS can lose their ability to speak audibly. After your initial diagnosis, you may want to consider voice and message banking, while your voice is as strong as possible. Think of it as an insurance policy. These recordings can be converted into a synthetic voice that can be used when your voice becomes inaudible.

Once the voice/messages are recorded, when the time comes, they can be loaded onto speech generating devices to help you communicate. There are several different types of communication devices, so you will need an evaluation by a speech therapist to help you determine the best device and approach for you. The process for getting approval for speech generating devices can take several months, so you may want to work with your physician or clinic several months in advance to be evaluated and obtain approval. Some resources for voice and message banking are:

• Team Gleason Voice and Message Banking
• Boston Children’s Hospital Department of Otolaryngology and Tobii Dynavox Message Banking

I Am ALS

I Am ALS has a navigation service that provides a wide array of informational assistance which includes, financial and insurance assistance, clinical trials and research opportunities, employment and legal assistance, support with day-to-day activities and end of life care needs. More details can be found here: Navigation Program

Additionally, I Am ALS has compiled a list of all organizations in the United States that provide ALS assistance. They are grouped by the type of services they provide and what areas they serve: Support Groups Archive

Local ALS Chapter

The ALS Association partners with local chapters in each state and/or region, which employs people to provide real-time support in finding local care, equipment and caregiving service recommendations to support patients who need help. Many of these local chapters host support groups for people living with ALS and their family members. You can find your closest local chapter here: Local Chapters of The ALS Association | The ALS Association. As ALS progresses, these support groups, along with your treating physician, can be a source of information for working through issues with which you may be faced. Many of these chapters also have advocacy arms focused on public policy to serve the needs of ALS patients and research.

Other Clinic Support Groups

Clinics and organizations not affiliated with the ALS Association may also host support groups. Please check with your local clinic to inquire about support groups for people living with ALS as well as for caregivers and family members.

There are continuous ALS trials and research within the United States and abroad. Below are links with details about current ongoing efforts:

• ALS Signal: Clinical Research Dashboard
• Northeast ALS Consortium Trial Finder

We understand that there is a massive amount of information within the links and organizations shared on this page. Our goal is to share as much information here as we believe can be a resource for you through the ALS journey. Below are some categories and links that may be helpful.

Equipment and Technology Assistance

• Your ALS Guide: Equipment
• Team Gleason: Resources
• Your ALS Clinic

Home Modification

• Home Modification

Travel Support

• Team Gleason Adventures
• Your ALS Guide: Travel
• Traveling by Plane

As your journey progresses with ALS, you and your family members can be faced with some challenging issues. You can be faced with decisions such as whether to have a feeding tube or tracheostomy implanted, living with ventilator support, progression to the need for a wheelchair or hand assistive devices, along with the loss of auditability and ability to be self-sufficient. There is no question about it, these are hard issues to face and you don’t have to do it alone. Local support groups for people living with ALS, caregivers and other family members are helpful. Please also consider talking with a psychologist, family or other behavioral health therapist to help you through this trying time, as your mental health can play a significant role in how you cope with this disease and its progression.

There are many ways to take action and be a part of the fight to find a cure for ALS. The I Am ALS site lists a number of ways to get involved in legislative advocacy and community outreach.