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Living with ALS

Equipment Loan Programs
Equipment loan programs make used and donated medical equipment available to persons living with ALS.  Check with your doctor, ALS clinic, hospital, or ALS organization for availability and eligibility criteria.

• The ALS Association
• ​MDA-ALS Division offers assistance in locating needed items through referrals to community resources.

Home Modifications
Small changes can make a big difference in home accessibility, personal safety, and retaining independence.

• Les Turner Foundation: An excellent guide relating to home adaptations and funding.
• Quest Magazine: Home remodel experts explain which modifications offer the most bang for your buck and how to look for funding.
• The ALS Association discusses ideas for staying safe, retaining independence, and funding.
• The Les Turner ALS Foundation has a guide for home modifications

Wheelchair Van Grants for Accessible Vehicles
BraunAbility lists programs that help individuals afford mobility equipment. 

Ask for Help
Need a hand? Needing help is a common experience for everybody but can be emotionally difficult for someone with ALS. MDA's Quest Magazine has a good article about asking for help.

Medical Emergencies
Set yourself up for success in a medical emergency. MDA's Quest Magazine has good tips for doing just that.

Support Groups
Support groups are a wonderful way to meet other people living with ALS and to learn from them ... WHEN YOU ARE READY. Before attending a support group, perhaps a friend or loved one can attend a support group and report back to you on what it was like.

• Ask your healthcare provider for information on support groups in your area.
• ALS Association support groups

ALS Decision Tools, Guides and Webinars
The Les Turner ALS Foundation has put together some excellent decision tools, guides, and webinars on:

• Breathing
• Nutrition
• Communication
• Mobility
• Daily Living
• Relationships, Sex, and Intimacy

Webinars
ALS "webinars" are live or archived online seminars relating to ALS for people with ALS. Experts discuss a variety of topics, including living with ALS, caregiving, and research. Live webinars offer participants the opportunity to ask questions directly to the experts.

To find out the latest schedule of webinars:

• The ALS Association: ALS Association Webinars
• ALS-TDI (ALS Therapy Development Institute): ALS-TDI Webinars
• NEALS (The Northeast ALS Consortium): NEALS Webinars

ALSUntangled
Confused by all the different "cures" and "treatments" for ALS you find on the internet? ALSUntangled helps those dealing with ALS to review alternative and off-label ALS treatments.

​To check out alternative and off-label ALS treatments or to ask about one, go to ALSUntangled.

Patients Like Me
PatientsLikeMe believes in the power of community to improve the lives and experience of patients managing complex health conditions, including ALS. Their platform empowers patients to navigate their health journeys by sharing their personal experiences, stories, and information about their health, symptoms, and treatments, with a goal to improve the lives of all patients through knowledge derived from shared real-world experiences and outcomes. 

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Organizations supporting ALS families and ALS research
Click logo to go to website for more information on the disease, research, and patient and family support.