Frequently Asked Questions About ALS
Greg Kenoyer battled ALS for 7 years. He was one of the most knowledgeable advocates in our community and championed this effort. In his honor, we want to share with you what he once shared with us:
“The darkness of our diagnosis is lessened by the light of knowledge. For the last several years my mission has been to share the knowledge I’ve gained to educate, support, and give a bit of hope back to my peers. As part of this mission I was honored and eager to assist in compiling and editing these FAQs. Please use them; please share widely. And please let us know what we missed. We, I AM ALS, need your help to make these FAQs the best resource available!” – Greg Kenoyer (Someone we’ve lost to ALS and incredible advocate)
Education about ALS
- I was just diagnosed. What do I do?
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.
- What are the symptoms of ALS?
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.
- Are there different kinds of ALS?
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.
- Is there a cure for ALS?
That is what is so cruel about this disease: at this time, there are no cures for ALS. There are some treatments that are believed to slow progression, but no treatment is currently able to stop or reverse progression. However, one of I AM ALS’ unwavering missions is to make these vital drugs and treatments available to patients living with the disease today. Read more about the treatments and trials available to people living with ALS.
- Is there a gene responsible for ALS?
Good question! Familial ALS accounts for 5%–10% of ALS cases, while the remaining 90–95% have no known genetic cause.
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.
- Is there any pain with ALS?
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 patients 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.
- What are the top misconceptions about ALS?
Since ALS is a mystery illness, many folks are completely unfamiliar with the disease. They may have a lot of misconceptions.
Here are a couple of 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).
- How has ALS treatment evolved over the years?
Over the past 20 years, knowledge and care of ALS patients has improved significantly! 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 patient with ALS using eye gaze only. How incredible is that?
- What are the most commonly misdiagnosed ALS-like diseases?
There are numerous motor neuron diseases besides ALS.
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).
- What are the secondary health issues/concerns that arise from ALS?
This answer is complicated (you’ll hear that a lot with ALS), and it’s an excellent reason to have a multidisciplinary clinic team helping you.
Depending on the degree of impairment, ALS patients are prone to issues ranging from constipation to yeast infections to dental care. Falling and subsequent injuries are common. With our breathing muscles compromised, we’re at risk of pneumonia, which can be fatal. Make sure to talk to your health care team about which secondary health issues you should be aware of.
- There are so many new terms and acronyms. Is there a list of explanations?
We’re glad you asked. We have a helpful list of acronyms here.
- Should I avoid sick people?
The short answer is yes. ALS patients’ 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.
ALS Treatment and Care
- Are there ALS specific therapists?
Yes. The ALS Association designated Centers of Excellence, Muscular Dystrophy Association-sponsored clinics, and The Les Turner ALS Foundation provide specific information regarding specialists throughout the country. You can find an ALS clinic near you here or contact your nearest medical center’s department of neurology. You can also contact I AM ALS Navigation for assistance or visit our website for more information.
- Are there any treatments for ALS?
While there are currently no cures for ALS, there are a few treatments and medications that can be used to help combat ALS and its symptoms.
Every ALS patient 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.
- What is the ALSFRS-R?
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.
- What is ROADS?
ROADS (Rasch-Built Overall ALS Disability Scale) is a relatively new mathematically derived self-reported disability scale that may become a useful approach in ALS clinical trials. It appears to be more sensitive than ALSFRS-R in measuring changes in function.
ROADS includes 28 daily activity questions such as “Can you blow out a candle?” or “Can you roll over in bed?” The patient 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.
- What happens in an ALS clinic?
Many ALS clinics use a multidisciplinary team approach to manage your care. Many specialists are present and will meet with you and your caregiver(s) individually. The team members typically coordinate your care under the direction of a neurologist experienced in ALS.
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.
- Can other illnesses/medications affect ALS?
Good question. Your neurologist will complete a thorough review of your medical history, current and past, as well as all medications. Chronic illnesses such as chronic obstructive pulmonary disease (COPD) may have an impact on your breathing. In addition, acute illnesses that occur, such as viral syndromes, may cause fatigue. Certain medications can cause fatigue and weakness, especially in patients with neuromuscular disease (for example, the antibiotic ciprofloxacin). Whatever illnesses you have or new medications you are considering should be discussed with your ALS care team to learn about any potential risks.
- Should I exercise? Or save my energy?
Exercising can be great, but there’s a lot of debate about working out when you have ALS. The answer depends on whether you worked out before your diagnosis or not. It’s truly best to discuss exercising with your doctor. There has been some interesting research on this topic that you can find here.
- Should I stop drinking alcohol?
Alcohol can sometimes cause liver damage, as can Riluzole. Alcohol can also temporarily impair speech and motor function. People with ALS may notice that their speaking and coordination get temporarily worse when consuming alcohol. Excessive alcohol (more than 2 drinks in a day) use should be avoided in people taking Riluzole. Please discuss whether it is safe to consume alcohol with your doctor, especially if you are on Riluzole to try and minimize the risk to the liver.
- Should I change my diet?
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.
- Should I get oxygen?
Great question. This is a question you should discuss with your health care team.
- When should I consider a non-invasive positive pressure ventilation (NIPPV)?
People with ALS frequently don’t recognize the weakness in their diaphragm, the primary muscle for breathing. The symptoms may be subtle, such as difficulty taking a deep breath when lying flat, feeling groggy, having headaches upon awakening and less breath to finish sentences.
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 more here.
- What is a tracheostomy?
“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.
- How do I determine whether I should get a tracheostomy or not?
Getting a trach is one of the most difficult questions ALS patients face. On the one hand, it can prolong life. On the other hand, the cost and impact of care are significant. Whether it is right for you is a question only you and your doctors can decide. Learn more through this NEALS webinar or this guide, and consider reflecting on your personal values before making this decision.
- Can you speak if you have a tracheostomy?
This is a question to ask your doctors. It depends on how much air is allowed to “escape” through your vocal chords during mechanical ventilation. Some patients with ALS can speak with their trach, but we aren’t able to say how many actually can.
- What are the different types of feeding tubes?
The operations used to place G-tubes are:
- 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:
- 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.
- 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.
- When should I get a feeding tube (G-Tube)?
This is a personal decision that only you can decide, with support from your loved ones and your health care team.
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 ALS patients 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 patients choose to forego a feeding tube — this is entirely your choice.
- When should hospice be called?
When you choose to end mechanical or invasive life-prolonging measures, hospice care should be considered. The hospice team develops an individualized plan of care to meet your needs for pain management and symptom relief, as well as emotional and spiritual needs. In addition, members of the hospice team can assist caregivers within the home. Often the team neurologist will suggest contacting hospice to discuss the many services provided.
Familiarize yourself with Medicare hospice benefits so you can make an informed decision when the time comes. Many patients 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.
- Does marijuana help with ALS symptoms?
Cannabis/Marijuana is associated with anecdotal improvements in ALS symptoms including pain, cramps, anxiety, insomnia, excessive secretions and poor appetite. Some of these benefits have been confirmed in small studies in patients with other diseases such as cancer, MS and spinal cord injury.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.
- What is a clinical trial?
You’ve probably heard a lot about clinical trials. They’re research studies with volunteer participants. They are designed to answer specific scientific questions. Those answers would help find better ways to prevent, detect or treat ALS, or to improve quality of life and care for people with ALS.
Experimental drugs, drug combinations and therapies are given to a group of patients who meet trial-specific criteria. Common criteria include time since diagnosis, breathing ability, participation in other trials and more.
If you’re interested in participating in a clinical trial, please know that the vast number of trials exclude patients who have had ALS more than a few years or require breathing assistance. In other words: Begin your research ASAP. I AM ALS offers a handy dashboard that shows active and upcoming clinical trials around the world.
- Should I sign up for a clinical trial?
Absolutely. By participating in a clinical trial, you’ll be helping all ALS patients and hopefully yourself.
Approach clinical trials with an open mind and realistic expectations. They’re designed to test specific aims related to the detection, prevention and management of ALS with an experimental drug, drug combo or treatment. While the researchers will be thrilled if it does help you, curing you may not be the primary goal. Most current trials include a significant placebo group, so it’s possible you’ll not receive the drug being tested.
Start by exploring clinical trials currently recruiting. I AM ALS has a handy list of current and upcoming trials. You also can find information at www.clinicaltrials.gov. Pay particular attention to eligibility and discuss your interest with our health care team. In addition, support group members may have experience with particular clinical trials and provide their experiences. Not sure where to start learning about clinical trials or what’s available? Contact I AM ALS Navigation for help.
- How much does ALS cost?
Unfortunately, like many chronic diseases, ALS can be expensive. Some common expenses include caregiving, transportation, medications, paying for conveniences, handicap remodeling and more. The good news is there are many resources available to help you with some of the costs. I AM ALS Navigation can assist you in understanding which resources are available to you. And it’s free. Contact us here or explore resources here.
- How can I receive financial assistance?
There are a number of organizations, beyond state and federal governments, that can help alleviate the financial burdens caused by ALS. We offer a helpful list of organizations here, or contact our Navigation team to learn more.
- What does insurance cover?
Sigh … insurance can be so complicated. Medicare is often the common denominator for people with ALS, so it pays to find out as much as possible about your Medicare coverage. You can call 1-844-244-1306 to talk to a case manager at the ALS Medicare Resource Line.
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 a Navigator may be able to help you with your insurance questions.
- Can I apply for Medicare?
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 Eligibility & Premium Calculator that may show you your eligibility and premium costs.
- Am I eligible for disability? Can I apply for Medicare and Social Security benefits, regardless of my age?
Once you’ve confirmed a diagnosis of ALS and have made the decision to stop working, you should promptly file an application for Social Security Disability Insurance. The easiest way to apply is here. Apply early because Social Security will not award monetary benefits for several months, even after being awarded disability status. Social Security may code ALS as Lou Gehrig’s Disease; therefore, when applying, you need to be sure to reference Lou Gehrig’s Disease.
I AM ALS is encouraging members of Congress to support a bill eliminating the five-month SSDI waiting period for ALS patients. You can learn more here and apply for disability here.
- I am a veteran diagnosed with ALS. How do I apply for benefits?
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 Administration. Then schedule an appointment with your VA health care team, submit copies of medical records reflecting diagnosis and ask about connecting with a VA ALS clinic or a VA neurologist who specializes in ALS. This will start the medical process. At the same time, you can start the claims process for benefits. File 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.
- My emotions are all over the place. Is this normal?
Fear, anger, shock, confusion, denial — everything you’re feeling is normal. An ALS diagnosis is devastating and brings incredible loss. You and your loved ones may start to experience different levels of grief or anticipatory grief, which is grief related to expecting loss that has not yet occurred.
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 I AM ALS Navigation 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.
- How do I know if or when I need help?
Hearing the words “You have ALS” can be devastating. It’s not uncommon to feel sad, hopeless or depressed, and it may take some time for you to absorb the information. This is completely normal.
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 I AM ALS Navigation 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.
- How do I tell my children about my ALS diagnosis? What do I tell my family? What do I tell my friends? What do I tell my coworkers?
There is no right or wrong way to share the news of your diagnosis. People respond in their own ways as well — any reaction is normal. Often people do not know how to respond or are uncomfortable. Family and close friends may want to know about your diagnosis, and when you tell them is your decision. Being honest and open is key. Read more on sharing your diagnosis here.
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.
- What support groups should I join?
Meeting people who are going through the same experience as you is incredibly important for your emotional well being. Joining a support group can remind you that you are not alone in your ALS journey. Whether you’re a patient, caregiver or child of an ALS patient, there are communities of individuals who want to support you and provide insight, resources and guidance. Contact I AM ALS Navigation to learn more about support groups in your area, or head here to learn more.
- What services and support are there for caregivers?
Being a caregiver for a person with ALS can be physically and emotionally trying. If you are a caregiver, we want you to know you’re not alone. We have a variety of resources to help you with your physical, emotional and financial well being.
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 patients and caregivers, whether in-person or online.
In addition, the VA provides social workers and direct support to both veterans and spouses. You can learn more here.
- What foundations might help me?
There are numerous ALS foundations, like I AM ALS, that are standing by ready to help you and your loved ones. You can view a list here. I AM ALS Navigation can help by supporting you emotionally, connecting you with essential resources, sharing relevant medical and research information and helping you build a community of ALS support.
- Do I need a foot brace (AFOs)?
An ankle foot orthotic (AFO) helps compensate for foot drop and can make walking significantly easier and less prone to tripping.
If you have foot drop, doctors can help you learn how to combat it so you don’t fall.
- What is voice banking? When should I begin saving my voice?
Great question. Voice banking is the process of recording your voice and having it processed to use on a text-to-speech app, a computer or an AAC (augmented and alternative communications) device.
It can be as simple as recording and storing specific phrases (“Hi! My name is Greg”) or as complex as an entire synthetic voice.
If you’ve been recently diagnosed, you should consider voice banking immediately and doing a few recordings each day. To obtain a high-quality synthetic voice, there are a significant number of words and phrases to record.
To get started with voice banking, visit the Team Gleason website here.
- What is eye gaze technology?
Eye gaze is truly remarkable. It’s a form of technology that allows you to control a computer, tablet or AAC (augmented and alternative communications) device simply by gazing at the screen. An infrared camera invisibly tracks your eye movements and translates that to a screen location. How cool is that?!
Think of it as a touch screen for your eyes.
These FAQs were written and edited using eye gaze.
You can read more about eye gaze technology here. Connect with a speech language pathologist or therapist to learn more about whether eye gaze may be appropriate for you.
- What is a loaner closet?
ALS is a demanding disease when it comes to equipment.
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.
- What kind of bed and/or mattress should I get?
Getting a comfortable bed and a good night of sleep is super important. A quality hospital bed (frame or frame/mattress combo) that raises and lowers your head, feet and the entire bed is recommended for both patient care and ease of use for the caregivers.
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. ALS patients 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 patients and caregivers to learn what’s worked for others.
- How do I go about making house modifications?
Great question. There are a number of resources available to you. The local ALS Association and Muscular Dystrophy Association chapters may know contractors in the area who can help you modify your house. Similarly, the organizations listed on our Discover ALS Resources are great connectors to contractors and the modifications needed to make a house liveable for someone with ALS. Your ALS Guide and ALS From Both Sides are helpful sources on home modifications.
Veterans are eligible for several remodeling grants. Learn more here.
- Can I fly?
Per the CDC’s guidelines, please avoid all non-essential travel during the COVID-19 pandemic as travel increases your risk of getting and spreading COVID-19. Learn more about the guidelines here.
For those with high breathing scores and/or no movement impairment, fly on, but always take precautions. However, if you’re further along in your ALS journey and have to travel with a wheelchair or are vented, it’s important to work with your doctor to make sure you are okay to fly, and the airport and airline to make travel as simple as possible.
If you get the green light to travel from your doctor, call ahead to the airport and airline to clear up any questions and ask about the specific airport, TSA or airline procedures and requirements. The more you know and plan ahead, the better your trip will be. Bon voyage!
- Can I ride a train?
Per the CDC’s guidelines, please avoid all non-essential travel during the COVID-19 pandemic as travel increases your risk of getting and spreading COVID-19. Learn more about the guidelines here.
Yes, the train is a wonderful way to travel, and both U.S. and Canadian railways have handicapped accommodations; however, please note there are neither hoists (hoyer lifts) nor room to use one even in the handicapped rooms.
If your train travels involve high altitudes and you have trouble breathing, make sure to discuss with your doctor before traveling. More information on making Amtrak reservations is available here and accessible services here.
- What are the questions I should ask hotels or stores about ALS-related handicap accomodations?
When it comes to hotels, accessible is a word without real meaning. Some hotels consider a wide door and a grab bar to be handicapped accessible.
Know what you need (a roll-in shower, x feet around the bed, raised commode, etc.) and contact the hotel directly to make sure they assign you to a room that accommodates your needs. Most hotels are great about being helpful. Need help knowing what to ask? Contact I AM ALS Navigation and we’ll get you the information you need.
For things to consider when staying with a friend, read this helpful blog post.
You might find these helpful:
Caregivers – Start Here
This page from I AM ALS shares helpful information on what to do when you're first diagnosed with ALS.
Starting the Hard Conversations Around ALS
This video from I AM ALS founders Sandra and Brian explores the importance of addressing tough questions about ALS.