We’re so sorry you’ve heard those words, but we’re so glad you found us. We personally know how devastating this news can be. We want you to know you’re not alone. We are here for you. A good start is reading this.

There are many types of ALS symptoms and they can vary person to person.

Limb-onset ALS occurs in your spinal cord and affects your arm, legs, hands, or feet. One of the first symptoms could be unexplained tripping or foot drop. (Foot drop is when you have trouble lifting the front part of your foot.) This is the most common type of ALS.
Bulbar-onset ALS occurs in the bulbar area — your face, mouth, throat, or tongue. A telltale sign of bulbar-onset ALS is changes in speech or singing. This type of ALS is less common than limb-onset ALS.

Some people have a very slow progression spanning over a decade or more, while others will experience rapid progression over several months.

Unfortunately, there is no way to predict how an individual’s ALS will progress and whether progression will be consistent. This is why it’s so important that you continue assessments by your neurologist and health care team.

Remember: ALS symptoms do not begin all at once or suddenly. Symptoms may start subtle and progress to difficulty climbing stairs, walking, lifting items, writing/typing, feeding yourself, swallowing liquids, experiencing shortness of breath, speech changes, trouble with decision-making, or uncontrolled crying or laughing. We know it can be overwhelming to navigate the many challenges that come up as you progress in your ALS diagnosis and we are here to help. Reach out today and get support.

Yes. There are generally two types of ALS — sporadic or familial — with many subtypes. Sadly, we don’t know yet what causes sporadic ALS. It may be environmental or genetic factors. And the scary thing is approximately 90–95% of ALS cases are sporadic.

Familial ALS (fALS) refers to ALS cases in which there is a genetic history of ALS in the family (meaning more than one person in the family has been diagnosed). This type of ALS accounts for 5–10% of cases. Over the past ten years, the discovery of genes related to ALS has really advanced. Researchers have found 30 genes implicated as risk factors for ALS. This is great news because it shows several potential targets for therapies that will focus on ALS.Learn more about ALS and genetics here.

There are several types of motor neuron disease (MND) and ALS is the most common. Others include primary lateral sclerosis (PLS) and hereditary spastic paraplegia (HSP). Unlike the other MNDs, ALS is characterized by progressive degeneration of both upper and lower motor neurons. In other words, ALS affects all of your body rather than one part.

Today, researchers think there may be a variety of factors in each individual with ALS that lead to this progressive motor neuron degeneration. The onset, progression, timing and sequence of the degeneration may be different for each person — and typically is different. In other words, everyone’s ALS journey will be unique. Please take the time to educate yourself and take steps, with your doctors, to develop the best quality of life possible for you and your family. If you’re feeling lost on where to start, we are here to help. Reach out at any time.

For the past 10 years, gene discovery related to ALS has been a big deal in the scientific world. Researchers have found more than 30 genes as risk factors for ALS. Still to understand: how these genes interact with the environment. This shows us just how complicated ALS is, but it also gives us several potential targets for ALS therapies. Yay science! You can learn more about ALS and genetics here.

Emotionally, spiritually, mentally — yes. If you’re asking about physical pain — it all depends on the individual and type of ALS.
Studies suggest 15–85% of people living with ALS experience some degree of pain depending on the duration of the disease. Muscle cramps and joint pain appear to be a main source of pain. There are both pharmacological and non-pharmacological treatments available, and these are tailored to the individual. Let your health care team know if you’re experiencing pain so they can pursue pain management options for you.

Here are a few misconceptions we’d like to clear up: 

• ALS is not Lyme disease.
• ALS can affect ANYONE, in any age group (including, in rare cases, teenagers), and of any gender, race, or ethnicity.
• ALS is not contagious (no instance of contagion has ever been discovered).

Until recently, there was only ONE medication for ALS — the ventilator-delaying riluzole.

Now there is edaravone (Radicava), which may slow the progression of ALS in some people, and there are several promising treatments in clinical trials. Improving clinical trials for ALS is a major focus for I AM ALS.

Technology also has improved dramatically. Power wheelchairs provide healthy seating, mobility, safety from falls, and a level of independence that wasn’t possible even 15 years ago, and communications hardware and software enable people with ALS to interact and contribute to conversations and work.

The FAQs you’re currently reading were created by a 95% paralyzed person living with ALS (Greg Kenoyer) using eye gaze only. How incredible is that?

These diseases include cervical spondylosis with myelopathy and radiculopathy, multifocal motor neuropathy, myasthenia gravis, benign fasciculations, post-polio syndrome, primary lateral sclerosis and progressive muscular dystrophy (Source: Epocrates 2019).

The short answer is yes. people living with ALSs’ bodies are weakened and more susceptible to disease. It also takes longer to recover from illness, because the body is constantly stressed from fighting ALS and has scant reserves.

If you live or work in an environment that brings you into contact regularly with those who are sick, you should discuss this with your doctors.

Every person living with ALS progresses differently. You’ll need to discuss your symptoms with your doctors to figure out which, if any, treatments and medications might be right for you. You can see which treatment and clinical trials are currently available here.

The ALS Functional Rating Scale (revised) (ALSFRS-R) is used in the ALS clinic and as a part of research trials to monitor your function and how ALS is affecting your body.

It’s a questionnaire-based scale that measures and tracks the changes in physical function over time. It’s widely used in clinical trials and has been used and revised since the 1990s. It measures 12 aspects of function, ranging from ability to swallow and use utensils, to climbing stairs and breathing. Each function is scored from 4 (normal) to 0 (no ability). There is a maximum score of 48.

A series of these tests can be used to judge the rate of progression.

Currently, the FDA will accept ALSFRS-R as a primary outcome measure for pivotal ALS trials for possible approval. They do ask that missing data from any cause is addressed in any analysis of this measure. Because the ALSFRS-R is not sensitive to some important changes and requires rigorous training to acquire good data, there is great interest to develop better outcome measures. 

A possible alternative to ALSFRS-R, the ROADS (Rasch-Built Overall ALS Disability Scale), is in development.

ROADS includes 28 daily activity questions such as “Can you blow out a candle?” or “Can you roll over in bed?” The person living with ALS answers either 0 (unable to perform), 1 (abnormal: able to perform but with difficulty), and 2 (normal: able to perform without difficulty), allowing for improved answering that may be beneficial for ALS clinical trials. It is important to start to incorporate ROADS in trials of new therapeutic agents in ALS. This is how we will learn if it is better than current outcome measures and its validity.

Your team members may include a respiratory therapist or pulmonologist, nurse or nurse practitioner, physical therapist, occupational therapist, speech language pathologist, dietitian, social worker and a liaison from The ALS Association or Muscular Dystrophy Association.

During your clinic visits, you can expect to receive strength (grip) tests, pulmonary function tests (the status of your breathing), various blood tests and other specialized tests depending upon your unique needs.

Remember, YOU are the most important member of your team and don’t be afraid to ask questions. Click here to find your ALS clinic and click here to review questions to ask your health care team at the clinic.

Studies have shown that a high-calorie, high-carb diet is beneficial for ALS. This, of course, doesn’t mean you should adopt an ice cream and cake diet. (Though ice cream and cake are super tasty.) Eat healthy, but don’t skimp the calories. If your neurologist has not connected you with a nutritionist, ask that they do so. To read an FAQ created by a dietician who works with people living with ALS, click here.

Commonly, a pulmonologist, respiratory therapist or neurologist will discuss the use of  NIPPV when forced vital capacity (FVC), a breathing test conducted in clinic, is <50% of predicted or when negative inspiratory force (NIF), or force generated while sucking in, is abnormal. In the beginning of your ALS journey, this non-invasive ventilation may be offered in different forms — bilevel positive airway pressure (BiPAP) or trilogy (AVAPS) — and is normally used at night and may be used up to 24 hours/day as ALS progresses.

When and whether to use NIPPV is something you should discuss with your doctor. The use of non-invasive ventilation has shown to have a positive impact on the quality of life and survival of people with ALS. Learn morehere.

Per Johns Hopkins University:
“A tracheotomy or a tracheostomy is an opening surgically created through the neck into the trachea (windpipe) to allow direct access to the breathing tube and is commonly done in an operating room under general anesthesia. A tube is usually placed through this opening to provide an airway and to remove secretions from the lungs. Breathing is done through the tracheostomy tube rather than through the nose and mouth. The term ‘tracheotomy’ refers to the incision into the trachea (windpipe) that forms a temporary or permanent opening, which is called a ‘tracheostomy;’ however, the terms are sometimes used interchangeably. “

Be aware that invasive ventilation treats respiratory failure but does not stop the disease progression. Twenty-four-hour care will be required. There are resources and webinars available through NEALS and Your ALS Guide.

• PEG (percutaneous endoscopic gastronomy), which may be done under general anesthesia. This is the most common type of G-tube.
• RIG (radiologically inserted gastrostomy), which is done under twilight sleep and/or local anesthesia. This G-tube is used when breathing is an issue.
• PIG (per-oral image guided gastrostomy), which is least common.

The various types of tubes include:

1. Danglers, which are tubes with 12-18” of external tubing and usually an internal bolster to prevent the tube from pulling out (which is a scary but not grave problem). These can last for years before needing replacement. Some danglers can use internal balloons instead of the solid bolster. These will eventually fail and need replacement.
2. Low profile or button, which does not have the long external tube but does require an extension tube for use. This type can have an internal bolster but more commonly uses an internal balloon. Just as the above, these balloons will eventually fail.

Consider a feeding tube when you have difficulty swallowing or chewing food, maintaining weight, staying hydrated, or if your breathing tests show decreased function.

The operations used to place a feeding tube are normally done on an outpatient basis. While tubes can be placed under twilight or mild sedation for people with breathing impairment, there is a point at which any operation is too risky. If possible, get surgery done early in your ALS journey. Many people living with ALSs receive their tubes while they can still eat and continue to enjoy regular food. They then begin to use their tubes gradually, sometimes for extra hydration or to avoid swallowing pills.

Some people living with ALS choose to forego a feeding tube — this is entirely your choice.

Familiarize yourself with Medicare hospice benefits so you can make an informed decision when the time comes. Many people living with ALS have lived a long time while receiving Medicare hospice benefits. Some with ALS opt for hospice teams while they continue to use normal benefits and insurance and receive approved treatments. The word hospice has both a benefit meaning and a care meaning, and it’s important to understand both.

Once under hospice care, your treatment choices may be limited, especially if those treatments are considered life-extending. For example, you may not be allowed to begin using a ventilator, to have Radicava infusions or enroll in a clinical trial.

Before entering hospice care, talk with your health care team, family and support network to ensure this is the next best step for you.

There is also preclinical evidence that cannabis could impact the progression of ALS but there is no clear consensus on a specific strain, route of administration or dose for use in ALS. There are a couple of ALS trials underway to test some of the benefits of cannabis.

Cannabis laws vary widely between states. Talk to your health care team before trying marijuana.

Clinical trials are studies in which researchers investigate whether a therapy works in treating or curing a health condition. People are assigned to control and intervention groups — the investigational therapy is given to people in the intervention group, and a placebo (see below for definition) is given to people in the control group. Before any clinical trial begins for a new therapy, the researchers must submit an Investigational New Drug Application to the FDA.

In observational studies, researchers study people without trying to affect them by giving them drugs, treatments or therapies. The goal is to gather information and compare changes over time. This may lead to new clinical trial possibilities, diagnostic tools and trends about people living with ALS. This article provides a detailed description of clinical trials.Thispage from Neals.org provides terms and definitions you may come across while looking for a clinical trial.

By participating in a clinical trial, you contribute valuable medical information to help advance understanding and treatment of ALS for you and others. Clinical trials offer the possibility to receive investigational therapies and products not currently available. Trials help determine if a treatment is safe, effective and whether it can slow the progression of ALS symptoms. Some trials look at ways to improve quality of life issues and find diagnostic tools. While in a trial you have access to an expert team that may give you a deeper understanding of ALS and the treatments available. 

Some studies have shown the increased assessments and visits during trials lead  to better patient outcomes. There is increased hope patients experience participating in a trial.

Some risks of clinical trials include experiencing possible side effects of the investigational therapy, receiving a therapy that may not be effective, potentially having to discontinue other medications and supplements in order to participate in the trial, and more. It is also important to consider direct and indirect costs associated with trial participation such as travel to/from a trial site, undergoing additional tests, going to more medical appointments, possible time away from work for you and/or your caregiver, and more. 

Please talk with a trial research coordinator to get a detailed understanding of the risks and costs associated with a specific clinical trial.Trial sponsors will cover costs of the trial drug, assessments, and sometimes travel expenses but there may be some costs billed to your insurance. This information will be in the informed consent form. It is important to read it and ask any questions before agreeing to participate.

Although many involve investigational medications, some studies test other elements such as your voice, technology, diet, supplements and therapeutic devices.

A placebo is made to look like the investigational therapy but is made with inactive ingredients that should not have an effect on a trial participant’s health. Some people experience a placebo effect. A phenomenon where people experience a benefit due to expectations that the treatment is working. You and typically the medical team administering the trial, will not know whether you’re receiving the placebo or the investigational therapy. This article provides a detailed description of how placebos are used in clinical trials.

By having some clinical trial participants receive a placebo instead of the investigational therapy, researchers can measure the effect of the investigational therapy in comparison to its absence on someone living with ALS.  This allows doctors and researchers to scientifically verify if the therapy is effective at treating the condition.

Open-label trials do not require placebo as all participants receive active treatment. Thank

This article provides a good summary of placebo use in clinical trials.

Researchers can disclose whether you received the investigational therapy or placebo after a trial has been completed by everyone participating. Typically you will not know until the data is analyzed or already underway. Some companies do not share this information until after they talk about the results to the FDA in case there are follow-up questions that need to be addressed. If you choose to participate in an open-label extension, you may not know if you had active treatment or placebo during the active portion of the trial. Participating in an OLE though will contribute valuable data about the investigational therapy.

Randomization is the process of assigning participants by chance to groups that receive different treatments. A 1:1 ratio means for every participant who receives the investigational therapy, one will receive the control treatment. A 2:1 ratio means for every two participants who receive the investigational therapy, one participant will receive the control treatment. The control treatment is typically the standard of care and a placebo.

It is important for you or your caregiver to be proactive and be your best advocate in finding the appropriate trial for you.

NEALS has a clinical trials liaison and their contact information can be found here. 

The Healey Center for ALS offers coordination services to help you understand options that are available. Here is their link.

Clinical trials advance through four phases to test a treatment, find the appropriate dosage, look for side effects and evaluate short-term and long-term effects. If, after the first three phases, researchers find a drug or other intervention to be safe and effective, the FDA may approve it for clinical use and require that researchers continue to monitor its long-term effects.

A phase I trial tests an investigational therapy or product on a small group of people living with ALS, sometimes the trial includes healthy participants. There may be several small groups in the phase 1 trial, one group starts once the previous group finishes. This is also referred to as a learning phase as the goal is to judge the investigational therapy’s safety and side effects and to find the correct drug dosage. Researchers also look at pharmacokinetics (distribution, metabolism, excretion) and pharmacodynamics (effects and mechanism of action).

A phase 2 trial may enroll more people than a phase 1 and may also enroll participants in small groups like in a phase 1. While the emphasis in phase I is on safety, the emphasis in phase 2 is on the preliminary effectiveness of the investigational therapy and how it works biologically. Phase 2 trials continue to study safety, including short-term side effects, and may also investigate some measures of clinical efficacy as a secondary objective. Phase 2 can be a learning phase and begin a confirmatory phase as to whether the experimental treatment works.

A phase 3 trial gathers more information about safety and dosing but the emphasis is on clinical effectiveness. There are usually a larger group of participants. If the FDA thinks the trial shows statistically significant positive results, for example, at slowing ALS disease progression, then it will approve the experimental drug. Phase 3 is also referred to as a confirmatory phase. Does the experimental therapy work or not.

A phase 4 trial takes place after the FDA approves their use. An investigational therapy’s effectiveness and safety are monitored in large, diverse populations. Sometimes, the side effects of a drug may not become clear until more people have taken it over a longer period of time.

The research coordinator or research nurse at the trial site will walk you through the prescreening and screening process to determine your eligibility to participate in the trial based on the inclusion and exclusion criteria. If the contact information for the site is not listed, there should be contact information for the pharmaceutical company conducting the trial for you to reach out to. They will be able to provide you with contact information for sites enrolling in their trial and possibly sites that haven’t been activated yet and therefore aren’t on the list yet.

Exclusion criteria are characteristics that disqualify potential trial participants from being eligible for a clinical trial. In ALS, this may include medications, supplements or treatments that interfere with investigational medication being tested. Most trials allow a washout period before the trial begins.

If there is a long-term disability policy included in your insurance plan, we recommend pulling that out and reading it.

If you’re still working and have employer coverage, it’s important that you understand how your plan covers your care and treatment so you can make smart decisions regarding SSDI (Social Security disability benefits) and Medicare. Please talk to your HR rep at work for details.

You can also contact I AM ALS and an ALS Support Specialist may be able to help you with your insurance questions.

If you’re eligible for Medicare, an ALS diagnosis will allow you to apply for benefits regardless of age. Please note: The five-month waiting period still applies. Medicare.gov offers an  that may show you your eligibility and premium costs.

ALS is one of the few diseases that receives a presumptive 100% service-connected disability rating. If diagnosis was made by a civilian physician, you’ll need to make sure you’re enrolled in the Veterans Health Administration and apply for benefits with the Veterans Benefits AdministrationFile a claim at VA.gov OR contact your local VA office so they may help with your claims process.

The VA is a complex organization that can be challenging to navigate, and its processes can feel convoluted and overwhelming. We recommend having a Veterans Service Officer (VSO) of the Paralyzed Veterans of America (PVA) or Disabled American Veterans (DAV) represent you. PVA and DAV are extremely adept at the claims processes for vets with ALS and have exclusive knowledge of and access to the internal VA systems.

Please contact them here, and learn more here.

Please do not suppress your emotions or keep them to yourself. Not talking about your thoughts and emotions can lead to feeling isolated and also can take a toll on your physical health. Reach out for support, maybe even before you feel like you need it. Not sure how to get support? Contact our ALS Support Team to learn more about your options for professional counseling, peer support and support groups.

If you experience uncontrollable crying or laughing, you may have pseudobulbar affect. Talk to your health care team about your symptoms as soon as possible to discuss treatment options.

While an ALS diagnosis is something no one is ever prepared for, we want to remind you that your diagnosis does not and should not define who you are.

If you’re experiencing feelings of depression, including low mood, loss of interest and enjoyment, sleep and appetite changes, poor concentration, and reduced energy, please contact your health care team. There are mental health providers with experience working with people with ALS who are ready to help. You also can contact our ALS Support Team for support with your emotional and mental health.

Studies have shown that people with ALS who have clinical depression fare so much better when their depression is treated. Please do not suffer alone — there is help. You’ve got this, friend.

As with any family “secret,” children may notice something has changed and, if not informed about your diagnosis, may feel guilty and fearful. Tell the truth in age-appropriate language. Wonders & Worries can be a wonderful resource for figuring out how to have this discussion.

You can choose to speak with a licensed counselor or an I AM ALS peer mentor for one-on-one support, or you can choose to participate in a support group. Your clinic may have a licensed social worker or counselor who you can discuss this with. There also are numerous support groups available for people living with ALS and caregivers, whether in-person or online.

Contact our ALS Support Team to learn which resources are available for caregivers, or explore caregiving resources here.

In addition, the VA provides social workers and direct support to both veterans and spouses. You can learn more here.

If you have foot drop, doctors can help you learn how to combat it so you don’t fall.

People generously donate the equipment they no longer need to loaner closets (often managed by The ALS Association or Muscular Dystrophy Association chapters) so that someone else can use it without having to purchase a new one. It’s a wonderful resource that can help you try things or save you major expenses.

The size and weight of hospital beds can be a problem in some homes. To address this, some manufacturers like Hillrom are producing hospital-quality beds that work in homes. A hospital bed also allows space for a lift to slide under — an important consideration if you’re looking at consumer adjustable beds.

Air mattresses or memory foam mattresses are generally most comfortable, with a lateral rotation air mattress being best.

Most beds are similar to a twin bed in size and can be placed alongside a spouse’s bed.

Stay clear of static, non-adjustable beds. people living with ALSs lose the ability to adjust their position in bed and to avoid bed sores they must be frequently moved, either by the caregiver or by lateral rotation.

Not sure what sort of bed to purchase? Ask your health care team what they recommend and discuss with other people living with ALS and caregivers to learn what’s worked for others.

Veterans are eligible for several remodeling grants. Learn more here.

Yes! Your SLP may be able to provide recommendations on specific Apps to try. Many Apps may be available to try for free before you purchase them. Some popular and low-cost text-to-speech Apps include Speech Assistant AAC and Text to Speech. Be aware that some Apps may not work with message and voice banking files. Team Gleason may be able to help with an App like Predictable, which is compatible with most message and voice banking files. Please know this list of Apps is non-exhaustive and there may be other Apps that work well for you. It’s recommended that you explore Apps with a SLP knowledgeable with AAC prior to purchasing an App.

We’re lucky to know a few amazing organizations that can help. Bridging Voice or Team Gleason may be able to help with this. You can also check with your ALS Association Chapter to see if they have a SLP who could help you.