9 Areas of ALS Care
Inside this guide, you’ll find an organized system to simplify care management for a complex journey.
Feeling overwhelmed? Read this first.
You may have recently received an ALS diagnosis. It's okay if you're overwhelmed, numb, angry, or afraid. Amyotrophic Lateral Sclerosis can be a heavy diagnosis, and while some families want to jump into action, others need time to process.
You can reach out to us anytime. Even if you're just trying to make it through the day. We've been through the progression journey and understand how difficult it can be.🧡
We’re here to offer you the support we wish we had. Book a free support call by getting in touch with us.
1. Organize Health Info
KEEP INFORMATION UP-TO-DATE AND EASILY ACCESSIBLE
Update calendar: Create shareable calendar for appointments and key events.
Maintain centralized contact list: One place to store contact information for important people and agencies
Organize health information: Create a folder with test results, allergy lists, medications logs, and IDs.
Track passwords: Securely save login information for accounts and online portals, like LifeLabs.
2. Friends & Family Support Network
OFFER CLEAR ROLES FOR LOVED ONES WHO WANT TO HELP
Caregiving: Taking care shifts and getting trained to support
Food preparation: Preparing meals that meet dietary needs
Companionship: Regular visits and emotional support.
Restocking: Ensuring supplies are always available.
3. Financial Navigation
DEVELOP A PLAN TO COVER EXPENSES & LEVERAGE RESOURCES
Budgeting & expense planning: Manage costs associated with ALS care, including medical expenses, caregiving, equipment, and home modifications.
Government benefits & funding: Explore the complex network of government assistance programs available to ALS patients.
Fundraising & non-profit support: Connect with ALS foundations and consider community fundraising for additional financial aid.
4. Home Modifications & Equipment
ADAPT HOME ENVIRONMENT TO ENSURE INDEPENDENCE & COMFORT
Home assessment: For lifts, ramps, bathroom adaptations, and other accessibility considerations.
Installation coordination: Work with contractors to complete modifications.
Equipment procurement: This includes power wheelchairs, feeding tubes, ventilators, and other progression-related equipment.
Assistive technology: Voice control, smart home features, and communication devices like the Tobii Dynavox.
5. Caregiver Management & Training
BUILD AND MAINTAIN A RELIABLE CARE TEAM
Recruitment & vetting: Find caregivers and complete background checks.
Training & onboarding: Provide ALS-specific and education and develop a daily care checklist.
Scheduling & coverage: Organize regular shifts and backups for cancellations.
Performance oversight: Monitor care quality, gather feedback, and foster an empathetic culture.
Team communications: Use group messaging and newsletters to keep caregivers aligned.
6. Progression Planning & Adapting
PLAN FOR EVOLVING CARE NEEDS TO REDUCE CRISIS DECISION-MAKING
Key ALS milestones awareness: Read the full Managing Progression Guide for an in-depth understanding of important progression milestones, including the decision to ventilate.
Update equipment & assistive devices: Stay flexible as needs evolve.
Medical directives: Prepare a care plan with preferences when visiting the hospital.
Designate an advocate: Ensure your advocate understands your wishes and can communicate them if needed.
7. Agency & Medical Team Coordination
ENSURE CARE MEETS YOUR EXPECTATIONS AND IS DELIVERED SMOOTHLY
Family doctor: For ongoing primary care, general health monitoring, and referrals.
Specialist doctors: This includes your neurologist, respirologist, and other ALS-related specialists.
Government services: This can include community caregivers, nurses, and various therapists.
Agency & non-profits: These are ALS-focused agencies like PROP, CAYA, GF Strong, the ALS Society, and others.
Holistic practitioners: These might include a naturopath, masseuse, acupuncturist, and other alternative care professionals.
8. Medications, Supplements & Therapies
RESEARCH AND IMPLEMENT TREATMENTS TO MATCH YOUR GOALS
Prescriptions & supplements: Track usage, refills, and renewals.
Pharmacy coordination & delivery: Ensure timely delivery from providers.
Clinical trials: For people diagnosed early, this may be an option to explore.
Alternative therapies: You may choose to explore non-traditional approaches to maintain health.
9. Mental Health & Wellness
SUPPORT EMOTIONAL WELLBEING THROUGH ALL STAGES OF ALS
Emotional & social support: Plan regular visits from loved ones and consider an ALS-focused community.
Adapted hobbies & purpose: Maintain a sense of purpose through activities and passion projects
Mental health care: Manage grief, anxiety and depression with regular professional support.
End-of-life planning: Thoughtful preparation for later stages with care, dignity, and clarity.
Need Support?
Book a free 15-minute support call and let's manage your care needs together.
Need more in-depth help?
Our 'Managing Progression' guide walks through the journey in detail.
Still have more questions?
Whether you’re seeking personalized guidance, need more information, or just have a few more questions, our team is ready to support you. Don’t hesitate to reach out!