Living your best life with ALS: Disease Management and Treatment Considerations
First Things First
- 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
- Slow the progression of symptoms
- Manage the speed of deterioration in function
- Prevent unnecessary complications
- Increase individual comfort
- Prolong independence
- ALS neuro specialist
- General neurologist
- Primary care physician
- Respiratory therapist
- Speech pathologist
- Social worker
- Occupational therapists
- Palliative care specialist
- Spiritual advisor
- Holistic practitioners
Join the precision medicine program at ALS Therapy Development Institute
Targeted Medications Specifically For ALS
- Riluzole (Rilutek): This is a glutamate blocker that is orally administered in tablet or liquid form. It has been used to increaselife expectancy and can also delay the need and use of a ventilator or tracheostomy. Riluzole works to protect the nerves inthe brain and spinal cord from the overproduction of glutamate in the body, which is 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.
- Muscle cramps and spasms
- Excessive saliva and phlegm
- Sleep problems
- Uncontrolled outbursts of laughing or crying
Common ALS Assistive Therapies
- 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
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