Do you have any questions?
Help & Support
We will be happy to help you personally – talk to us or send us an e-mail.
Support Center
ALS app
Responsible Felix Kolzarek
- ALS app: Register, sign up and log in
- How and why can a breathing effort be documented in the ALS app?
- How and why should a swallowing disorder be documented in the ALS app?
- How can the ALS app help with DMC treatment?
- How can the ALS app help with DMC treatment?
- How can the ALS app support the provision of aids?
- How can the ALS app support the treatment of sialorrhea?
- How can the data from the ALS app be used for research?
- How do I access the ALS app?
- How do the ALS care recommendations in the ALS app work?
- How does a fast or slow progression of the disease manifest itself?
- How does a fast or slow progression of the disease manifest itself?
- How does the medication supply via the ALS app work?
- How does the notification of a care requirement via the ALS app work?
- What are the benefits of the ALS app for patients?
- What is the ALS app?
- What is the progression value?
- What is the significance of the photo function in the ALS app?
- What is the significance of the scan function in the ALS app?
- What support can the ALS app provide in controlling body weight?
- Where can I find the ALS app?
- Who can register in the ALS app?
- Who can use the ALS app?
- Why and how should ventilation be documented in the ALS app?
ALS functional rating scale
Responsible Dr. Senthil Subramanian
- How long should the ALS function scale be collected in the ALS app?
- How often should the ALS function scale be collected in the ALS app?
- What are the benefits of the ALS Functional Scale for research?
- What are the benefits of the ALS Functional Scale from a physician's perspective?
- What are the benefits of the ALS Functional Scale from the patient's perspective?
- What does the ALS Functional Rating Scale (ALSFRS-R) mean?
- Where can I see my data from the ALS function scale?
ALS genetics
Responsible Peggy Schumann
- Are the costs of genetic diagnostics covered by health insurance?
- Can a genetic change be present even without a family history of ALS?
- Do I have the right to waive genetic information?
- How are the genetic findings communicated?
- How can I tell if I have a hereditary form of ALS?
- How long does the genetic diagnosis of SOD1 take?
- Is ALS hereditary?
- Is there a genetic test for ALS?
- Under what circumstances is a genetic diagnosis useful?
- What is "familial" ALS?
- What is “sporadic” ALS?
- What is an ALS gene panel?
- What is genetic counseling?
- What is genetic penetrance?
- What is hereditary ALS?
- What is meant by an asymptomatic gene carrier?
- What is the ALS genetics program?
- What is the difference between familial and genetic ALS?
- What is the significance of genetic diagnostics in ALS?
- What risk of ALS do my children have?
- What role will genetic therapy play in ALS in the future?
- What support options are available to asymptomatic ALS gene carriers?
- When is it advisable for relatives to seek genetic counseling?
- Which ALS genes should be analyzed?
- Why is the SOD1 gene of particular relevance in ALS?
ALS progression rate
Responsible Dr. Senthil Subramanian
- Can the ALS progression rate change during the course of ALS?
- Do I have a faster or slower progression of ALS?
- How can I find out my ALS progression rate?
- How can I use the ALS app to determine my ALS progression rate?
- What differences can there be in the ALS progression rate?
- What does ALS progression rate (progression value) mean?
- What is the significance of the ALS progression rate (ALSPR)?
ALS therapy
Responsible Dr. Dr. Susanne Spittel
- Does it make sense to take Riluzole if the disease progresses anyway?
- Does Riluzole have to be taken at specific times?
- For which patients is treatment with Tofersen available?
- How can a bladder disorder be treated?
- How can constipation be treated?
- How can I tell if Riluzole is working?
- How can the ALS app help with DMC treatment?
- How can the ALS app help with DMC treatment?
- How can the ALS app support the treatment of sialorrhea?
- How can the effectiveness of DMC in ALS be recorded and documented?
- How can the effectiveness of DMC in ALS be recorded and documented?
- How does botulinum toxin treatment for spasticity work?
- How is the drug DMC available?
- How is treatment with Tofersen administered?
- How many symptomatic ALS drugs are available?
- How should the Riluzole melting film be used?
- How should the Riluzole suspension be used?
- In what situations is oxygen therapy appropriate?
- In what situations is treatment with benzodiazepines appropriate?
- In what situations is treatment with morphine appropriate?
- In which situations is treatment with cannabis useful for ALS?
- Is botulinum toxin treatment painful?
- Is it permissible to refuse food or to discontinue nutritional therapy?
- Is taking creatine beneficial?
- Is taking vitamins (vitamin E, vitamin B12) beneficial?
- Should all patients with ALS be tested for mutations in the SOD1 gene?
- Should I participate in a clinical trial?
- What are antispasmodics?
- What are clinical trials?
- What are the side effects of antispasmodics?
- What are the special features of prescribing cannabis-containing medication for ALS?
- What do "Phase 1", "Phase 2" or "Phase 3" studies mean?
- What do “limiting therapy” and “discontinuing treatment” mean?
- What do the terms “double-blind” and “placebo-controlled” study mean?
- What does "health services research" mean?
- What does “double effect” mean in drug therapy?
- What does “off-label” medication mean?
- What does it mean to participate in a clinical trial?
- What does symptomatic pharmacotherapy mean?
- What dosage forms of Riluzole are available?
- What effect does the genetic drug Tofersen have on SOD1-ALS?
- What is a prescription drug?
- What is the correct dose of riluzole?
- What is the current state of basic research on ALS?
- What is the mechanism of action of riluzole?
- What is your experience with Tofersen?
- What other genetic therapies for ALS are in development?
- What pharmacological treatment options are available for dyspnea?
- What side effects of Riluzole are to be expected?
- What study data is available on the effect of DMC?
- What treatment options are available for ALS with speech impairment?
- What treatment options are available for anxiety and restlessness?
- What treatment options are available for depression?
- What treatment options are available for fasciculations?
- What treatment options are available for muscle cramps?
- What treatment options are available for pain?
- What treatment options are available for sleep disorders?
- What treatment options are available for spasticity?
- When can we expect an effective treatment for ALS—or even a cure?
- When is treatment with DMC useful for ALS?
- Where can I get the latest information on new developments in genetic therapy for ALS?
- Which medications are effective for salivation in ALS?
- Which medications are used for ALS?
APST
Responsible Barbara Hildebrandt
- What benefits does Ambulanzpartner offer for research?
- What benefits does Ambulanzpartner offer patients?
- What benefits does Ambulanzpartner offer the healthcare system?
- What does Ambulanzpartner do?
- What is the Ambulanzpartner care portal?
- What is the importance of "care management" for people with ALS?
Biomarkers
Responsible Peggy Schumann
- Are the NfL analyses in blood and cerebrospinal fluid equivalent?
- Are there fluctuations in NfL measurements in people with ALS?
- Can Neurofilament Light Chain (NfL) be used to diagnose ALS?
- Can the NfL test rule out the diagnosis of ALS?
- How is the NfL test available for people with ALS?
- How often should the NfL test be repeated in people with ALS?
- Is there a laboratory test for ALS?
- What are ALS biomarkers, and what significance do they have for research?
- What is the significance of the biomarker troponin T in ALS?
- What is the significance of the NfL-ALS study?
- What personal benefits can the NfL value provide in ALS?
- What significance does NfL have for the prognosis of ALS?
- Where are NfL values displayed in the ALS app?
- Where are NfL values displayed in the ALS app?
- Wie kann ich an Biomarker-Forschung teilnehmen?
Care management for assistive devices
Responsible Katja Werdermann
- Can wearing a brace lead to increased muscle loss?
- Does it make sense to add an electric drive to the folding wheelchair for ALS?
- Does using a wheelchair cause ALS to progress more rapidly?
- How successful is an objection to the provision of medical aids with health insurance companies?
- What are aids?
- What are the possible “side effects” of orthotics?
- What is a "movement trainer"?
- What is a cervical orthosis?
- What is a head, chin or eye control?
- What is a multifunctional wheelchair?
- What is a peroneal orthosis?
- What is a positioning orthosis?
- What is a power wheelchair with special functions?
- What is a power wheelchair?
- What is a transfer aid?
- What is a trunk orthosis?
- What is an active wheelchair?
- What is an arm robot?
- What is an eating robot?
- What is an electronic communication aid?
- What is an indoor power wheelchair?
- What is an orthosis?
- What is assistance technology?
- What is environment control?
- What is the difference between a push wheelchair and an active wheelchair?
- Why can it be useful for people with ALS to use several wheelchairs?
- Why is it advantageous to arrange for assistive devices through a specialized ALS center?
Care management for care services
Responsible Barbara Hildebrandt
Care management for medication
Responsible Dr. Dr. Susanne Spittel
- Can medication be administered via a PEG?
- How can Riluzole be administered via the PEG tube?
- How can the ALS Pharmacy Program support the supply of cannabis-containing medicines?
- How do ALS pharmacies contribute to research?
- How does the swallowing disorder progress in ALS?
- How many symptomatic ALS drugs are available?
- What are the special features of prescribing cannabis-containing medication for ALS?
- What does symptomatic pharmacotherapy for ALS mean?
- What is a prescription drug?
- What is an ALS pharmacy?
- What is the ALS pharmacy program?
- What is the ALS pharmacy program?
- What role does the ALS pharmacy play in DMC treatment?
- Why does it make sense to be supplied by a pharmacy specializing in ALS?
Care management for nutritional aids
Responsible Aysegül Erdem
- Are there any medications to treat unintended weight loss?
- Can a nutritional drink be prescribed by a doctor?
- Can a PEG tube be inserted on an outpatient basis?
- Can I continue to eat after having a PEG tube inserted?
- Can I feed myself “my own” food through the PEG tube?
- Can I have a PEG tube removed?
- Can I take a bath or shower with a PEG tube?
- Can I travel with a PEG tube?
- Can malnutrition occur even without a swallowing disorder?
- Can medication be administered via a PEG?
- How and why should a swallowing disorder be documented in the ALS app?
- How can body weight be measured if it is no longer possible to stand on the scale?
- How can Riluzole be administered via the PEG tube?
- How common is a swallowing disorder?
- How does weight loss occur in ALS?
- How is the energy requirement for ALS calculated?
- How long can I "put off" getting a PEG?
- How long does a PEG tube last?
- How often should body weight be measured?
- How risky is a PEG?
- Is a PEG painful?
- Is it true that a higher body weight is associated with a better prognosis for ALS?
- Is it true that ALS patients have particularly high energy needs?
- Is weight gain possible after PEG placement?
- What adjustments need to be made to food preparation in the event of a swallowing disorder in ALS?
- What adjustments need to be made to food selection in the event of a swallowing disorder in ALS?
- What adjustments should be made during meals for someone with a swallowing disorder?
- What are dysphagia products?
- What are the different stages of malnutrition?
- What are the symptoms of a swallowing disorder?
- What does a negative energy balance mean?
- What does a tube feed consist of?
- What is a "drinkable food"?
- What is a critical weight in ALS?
- What is a feeding pump?
- What is a nasogastric tube, and in what situations is this “stomach tube” useful?
- What is a PEG?
- What is a port, and in what situations is a port catheter useful?
- What significance does nutrition have for the prognosis?
- What support can the ALS app provide in controlling body weight?
- When is the “right” time for a PEG?
- Why and how should the PEG tube be documented in the ALS app?
Care management for physical therapy
Responsible Umunavihe Haihambo
- Are there any reasons to skip physical therapy?
- Are there physiotherapists who specialize in ALS?
- Can motor impairments in ALS be improved by physiotherapy?
- Can occupational therapy be discontinued during the course of the illness?
- Can physical exertion be harmful?
- Can physical therapy be harmful for ALS?
- Can speech therapy be discontinued during the course of the illness?
- How does heat affect the muscles?
- Is there an ALS-specific physiotherapy?
- Is there an ALS-specific speech therapy?
- What are remedies?
- What are the signs of physical overexertion in ALS?
- What assistance do occupational therapists provide in fitting assistive devices?
- What assistance do speech therapists provide when fitting aids?
- What can be expected from occupational therapy in ALS?
- What frequency and duration of occupational therapy is recommended for ALS?
- What frequency and duration of physiotherapy is recommended for ALS?
- What frequency and duration of speech therapy is recommended for ALS?
- What is a compression stocking?
- What is heat therapy?
- What is lymphatic drainage?
- What is occupational therapy?
- What is palliative physiotherapy?
- What is speech therapy?
- What is the aim of occupational therapy for ALS?
- What is the aim of physiotherapy in ALS?
- What is the aim of speech therapy in ALS?
- What is the physical limit for people with ALS?
- What should people with ALS look out for when choosing a therapy practice?
- When is home physiotherapy necessary?
Care management for respiratory aids and care
Responsible Diane Wontke
- Can I do without mask ventilation?
- Can mask ventilation be harmful?
- Do health insurance companies cover the costs of invasive ventilation?
- How and where is mask ventilation fitted in ALS?
- How and why can a breathing effort be documented in the ALS app?
- How can respiratory dysfunction develop in ALS?
- How can the differences in the frequency of invasive ventilation within Germany and across Europe be explained?
- How is palliative care provided when a patient is having difficulty breathing?
- How long can mask ventilation be performed?
- How long is it possible to live with invasive ventilation in ALS?
- How many hours a day is mask ventilation required?
- How often are ALS patients treated with invasive ventilation?
- How often should I use a cough aid?
- In what situations is administering morphine helpful?
- In what situations is administering oxygen helpful?
- Is ALS always associated with shortness of breath?
- Is invasive ventilation initiated only in emergencies?
- Is it permissible to discontinue ventilator therapy?
- What are the “counterarguments” against invasive ventilation?
- What are the limiting factors of invasive ventilation?
- What are the possible “side effects” of invasive ventilation?
- What are the potential challenges of mask ventilation?
- What are the potential drawbacks of mask ventilation that should be considered?
- What are the side effects of mask ventilation?
- What are the symptoms of respiratory dysfunction?
- What benefits can be expected from mask ventilation in ALS?
- What benefits can be expected from mask ventilation?
- What do “secret behavior” and “secret management” mean?
- What do vital capacity (VC), FVC or SVC mean?
- What does "aspiration" mean?
- What does "cough deficiency" mean in ALS?
- What does "invasive ventilation therapy" mean in ALS?
- What does "obstruction" mean?
- What does "treatment limitation" mean in respiratory therapy?
- What does "weak cough" mean?
- What does “NIV” stand for?
- What does a change in treatment goals mean in respiratory therapy?
- What does carbon dioxide anesthesia mean?
- What does hypoventilation mean in ALS?
- What does respiratory failure mean?
- What does vital capacity mean?
- What is a cough assistant?
- What is a tracheal cannula?
- What is mask ventilation?
- What is the importance of a cough assistant in ALS treatment?
- What is the relevance of vital capacity?
- What medications can be used to treat airway narrowing?
- What treatment options are available for hypoventilation in ALS?
- When is mask ventilation necessary and appropriate?
- Which symptoms of respiratory dysfunction can be alleviated without ventilators?
- Why and how should ventilation be documented in the ALS app?
Care recommendations
Responsible Pollen Eixab
Disease ALS
Responsible Dr. Senthil Subramanian
- Are the senses of smell and taste affected?
- Are there “miracles” when it comes to ALS?
- Are there any toxins that can cause ALS?
- Are there differences in the prevalence of ALS in Germany?
- Are there gender differences in ALS?
- Are there periods when ALS progresses more slowly?
- Are there regions with a particularly high incidence of ALS?
- Based on what criteria is ALS considered a rare disease?
- Can a Borrelia infection cause ALS?
- Can ALS be "mistaken" for other diseases?
- Can ALS be detected on an MRI?
- Can ALS be diagnosed using an EMG?
- Can alternative medical treatments be harmful?
- Can anesthesia and surgery trigger ALS?
- Can any neurologist diagnose ALS?
- Can cancer cause ALS?
- Can children develop ALS?
- Can exposure to amalgam cause ALS?
- Can I carry a pregnancy to term and have a child despite having ALS?
- Can I continue to play sports even though I have ALS?
- Can I continue to work even though I have ALS?
- Can I drink alcohol even though I have ALS?
- Can I eat “anything” even though I have ALS?
- Can I travel even though I have ALS?
- Can physical strain cause ALS?
- Can psychological stress cause ALS?
- Can the prognosis for ALS be determined from an EMG?
- Do I need a primary care physician for ALS treatment?
- Do men and women get sick with equal frequency?
- Does ALS always lead to death?
- Does ALS progress in episodes?
- Does it make sense to seek a “second opinion” regarding the diagnosis and prognosis of ALS?
- How can I receive psychological counseling?
- How common is a misdiagnosis of ALS?
- How common is bulbar syndrome?
- How does ALS affect relationships and partnerships?
- How does ALS affect sexuality?
- How does multiple sclerosis (MS) differ from ALS?
- How is an individual prognosis for ALS determined?
- How long has ALS been known?
- How many people in Germany suffer from ALS?
- How reliable is an ALS diagnosis?
- In what situations might a palliative care unit be an option?
- In what situations might hospice care be an option?
- Is ALS an autoimmune disease?
- Is ALS associated with pain?
- Is ALS curable?
- Is ALS difficult to diagnose?
- Is bulbar ALS associated with a poor prognosis?
- Is bulbar syndrome always a component of ALS?
- Is hearing affected by ALS?
- Is it a good sign if the fasciculations subside?
- Is it necessary for my primary care physician or neurologist to have experience with ALS?
- Is it possible to misdiagnose ALS?
- Is it possible to predict survival time?
- Is it true that ALS can progress to a “waking coma”?
- Is it true that the eye muscles can also be affected?
- Is it true that the incidence of ALS is increasing?
- Is sensation affected by ALS?
- Is spasticity always a symptom of ALS?
- Is the bladder affected by ALS?
- Is the circulatory system affected in ALS?
- Is the digestive system affected in ALS?
- Is the heart muscle affected by ALS?
- Is there a benign form of ALS?
- Is there a standstill in ALS research?
- Is there an ALS registry in Germany?
- Is there any way to protect yourself from ALS?
- Is there anything I can do to help slow the progression of ALS?
- Is vision affected by ALS?
- What are fasciculations?
- What are the most important factors that determine survival with ALS?
- What are the prognostic factors for ALS?
- What are the typical early symptoms of ALS?
- What can be detected in an EMG?
- What causes ALS?
- What causes the death of people with ALS who are already receiving tube feeding and mechanical ventilation?
- What do “first motor neuron” and “second motor neuron” mean?
- What does "motor neuron disease" mean?
- What does "non-invasive treatment" mean?
- What does "paresis" mean?
- What does “locked-in syndrome” mean in the context of ALS?
- What does “maximal therapy” mean in the context of ALS?
- What does a change in treatment goals mean?
- What does dysarthria mean?
- What does dysphagia mean?
- What does MEP stand for?
- What does myatrophy mean?
- What does sialorrhea mean?
- What does the term "amyotrophic lateral sclerosis" mean?
- What is a bulbar syndrome?
- What is a contracture?
- What is a palliative care team?
- What is a pressure ulcer?
- What is ALS?
- What is cerebrospinal fluid testing?
- What is cervical myelopathy, and how does it differ from ALS?
- What is degenerative motor neuropathy, and how does it differ from ALS?
- What is electromyography (EMG)?
- What is electroneurography?
- What is immune neuropathy, and how does it differ from ALS?
- What is inclusion body myopathy, and how does it differ from ALS?
- What is lymphedema?
- What is multifocal motor neuropathy (MMN), and how does it differ from ALS?
- What is palliative care?
- What is pathological laughter or pathological crying?
- What is spastic spinal paralysis (SSP), and how does it differ from ALS?
- What is spasticity?
- What is spinobulbar muscular atrophy (SBMA), and how does it differ from ALS?
- What is the cause of death in ALS?
- What is the difference between a diagnosis and a prognosis?
- What is the glutamate hypothesis of ALS?
- What is the life expectancy for people with ALS?
- What is the significance of acupuncture?
- What is the significance of alternative medical practices?
- What is the typical age of onset for ALS?
- What options are available for prolonging life in cases of ALS?
- What options for assisted dying are available in Germany?
- What tests are needed to diagnose ALS?
- When is a muscle biopsy necessary?
- When is a nerve biopsy necessary?
- Who gets ALS?
- Why are the eye muscles usually spared in ALS?
- Why can “constipation” occur?
- Why is ALS relatively unknown in Germany?
- Why isn't the EMG repeated at every examination?
- Why me?
- Why might the arms and legs become red, cold, or swollen?
FRS functional scale
Responsible Dr. Senthil Subramanian
- How does the online ALSFRS self-assessment questionnaire work?
- How does the online FRS function scale work?
- How does the SMA disease progression display work?
- What happens to my data from the FRS function scale?
- Where can I see my data from the FRS function scale?
- Why does the FRS function scale exist?
Log In and Sign Up
Responsible Felix Kolzarek
Patient account
Responsible Felix Kolzarek
Registration
Responsible Albertina Shilongo
Self-assessments
Responsible Felix Kolzarek
SMA app
Responsible Felix Kolzarek
SMA Therapy
Responsible Dr. Ronja Schiemann
Social protection
Responsible Barbara Hildebrandt
Variants of ALS
Responsible Dr. Senthil Subramanian
- Does PLS have a different prognosis compared to typical ALS?
- Does PMA have a different prognosis compared to typicalALS?
- How can I find out my phenotype classification?
- How is the onset of symptoms of ALS defined?
- Is PMA a "real" ALS?
- Is primary lateral sclerosis (PLS) a "real" ALS?
- What are the symptoms of the first and second motor neuron?
- What are variants and "phenotypes" of ALS?
- What does OPM classification of ALS phenotypes mean?
- What is a spastic variant of ALS?
- What is axial ALS?
- What is axial ALS?
- What is flail arm syndrome?
- What is flail arm syndrome?
- What is flail leg syndrome?
- What is meant by ALS propagation?
- What is primary lateral sclerosis (PLS)?
- What is progressive bulbar palsy?
- What is progressive muscular atrophy (PMA)?
- What significance do the phenotypes have for the prognosis of ALS?
- Where is the ALS phenotype displayed in the ALS app?
- Which phenotypes of ALS propagation can be distinguished?
- Which phenotypes of motor neuron symptoms of ALS can be distinguished?
- Which phenotypes of the site of symptom onset of ALS can be distinguished?
- Which phenotypes of the site of symptom onset of ALS can be distinguished?
- Why is the distinction between first and second motor neuron symptoms relevant in ALS?