Living your best life with ALS: Disease Management and Treatment Considerations
For many patients and their families recently diagnosed with ALS, making decisions regarding treatment, symptom management, and overall quality of life can be very confusing. In all cases, Augie’s Quest strongly recommends that you discuss the following resources with your care team and your team of qualified doctors. We are not physicians, but we are dedicated to raising awareness and providing helpful information to our ALS
First Things First
With amyotrophic lateral sclerosis or ALS, it’s very important to be as communicative and proactive as possible to help manage your disease from the onset of symptoms. There are many important steps in communication and disease management that you can take to improve your quality of life, your symptoms, and provide you with a longer, more meaningful outcome.
The most important first steps in disease management as it complements your treatment options are:
- Gather your support system
- Establish a clinical care team of physicians and specialists
- Create a communication game plan
- Learn about successful intervention strategies
- Collect information on managing symptoms
- Study treatment options
Teamwork can enhance your outcomes
It’s important to know and understand that current treatments can’t reverse or entirely halt ALS – yet. However, some innovative
treatments can help ALS patients maintain and manage their disease effectively. Current ALS treatments have been found to do the following:
- Slow the progression of symptoms
- Manage the speed of deterioration in function
- Prevent unnecessary complications
- Increase individual comfort
- Prolong independence
You will want to make sure that you assemble an integrated, multidisciplinary team of physicians and specialists trained in all the areas of your healthcare as it relates to your ALS symptoms. Specialists may include:
- ALS neuro specialist
- General neurologist
- Primary care physician
- Gastroenterologist
- Respiratory therapist
- Speech pathologist
- Social worker
- Occupational therapists
- Dietician
- Palliative care specialist
- Spiritual advisor
- Holistic practitioners
You will want to develop a communication plan with your team of physicians so as to establish consistency and transparency in your care. This could not only prolong your survival, but it will improve the quality of your life. Your care team should work together to select the best course of treatment for you while explaining their therapeutic benefits and/or risks.
Join the ALS Research Collaborative (ARC) at the ALS Therapy Development Institute
ARC, an evolution of the Precision Medicine Program (PMP), collects comprehensive natural history data from people with ALS and layers this with additional data that measures their underlying biological processes through omics.
The ALS Research Collaborative was born of, and will continue as, a global effort – one which promises to accelerate the pace of ALS discovery and better equip researchers around the world to end this devastating disease. We are only able to continue and evolve this work thanks to our incredible supporters like Augie’s Quest to Cure ALS. Watch a video to learn more about ARC.
ARC Data Commons
ARC’s extensive, continuously growing collection of data, is made accessible to researchers worldwide through the ARC Data Commons, an innovative data-sharing platform powered by Google Cloud and Google’s Looker application. The ARC Data Commons allows researchers to log in from anywhere in the world and easily search, analyze, and download this wealth of de-identified data. By providing a large, ever-expanding dataset, and powerful tools to filter and visualize the data, the ARC Data Commons will provide scientists with key insights – that previously might have required months or years of research – in a matter of minutes.
ALS patients from around the globe are enrolled in the program and share a wide variety of disease data and symptoms to better understand ALS and possible receptiveness to treatment options. The data collected is studied at the Augie’s Quest Translational Research Center, collecting a wide variety of unbiased data sets allows scientists to understand and comprehend all pathways of the disease and how it can progress and differ from one patient to the next.
ALS patients who participate in this program contribute to discovering new ALS therapies and treatments, help with clinical trial effectiveness and efficiency, and participants are given access to assistive data and a large variety of tools to manage their disease progression.
Targeted Medications Specifically For ALS
Currently, there are several drugs approved by the FDA to treat ALS and its symptoms.
As always, patients should carefully study each drug with their care team to determine if the benefits outweigh the risks. Augie’s Quest does not endorse any of the following possible treatments, and recommends you consider discussing these with your doctor:
- Relyvrio (AMX0035) was approved by the FDA in September 2022. Relyvrio can be administered through a feeding tube, or orally, and was designed to slow disease progression by slowing or preventing motor neuron cell death. This therapy targets both the mitochondria and the endoplasmic reticulum, both which play critical roles in maintaining neuron health and survival.
- Riluzole (Rilutek) and Tiglutik (riluzole oral suspension) and Exservan (riluzole oral film): This is a glutamate blocker that has been used to increase life expectancy and can also delay the need and use of a ventilator or tracheostomy. Riluzole works to protect the nerves in the brain and spinal cord from the overproduction of glutamate in the body, which can be the cause of nerve damage in ALS patients. Riluzole has been shown to increase survival three to six months longer in patients who consistently use the therapy. It can cause some side effects including dizziness, gastrointestinal conditions, and liver function changes.
- Edaravone (Radicava): This is an invasive IV drug (intravenousinfusion) that is thought to possibly slow disease progression and reduce deterioration. It works by reducing the effects of oxidative stress, which is an imbalance in the production of free radicals that attack antioxidant cellular defenses. This is thought to be one of the causes of nerve cell death and nerve damage in ALS patients. Keeping motor neurons healthy may help preserve muscle function. Side effects are significant, can include bruising, headache, and shortness of breath, and may outweigh the benefits of this drug.
- Nuedexta: This is an oral medication combination of an established cough suppressant, dextromethorphan, and a commonly used cardiac drug, quinidine. This drug has been approved to treat patients who develop pseudobulbar affect (PBA), which is common in ALS patients. ALS patients who have taken Nuedexta have found improvements in speech, swallowing, emotional control, and better management of oral secretions. A Phase II trial funded by the ALS Association found that Nuedexta favorably impacts bulbar function in people living with ALS.
- TUDCA (Tudcabil): Tudcabil (tauroursodeoxycholic acid) is an oral medication originally approved by the Italian Medicines Agency for the treatment of liver diseases. However, research suggests it may have a broader and more beneficial treatment application for ALS. Tauroursodeoxycholic acid is a bile acid taurine, combination derived from ursodeoxycholic acid. Bile acid is a beneficial human metabolite made in the liver and stored in the gallbladder. It aids in digestion and can assist as an “antiinflammatory agent, a neuroprotective agent, an apoptosis inhibitor, a cardioprotective agent, and a bone density conservation agent” (https://thesocialmedwork.com/tudcabiltauroursodeoxycholic-acid). This is a possible treatment option to be discussed with your provider and prescribed as a medicalgrade medicine from a reputable medical site.
Other medications to manage symptoms: Due to the nature of ALS and the disease progression, you may find that you will require some prescribed and over-the-counter medication for the following symptoms and co-diagnosis:
- Muscle cramps and spasms
- Constipation
- Fatigue
- Excessive saliva and phlegm
- Pain
- Depression
- Sleep problems
- Uncontrolled outbursts of laughing or crying
Common ALS Assistive Therapies
Due to a variety of symptoms and the idiopathic tendencies of the disease progression, ALS patients tend to require the following
therapies to assist in managing their symptoms:
- Respiratory Therapy (RT): As muscles weaken ALS patients experience difficulty in breathing. Patients will need to have a relationship with a respiratory therapist who can provide devices to assist breathing.
- Physical Therapy (PT): Many ALS patients find that a physical therapist can address pain, walking, mobility, bracing, and equipment needs that help patients maintain independence.
- Therapists can assist in practicing low-impact exercises to maintain functionality.
- Occupational Therapy (OT): Many certified occupational therapists can assist ALS patients in remaining independent for as long as possible and prescribe adaptive strategies and equipment to modify a home for accessibility.
- Speech Therapy (ST): Speech therapists teach adaptive speech techniques to help ALS patients’ speech continue to be understandable. They can introduce other methods and devices for communication.
- Nutrition & Dietary Support: The ALS care team helps ALS patients and their families to make sure all nutritional needs are met and meals are easier to swallow and digest.
- Mental Health & Social Support: It’s very important that your care team includes a social worker to assist ALS patients with insurance, financial arrangements, and obtaining service equipment and devices. Having a psychologist and mental health counselors and therapists is crucial to the mental wellbeing of patients and their caregivers.
Participation in ALS Drug Trials and Research
Some ALS patients may be a candidate to participate in an ALS drug trial and/or research study. Potential future treatments and clinical research trials can provide promising medications and treatments for ALS. When Augie Nieto founded Augie’s Quest to Cure ALS, it was his mission that all funds raised were invested directly towards the cure. Our funding and support for the Augie’s Quest Translational Research Center at the ALS Therapy Development Institute (ALS TDI) are helping continue our quest in identifying new drugs like tegoprubart (formerly AT-1501) to fight ALS.
We’re working day in and out to fund the next promising ALS treatments and have committed millions of funds for current IND enabling studies via our research partners at ALS TDI. We won’t stop until we end ALS. With Augie’s Quest, ALS doesn’t stand a fighting chance.
Join our Quest
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