Next steps after an ALS diagnosis

Last updated June 1, 2023, by Susie Strachan
Fact-checked by Patricia Silva, PhD

Being diagnosed with amyotrophic lateral sclerosis (ALS) can be overwhelming and confusing. It is understandable to feel upset, angry, and isolated after hearing the news, and it can be difficult to know what to do next.

Keep in mind that there are people who are able to offer support during this process, as well as a range of resources to provide guidance, a source of community, and hope.

Some steps to take that may help you move forward with confidence after an ALS diagnosis include educating yourself on both the disease and treatment options, putting together your care and support team, weighing your financial options, and looking at the variety of resources available to you, among others.

Getting a second opinion

ALS has many symptoms in common with other diseases, and there is no single test that can provide a definitive diagnosis. ALS symptoms can also vary from person to person, making diagnosing it even more challenging. Doctors confirm an ALS diagnosis by observing and tracking symptoms over time and conducting a series of tests to rule out other conditions.

ALS usually starts with muscle weakness and twitching in the legs or arms, slurred speech or trouble swallowing, symptoms that occur in other motor neuron disorders, such as spinal muscular atrophy and progressive muscular atrophy.

After an initial ALS diagnosis, you may want to consider getting a second opinion, as it can help prevent a misdiagnosis and ensure all similar conditions have been considered. Speaking with a different specialist can also give you more time to process and learn about ALS, and ask questions about ALS-related changes, treatment, and tracking disease progression.

Accepting your diagnosis

Dealing with a diagnosis of ALS can be challenging. Shock often limits how much information a person can take in at once. Afterward, it can be hard to stop thinking “why me?” or whether there was anything that could have been done to prevent it.

Feelings of fear, denial, and grief are common and may lead to other mental health issues including depression and anxiety. In fact, almost one-quarter of people living with ALS experience depression, and the risk is often highest immediately before a person is diagnosed and soon afterward.

Both anxiety and depression can be treated in a variety of ways depending on the person’s situation and specific condition. Treatment strategies may include counseling or talk therapy, medications, and talking with others in a support group.

It’s also easy to slip into denial as a coping mechanism. And it is understandable to feel anxious about the life changes ahead — worrying about symptoms and speed of degeneration, life expectancy, and becoming a burden on family or friends.

Facing the diagnosis head-on can be difficult, but it can help you move forward. Living with ALS means making decisions about treatment options, learning about the disease, and having difficult yet necessary discussions about palliative and end-of-life care.

These practical decisions can also affect a person’s mental health, and accepting the diagnosis also means working through complex emotions. Asking for help and talking with family and friends may help you feel less overwhelmed by all the decision-making, as well as easing anxiety and uncertainty.

Educating yourself

Learning about symptom management, what does and doesn’t worsen the condition, what can help, and what to avoid can help you come to terms with your diagnosis and determine how best to navigate life with ALS.

ALS clinical specialists are often the first source of information for people after a diagnosis and can provide information on disease management and treatment approaches, among other aspects.

Reading published work from researchers investigating the cause of ALS, understanding the different forms of the disease, and learning about available and upcoming treatments aimed at slowing down and eventually curing the disease can be empowering and provide hope. Scientific and clinical research information is listed online at sites such as the World Federation of Neurology, and Clinical Trials.

National and international organizations and charitable foundations offer a large body of knowledge and information about ALS and can connect new patients to local care services and clinical trials.

ALS News Today has the latest news and research about ALS, resource pages about the disease, and life stories and first-hand perspectives by people with ALS.

Deciding on a treatment approach

A number of treatment options may be explored based on your specific symptoms and situation. It is important to discuss these with a doctor and other healthcare professionals to get a personal approach to treatment.

Approved treatments for ALS can minimize complications from the disease and ease discomfort. Four types of medications are currently approved by the U.S. Food and Drug Administration to treat ALS:

• Riluzole has different formulations, under the brand names of Rilutek, Tiglutik, and Exservan, and is thought to work by reducing molecular signaling, which can overstimulate and damage nerve cells.
• Radicava (edaravone) works by reducing oxidative stress, a type of cell damage thought to drive nerve cell death in ALS.
• Relyvrio (sodium phenylbutyrate and taurursodiol) reduces cellular stress pathways and promotes nerve cell survival.
• Qalsody (tofersen) is an RNA-based therapy designed to reduce the amount of toxic SOD1, a protein that builds up and forms toxic clumps in some ALS patients.

A variety of therapies may also help manage specific symptoms, such as muscle spasms, difficulty breathing, swallowing and excessive saliva, and pseudobulbar affect.

In addition to medication, people with ALS can benefit from supportive forms of therapy, including physical therapy, occupational therapy, speech therapy, respiratory therapy, psychotherapy, and counseling.

Experimental therapies are also moving through the pipeline for the potential treatment of ALS, including stem cell-based therapies and inhibitors or promoters of various cellular actions. Participation in a clinical trial for an investigational therapy may be an option for those who are interested and meet the qualification criteria. Your doctor can help you decide if a clinical trial may be the right fit for you.

Putting together a support team

A strong support team will include healthcare experts who have in-depth knowledge of ALS, as well as caregivers and hired help, who can provide emotional and practical support.

Clinical care teams, who work directly with people with ALS, may include:

• neurologists
• physical/occupational therapists
• speech therapists
• mental health professionals
• respiratory therapists
• dietitians
• social workers/case managers

Some people with ALS may not have a family member or other person who can be their caregiver. Or perhaps the primary caregiver encounters a problem that doesn’t allow them to continue or they become overwhelmed with the responsibility.  This is when alternative options for support should be considered.

A good place to start is with a social worker at an ALS clinic or ALS organization, who can provide connections to local support groups, referrals to home care and respite services, or information about short-term stays in a care home while the caregiver takes a break.

If you don’t have someone who is able to act as a full-time caregiver, moving to an ALS residence may be an option. These are specialized nursing centers in a residential setting. Other places include personal care homes, group homes, or assisted living facilities. Financial assistance is available, and costs for these accommodations can be paid by Medicaid for those who have long-term care coverage.

Clinical teams can also share information about palliative and end-of-life care, so people with ALS are aware of the available options as the disease progresses. Palliative care — specialized medical care focused on managing symptoms and maintaining quality of life — can be done at home, in a hospice, or in another healthcare setting. Planning discussions can include family and friends.

Using a voice bank

Voice banking records samples and creates a customized synthetic version of a person’s own voice to preserve speech. As ALS affects a person’s ability to speak as it progresses, consider doing this early after diagnosis to create a stock of spoken words for communication software, such as text-to-speech generating devices. If a person with ALS loses their ability to speak, the digital version of their voice can be used to communicate with others.

In the U.S., a number of companies offer ALS voice banking services, along with some chapters of the ALS Association, which also has financial assistance available.

Similarly, message banking records commonly used phrases in a person’s own voice, retaining cadence and tone. The MP3 files are stored on a playback device that has a text-to-speech function.

Finances and insurance

The cost of ALS treatment in the U.S. is high, with estimates between $16,000 and $200,00 annually per person, which can place a heavy financial burden on the person and their family. These costs cover everything from clinical and in-home care to ventilation and medications.

Anybody with ALS who receives Social Security Disability Insurance is automatically eligible for Medicare without a waiting period, which pays a portion of the cost of medical care.

• Medicare Part A pays for hospital stays, hospice, and some home healthcare.
• Medicare Part B pays for treatment by healthcare professionals, including counseling, some medical equipment, and some outpatient treatment. There is a monthly premium charge.
• Medicare Part C involves select private insurance companies that offer reduced premiums, deductibles, and coinsurance payments.
• Medicare Part D is the prescription drug benefit.

People with limited incomes may be eligible for help from Medigap federal and/or state programs.

The ALS Association and the Patient Advocate Foundation (PAF) run a resource phone line connecting people with ALS with help to navigate insurance programs, including Medicaid, Medicare, and private health insurance.

A worker with ALS may be eligible for disability benefits from their employer or from private disability insurance.

Charitable foundations raise money for research and also to financially support people with ALS, for example, for aids and adaptations for mobility and other daily tasks.

The following organizations offer grants to people with ALS in need:

• ALS Association Financial Assistance Grants
• Healthwell ALS Premium Assistance Fund
• Les Turner ALS Foundation Grants & Equipment Assistance
• Needymeds
• Patient Advocate Co-payment Relief Fund for ALS
• Project Main Street Financial Help Fund.

U.S. military veterans are eligible for financial and medical support through Veterans Affairs.

Support and resources

Coping with changes due to ALS-related symptoms can be difficult emotionally and can have a negative effect on mental health.

Seeking professional help, joining in-person and online ALS support groups, and making self-care a priority can be helpful when processing a new diagnosis.

Support groups bring together people living with ALS into a peer-led community to share experiences, deal with emotions, find coping strategies, and get advice from healthcare professionals.

The International Alliance of Associations offers a list of country-specific organizations around the globe, many of which offer in-person and online support.

Other online and in-person support groups are run by:

• ALS Association
• ALS Hope Foundation
• ALS Ride for Life
• Les Turner ALS Foundation
• Muscular Dystrophy Association
• ALS Canada
• Motor Neurone Disease Association (UK)
• Motor Neuron Disease Scotland.

ALS News Today hosts online forums, as well as a Facebook page, where people with ALS can connect with one another.

Veteran resources

Although the reasons are unknown, military veterans are at a higher risk for developing ALS, experiencing the condition at an estimated rate of 1.5 times the general population.

As of 2008, U.S. military veterans with 90 or more days of active service are eligible for disability benefits and healthcare coverage for ALS from the U.S. Veterans Affairs (VA).

These benefits include medical treatment and equipment and grants for adaptive wheelchair vans, daily home health assistance, nursing care, home accessibility adaptations, and monthly financial support for additional care.

The VA operates ALS clinics in major cities in the U.S., with multidisciplinary teams offering neurology, social work, nutrition, respiratory, rehabilitation, and prosthetics services. Caregiver support programs are also available at VA medical centers.

Advocacy

It’s not uncommon for people living with ALS and their caregivers to want to give back to the community. Some become advocates for ALS-related organizations or charities, taking on speaking roles at educational events, and working to change public policy around ALS to improve the lives of people with the disease.

Advocacy efforts may focus on access to timely and affordable care, funding ALS research, or engaging healthcare professionals in discussions about improvements to care, among other issues.

Advocacy can also take the form of mentorship, offering lived experience to those who have been recently diagnosed with ALS or participation in awareness and fundraising events.

ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.