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Frequently Asked Questions

"The darkness of our diagnosis is lessened by the light of knowledge."

  • Greg Kenoyer battled ALS for 7 years. He was one of the most knowledgable 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 (pALS and advocate)

I was just diagnosed with ALS, what do I do?

Education About ALS

1. I was just diagnosed, what do I do?

Start by reading this.

2. Are there different kinds of ALS?                

Yes.

ALS is classed as familial ALS (fALS) or hereditary if there is a close family history of ALS or similar disorders (Alzheimer's, etc) or if genetic testing reveals one of approximately 25 ALS-associated genes. In the case that there are no ALS genes present or family history, it is classified as sporadic ALS.

Within these two types of ALS, there are subtypes, for example, some familial ALS is caused by the SOD1 gene while others by the C9 gene. In addition, scientists now believe there may be a number of different sporadic phenotypes.

ALS is the most common type of Motor Neuron Disease (MND). 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 that 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 in each case--and typically is different. Thus, everyone's ALS journey will be unique. This means that it is incumbent on us to educate ourselves and take steps, with our doctors, to develop the best quality of life possible for us and our families.

3. What is bulbar onset ALS?

Bulbar onset ALS occurs when motor neurons in the brainstem (bulbar area) are affected first. Symptoms start in the face, mouth, throat, or tongue. A common early symptom is a change in speech or singing ability. Bulbar onset is less common than limb onset.

4. What is limb onset ALS?

Limb onset occurs when motor neurons in the spinal cord (vs. brainstem) are affected first -arms, legs, hands, or feet.

One of the first symptoms of limb onset (in the leg, for example) could be unexplained tripping or foot-drop. Limb onset is the most common type of ALS.

5. How is ALS different than Lyme Disease?

For a discussion on this question, please click here to read this ALS Untangled review.

6. Is there a gene responsible for ALS?

Familial or Hereditary ALS accounts for from 5% to 10% of ALS cases. The bulk, 90-95%, of cases have no known (or possibly, not yet known) genetic cause.

The discovery of genes related to ALS has exploded in the past 10 years. There are over 30 genes implicated as risk factors for ALS. How these genes may interact with the environment is under study. This shows us how complicated the problem is, but it also gives us several potential targets for therapies that will focus on ALS.

7. Is ALS what Stephen Hawking had?

Yes. Stephen Hawking was diagnosed in 1963 with an early-onset, slow-progressing form of motor neuron disease (MND). ALS has been most commonly cited as the cause of his death. There are multiple classifications of MND to include whether they are inherited, sporadic, upper motor neurons, lower motor neurons, or both. In adults the most common form is ALS. Read more here.

8. Is there a cure for ALS?

There is no cure for ALS. There are some treatments that are believed to slow progression, but no treatment is able to stop or reverse progression. One of I AM ALS’ missions to make these drugs and treatments available to patients living with the disease today.

9. Why isn't there a cure?

It's complicated (you'll hear this a lot in ALS). As more and more genes are implicated, we realize that ALS is a lot more complicated than we ever guessed. It's highly heterogeneous, meaning diverse and different. Some researchers suspect that ALS isn't a single disease but several different diseases with similar symptoms.

10. Is ALS always fatal?

Yes, but with modern technology and improved support for symptoms, people with ALS are often living well beyond the "two to five years" that doctors used to quote. Dr. Stephen Hawking is probably the most famous example: he lived for 50+ years following his diagnosis, a full life for anyone.

Additionally, several experimental drugs and treatments have beat the disease back significantly in some ALS patients. One of I AM ALS’ missions is to get these drugs and treatments into patients living with the disease today.

11. What are the symptoms of ALS?

This will vary by individual and with the type of onset. Some people have weakness in muscles of the legs or arms, or unexplained tripping (limb onset); others have difficulty swallowing, speaking or singing (bulbar onset). Some people have a very slow progression spanning over a decade or more, while others will experience rapid progression over several months.

There is no way to predict how an individual's ALS will progress and whether progression will be consistent. This is among the reasons for continued assessments by the neurologist and care team.

It is important to remember that ALS symptoms do not begin all at once or suddenly. Symptoms may be subtle, e.g., difficulty climbing stairs, walking, lifting items or writing/typing, feeding ourselves or swallowing liquids; or experiencing shortness of breath, speech changes, trouble with decision-making, or uncontrolled crying or laughing.

12. Is there any pain with ALS?

Studies suggest that 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. If we are experiencing pain, it is recommended that we raise this with our doctors to see if there is any appropriate treatment.

13. Is ALS contagious?

No, ALS is not contagious.

While the underlying cause or causes of ALS remain a mystery, it has been studied since 1894 and no instance of contagion has ever been observed.

14. Should I avoid sick people?

As ALS patients our bodies are weakened and thus more susceptible to disease. It also takes longer to recover from illness, as our bodies are constantly stressed from fighting ALS and have scant reserves.

Thus, if we live or work in an environment that brings us into contact regularly with those who are sick, we need to discuss this with our doctors.

15. Should I change my diet?

Studies have shown that a high calorie, high carb diet actually is beneficial for ALS. This of course does not mean that we should adopt an ice cream and cake diet: eat healthy but do not skimp the calories.

If our neurologist has not connected us with a nutritionist, we should ask that they do so.

16. What is the ALSFRS-R?

The ALS Functional Rating Scale (revised) is used in the ALS clinic to monitor our function and how ALS is affecting our body.

It is a questionnaire-based scale (you can access this scale online) that measures and tracks the changes in physical function over time. It is 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 speed of progression.

As this is an inexact and subjective test, its use in clinical trials is becoming controversial. Biomarkers (quantitative, measurable physical attributes) are preferred and will become more common in the coming years.

17. How has ALS treatment evolved over the years?

Knowledge and care of patients with ALS has improved significantly over the past two decades. Consider that until recently the only medication specifically for ALS was riluzole; now there is also edaravone. And there are several promising treatments in clinical trials. Improving clinical trials for ALS is a focus of I AM ALS.

In addition, the technology supporting ALS patients 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. Communications hardware and software are permitting people with ALS to interact and contribute to conversations and to continue to work. The FAQs which you're currently reading were created by a 95% paralyzed ALS patient using eye gaze only.

18. What happens in an ALS clinic?

An ALS Clinic uses a team approach to manage our care. Many specialists are present and will meet with you and your caregiver(s) individually. The team members coordinate our care under the direction of a neurologist experienced in ALS.

Team members may include a respiratory therapist or pulmonologist, nurse or nurse practitioner, physical therapist, occupational therapist, speech-language pathologist, dietitian, social worker, mental health professional, and a liaison from the ALS or MDA association.

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

Remember, WE are the most important members of the team.

19. What is a clinical trial?

Clinical trials are research studies with volunteer participants designed to answer specific scientific questions to 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.

The vast number of trials exclude patients who have had ALS more than a few years or require breathing assistance, so begin your research early.

20. What is eye gaze technology?

Eye gaze is a technology that allows us to control a PC or AAC (Augmented and Alternative Communications) device simply by gazing at the screen. An infrared camera invisibly  tracks our eye movements and translates that to a screen location.

Think of it as a touch-screen for our eyes.

These FAQs were written and edited using eye gaze.

Read more about eye gaze technology here.

21. What is voice banking? When should I begin saving my voice?

Voice banking is the process of recording our voice and having it processed to use on a text-to-speech app, a PC 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.

We should consider beginning  voice banking immediately. To obtain a high-quality synthetic voice there are a significant number of words and phrases to record; we should start early and do a few recordings a day.

To get started go to the Team Gleason website here.

22. What services and support are there for caregivers?

See resources page here.

23. What support groups should I join?

See resources page here.

24. What are the top misconceptions about ALS?

ALS remains a mystery illness, so misconceptions are rare - complete ignorance is more common.

But there are a few misconceptions, the truth of which is that:

  • ALS is not Lyme disease.
  • ALS affects all age groups, including teenagers, both sexes and all races/ethnicities.

25. What are the most commonly misdiagnosed ALS-like diseases?

There are numerous motor neuron diseases other than ALS in the differential diagnosis.

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).

26. So many new terms and acronyms, is there a list of explanations?

Please refer to this document.

Financial Coverage

1. How much does ALS cost?

Between treatments and technology, ALS can be expensive. Most people find that there are a lot of expenses that never make it to the studies, and it takes some good planning to make the most efficient use of our resources and to find every new resource to which we are entitled.

Family caregiving, transportation, paying for conveniences, handicap remodeling, etc. will affect our budgets. But there are organizations and support resources which can assist us to make the best decisions for our unique situation.

See our resources page here.

2. How do we get financial assistance?

There are a number of organizations, beyond state and federal governments, that can help alleviate the financial burdens caused by ALS. For a partial, and ever-growing list go here.

3. What does insurance cover?

It's complicated and it varies. Medicare is often the common denominator for people with ALS, so it pays to find out as much as possible about our Medicare coverage.

If there is a long-term disability policy included in your plan, it's time to get that out and read it.

If we are still working and have employer coverage, we need to understand how it covers things so that we can make smart decisions related to SSDI (disability benefits) and Medicare.

4. Can I apply for Medicare?

If we are eligible for Medicare an ALS diagnosis will allow us to apply for benefits regardless of age. Note that the five-month waiting period still applies.

5. Am I eligible for disability? Can I apply for Medicare and Social Security benefits, regardless of our age?

Once we have a confirmed diagnosis of ALS and have made the decision to stop working, we should promptly file an application for Social Security Disability Insurance. The easiest way to apply is online 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, we need to be sure to reference ‘Lou Gehrig’s Disease’.

I AM ALS is encouraging our members of Congress to support a bill eliminating the 5-month SSDI waiting period for ALS patients. You can read more here and apply here.

6. I am a veteran diagnosed with ALS, how do I apply for benefits?

ALS is one of the few diseases that receive a presumptive 100% service-connected disability rating. If diagnosis was made by a civilian physician we will need to schedule an appointment and submit copies of medical records reflecting diagnosis. This will start the medical process. At the same time we can start the claim process for benefits. All US states have a Veterans commission or assistance department that can assist with the claims process.

The VA is a complex organization that can feel hard to navigate and its processes can feel convoluted so we recommend having a Veterans Service Officer (VSO) of the Paralyzed Veterans of America (PVA) or Disabled American Veterans (DAV) represent us. 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.

Contact them here and find out more here.

ALS Treatment and Care

1. Do I really have ALS?

There is no definitive test for the diagnosis of ALS. The diagnosis is a process of clinical investigations to exclude other causes of the symptoms.

The ultimate diagnosis will be made by a neurologist who will look for a unique set of changes and impairments that only come together in ALS patients. This can include progressive weakness spreading from region to region such as bulbar region (speech/swallowing), cervical regions (upper limbs), thoracic regions (chest & abdominal muscles), or lumbar regions (lower limbs), involvement of both the upper & lower motor neuron (i.e.,  entire body not just legs or arms, and other physical changes such as stiffness, twitching, etc.

Remember, ALS can and does present differently in different people. Some progress quickly, others slowly. Some start with speech issues, others with leg weakness. Our neurologist and multidisciplinary team will continue to assess our status at scheduled visits, generally every three months at the onset.

2. Are there ALS specific therapists?

Yes. ALS Association designated Centers of Excellence, MDA sponsored Clinics, and Les Turner ALS Foundation provides specific information regarding specialists throughout the country. In addition, contact your nearest medical center, department of neurology. More resources here.

3. Are there any treatments for ALS?

At this time, there is no cure for ALS. There are, however, a few treatments and medications that can be used to help combat ALS and/or its symptoms.

Every ALS patient progresses differently we need to discuss our symptoms with our doctors to figure out which, if any, treatments and medications might be right for us. For more information visit here.

And one final note, many will go online to research treatments. We need to exercise care when we see treatments that claim to cure ALS. Before taking any, it is always a good idea to discuss with our doctors to see if the claims are real and/or if there are any risks that we should be aware of.

4. Is there support for the mental/emotional side of ALS: caregivers included?

There is support for both patients and caregivers.

There are numerous caregiver support groups. There are also online support groups, some dedicated to caregivers and some as a separate category under ALS support.

See our resources page here.

The VA provides social workers and direct support to both veterans and spouses, more here.

5. How do I know if I'm depressed enough to need help?

Feeling sad, hopeless, or depressed are common emotions in people diagnosed with ALS. It takes time to adjust and begin to absorb the information.

While an ALS diagnosis is something no one is ever prepared for, we all try to remain hopeful; we are living with ALS and your illness does not and should not define who we are.

That said if we are experiencing feelings of depression, including low mood, loss of interest and enjoyment, sleep and appetite changes, poor concentration, and reduced energy persist, we should  contact our healthcare provider (primary care provider and/or neurologist). There are mental health providers/counselors who have experience working with persons who have ALS.

Studies have shown that people with ALS with clinical depression do so much better when the depression is treated. That doesn't sound like rocket science, but sometimes we overlook other conditions and blame everything on ALS.

6. Should I exercise? Or save my energy?

This is a question of great debate within the ALS world. A lot of the answer depends on whether we worked out before your diagnosis or not. Thus, it is best to discuss with the doctor. There have been a few recent studies on this question so make sure they and we have read them. Read more here.

7. Should I stop drinking alcohol?

ALS does not require you to change your lifestyle. If we drank prior to your diagnosis, there's nothing to stop us from drinking after it.

Some of us even partake via our feeding tubes!

8. What are the secondary health issues/concerns that arise from ALS?

It's complicated (you'll hear that a lot with ALS), and it's an excellent reason to have a multi-disciplinary clinic team helping us.

Depending on the degree of impairment, we're prone to issues ranging from constipation to yeast infections, to dental care. Falling and the resultant injuries are common. With our breathing muscles compromised we are at risk of pneumonia, which can easily be fatal. There are tips and tricks that can help many of them from becoming issues.

9. What do other illnesses/medications that I have affect ALS?

A neurologist will complete a thorough review of your history, current and past, as well as all medications. Chronic illnesses such as COPD will have an impact on our breathing. In addition, acute illnesses that occur, e.g., viral syndromes, will add to fatigue. We should always share information between a neurologist and primary care health care provider.

10. 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 we have foot drop, doctors can help us learn how to combat it. It is important to avoid falling when battling ALS.

11. What type of emotions might I expect?

An ALS diagnosis is an extreme emotional blow. We should be prepared to go through the stages of grief.

We do NOT hesitate to reach out for support, be it online, at a support group meeting or from professionals. This is a serious disease and we'll need serious support.

Expect emotional lability ranging from simple "crying at the tragic movie scene" to uncontrollable crying or laughing. The latter is called PBA (pseudobulbar affect).

Emotional liability can be controlled by the drug Nuedexta, ask our clinic.

12. 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 or having headaches upon awakening; less breath to finish sentences.

Commonly, the pulmonologist, respiratory therapist, or neurologist will discuss the use of the NIPPV, which may be offered in different forms (Bilevel Positive Airway Pressure (BiPAP), Trilogy, AVAPS) when  FVC (breathing test conducted in clinic) is <50% of predicted or when negative inspiratory force (NIF or force generated while sucking in) is abnormal. This noninvasive ventilation is normally used at night in the beginning and then may be used up to 24 hours/day as the disease progresses.

When and whether to use NIPPV is something you should discuss with your doctor. We note that the use of noninvasive ventilation has been shown to have a positive impact on the quality of life and survival. Read more here.

13. When should I get a feeding tube (G-Tube)?

This a personal decision that only we, our family, and our doctor can decide.

Based on our experiences, we think it is appropriate to consider a feeding tube when we have difficulty swallowing/chewing food, have trouble maintaining weight, have difficulty staying hydrated, or our 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 sedation" for those of us with breathing impairment, there is a point at which any operation is too risky: we need to be proactive, get it done early. Many ALS patients receive their tubes while we can still eat and continue to enjoy "normal" food. We then begin to use their tubes gradually, possibly simply for extra hydration or to avoid swallowing pills.

Some ALS patients refuse a feeding tube because they don't wish to "artificially extend life"; this is entirely their choice. The operations used to place G-Tubes are:

  • PEG (Percutaneous Endoscopic Gastronomy) done under general anesthesia. The most common type.
  • RIG (Radiologically Inserted Gastronomy) done under ‘twilight sleep’ and/or local anesthesia. Used when breathing is an issue.
  • PIG (per-oral image guided gastronomy) 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 use an internal ‘balloon’. Just as the above, these balloons will eventually fail.

14. Should I get oxygen?

Great question. Whether we should is a question you should definitely discuss with your doctor.

15. What is a tracheostomy?

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 excellent resources to include webinars available through NEALS and the ALS Association.

16. How do I determine whether I should get a tracheostomy or not?

Whether to get a trach is one of the most difficult questions facing ALS patients. On the one hand, it can prolong life. On the other the cost and impact of care are significant. Whether it is right for each of us  is a question only we and our doctors can decide. Read more here.

17. Can you speak if you have a tracheostomy?

This is a question to ask our doctors. We have heard anecdotes about pALS who can speak but aren't able to say how many actually can.

18. Does marijuana help?

Anecdotal reports from many patients support the use of cannabis for symptom relief: pain, anxiety, insomnia, and spasticity. These reports have not yet been confirmed through published scientific research.

We should consult our doctor before deciding whether to use marijuana.

19. When should hospice be called?

When we choose no further mechanical or invasive life-prolonging measures (e.g. tracheotomy) hospice care should be considered. The hospice team develops a plan of care individualized to meet the person's 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.

The Medicare Hospice benefit is one that you should become familiar with so that you can make an informed decision when the time comes. Many with ALS have lived a long time while receiving Medicare Hospice benefits. Some with ALS opt for Hospice teams while we continue to use normal benefits and insurance and receive approved treatments. The word "hospice" has a benefit meaning and a care meaning and we need 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 or to have Radicava infusions.

We need to be very clear on the benefits and limitations of hospice before entering care.

Transportation Information

1. Can I fly?

For those with high breathing scores and/or no movement impairment, fly on. If, however, we are farther along in your fight and have to travel with a wheelchair or are vented, it's important to work with our doctor, the airport and airline to make sure we are okay to fly and to make travel as easy as possible.

If we get the green light to travel from your doctor, we should 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 we know and plan ahead, the better  our trip will be.

Helpful links:

  • https://wheelchairtravel.org/air-travel/
  • http://www.alsa.org/als-care/living-with-als/traveling-with-a-disability.html
  • https://alsadotorg.wordpress.com/2017/09/21/helpful-tips-for-traveling-with-als/
  • https://www.tsa.gov/travel/special-procedures

2. Can I ride a train?

Yes, both US and Canadian railways have handicapped accommodations BUT there are neither hoists (hoyer lifts) nor room to use one even in the handicapped rooms.

If our travels might involve high altitudes and we have trouble breathing, make sure to discuss with your doctor before traveling. There is more information on making reservations here and services here.

3. How do I go about making house modifications?

There are a number of resources available to us. The local ALS Association and MDA Chapters may know contractors in the area who can help. Similarly, the organizations listed on our encyclopedia page are great connectors to contractors and the modifications needed to make a house living for someone with ALS.

Veterans are eligible for several remodeling grants, more here.

4. What are the questions I should ask hotels or stores about ALS related handicap accommodations?

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 we need (a roll-in shower, x feet around the bed, raised commode, etc) and contact the hotel directly to make sure they assign us to a room that accommodates our needs. Most are great about being helpful and want our room to work for us. Just don't take "accessible" for granted.

For a discussion of what we need to consider for access, please review this document.

Advice From Those Who Been in Your Shoes

1. How do I tell my children about my diagnosis of ALS? 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. 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 will want to know about our diagnosis and when we tell them is our decision. Being honest and open is key. Read more here.

As with any family "secret", children will notice something has changed and, if not informed about your diagnosis, may feel guilty and fearful. Tell the truth in age-appropriate language. Hope Loves Company can be a wonderful resource for you in figuring out how to have this discussion. Read more here.

2. Should I sign up for a clinical trial?

Absolutely. We will be helping all ALS patients and may help ourselves.

But approach clinical trials with an open mind and realistic expectations. Clinical trials are designed to test specific aims related to the detection, prevention, management of ALS with an experimental drug, drug combo or treatment, not to cure *you*. The researchers will be thrilled if it does help us but that's not necessarily the goal. Most current trials include a significant placebo group, so it's possible we will not receive the drug being tested.

We can start by exploring clinical trials currently recruiting. Up-to-date information is found on www.clinicaltrials.gov. While this government site may be a bit daunting to navigate, the Northeast ALS Consortium (NEALS, www.alsconsortium.org) provides a simpler interface to clinical trials. Pay particular attention to "eligibility". We should discuss our interest with our neurologist/team. In addition, support group members (online and local) may have experience with particular clinical trials and provide their experiences.

3. Should I start a foundation or a GoFundMe page?

While not widespread, several ALS patients have established charitable foundations and/or have started GoFundMe pages.

Professional help is recommended due to the tax implications of either approach.

4. What are the best forums and message boards for ALS?

See our resources page here.

In addition, Hope Loves Company can be a wonderful resource for you in figuring out how to have a discussion with your family and kids about ALS. Read more here.

5. What Facebook groups are helpful for ALS caregivers?

See our resources page here.

6. What Facebook groups are helpful for ALS patients?

There are many helpful Facebook groups out there for ALS patients ranging from an ALS equipment exchange here to a page for pALS under the age of 50 here. For a longer list, see our resources page here.

7. What foundations might help me?

See our resources page here.

8. What is a loaner closet?

ALS is a demanding disease when it comes to equipment. The physical changes from progression guarantee that we'll hardly break in one piece of equipment before we are ready for the next.

People generously donate the equipment they no longer need to loaner closets (often managed by ALSA chapters) so that someone else can use it without having to purchase new. It's a wonderful resource that can help us try things or save you some major expenses.

Keep in mind that some things are pretty standard and make great loan material. Other things that are highly technical (including power wheelchairs and communications devices) require fitting and adjusting and software/firmware upgrades. One size never fits all with those and a loaner may or may not be the best choice.

9. What kind of bed and/or mattress should I get?

A good hospital bed (frame or frame/mattress combo) that raises and lowers 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 Hill-Rom 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.

We should avoid static, non-adjustable beds: ALS patients lose the ability to adjust their position in bed and to avoid pressure (bed) sores they must be frequently moved, either by the caregiver or by the lateral rotation.

We should ask our clinic what they recommend and discuss online to learn what's worked for others.

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