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There are many wonderful ALS professionals and organizations that can help guide you and your family every step of the way. Living with ALS and caring for a loved one with ALS is challenging and overwhelming, to say the least. Even if you have prided yourself in being independent and self-sufficient, you will need to accept help and support. You cannot do this alone. |
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Working with and following the recommendations of ALS professionals will help you remain more independent. And accepting additional care support—whether hiring a professional caregiver or getting help from family and friends—can give your loved one(s) much-needed personal time to recharge and avoid caregiver burnout.
Continue reading to learn about the most important things you can do to develop a strong support network and have a better quality of life. |
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Attend an ALS Clinic
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Once you have been diagnosed with ALS, it is very important to attend an ALS clinic and meet with a multidisciplinary medical team that specializes in ALS. Studies have shown that attending an ALS clinic on a regular basis can extend your life by one year or more, in addition to extending your physical capabilities. If you are unable to attend a clinic, seek out medical professionals in your area who have experience working with ALS. Find an ALS clinic near you
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Register with a Local ALS Organization
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Nonprofit organizations can help guide you, answer questions, connect you to resources, and provide emotional and logistical support. Every organization is different, but many host support groups, loan medical equipment, and offer other free services. Connecting with an ALS organization is one of the most important things you can do. Find a local ALS organization
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Join a Support Group
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ALS support groups can provide a place where you can connect with and learn from others facing similar challenges. They can help give you a new perspective on your situation and realize that you are not alone. There are in-person and virtual support groups for people living with ALS, caregivers, family, and friends. Support groups are not for everyone, but we encourage you to attend at least once to see what you think. Find a support group near you
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Get and Use Medical Equipment
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There are many different types of medical equipment and assistive devices that can help you stay safe, conserve energy, and remain more independent. It is important to follow the recommendations of your ALS clinic or medical team so you will have the right equipment at the right time. Equipment includes mobility devices, respiratory devices, bathroom equipment, transfer devices, and communication devices.
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Save Money with Equipment Loan Closets
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Some of the larger pieces of equipment should be covered by Medicare, Medicaid, and private insurance. But many smaller items, such as eating, bathing, and toileting devices, are not covered. You can potentially save thousands of dollars by borrowing equipment from ALS loan closets. Many local ALS organizations and clinics loan certain types of medical equipment and assistive devices at no cost. Learn more
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Understand Your Insurance Options
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Health insurance options will be different for everyone, though insurance usually covers the majority of medical expenses—including equipment—for people who have been diagnosed with ALS. Most people living with ALS qualify for Medicare and Social Security Disability Insurance, regardless of age. Medicare can cover the bulk of your healthcare costs and SSDI provides a monthly income. Learn more
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Find Additional Care Support
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It is hard for one spouse or partner to be the sole caregiver of a loved one living with ALS. Family caregivers often feel overwhelmed, don’t take good care of themselves, and feel guilty for leaving their loved one’s side. Even if it feels uncomfortable, the person living with ALS needs to find a way to accept outside help and encourage their caregiver to take some personal time.
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There are a number of different ways to get additional care support:
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You can also ask family, friends, and members of your larger community to help with things like basic care needs and household chores. People often want to help if they know what you need. Read more
Take Care of Your Caregiver
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The way you treat your caregiver will have a direct impact on quality of life for everyone in your home. “As the person living with ALS,” says Joel Goldhirsh, “you have to realize that it’s not all about you. There are other people that are affected by the disease, especially a spouse or partner. Using caregivers gives family members the respite they need. Looking out for their well-being is just as important as thinking about your own.” Read more
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Be Your Own Advocate
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ALS clinics and organizations can support you, but ultimately, you are the one who will be in charge of your own care. Being proactive and advocating for yourself can help you get the best care possible, save money, and have a better quality of life. Read more
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Take Advantage of VA Benefits
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If you are a U.S. military veteran who qualifies for service-connected benefits, the VA should pay for the majority of your expenses associated with ALS. This includes access to VA multidisciplinary ALS clinics, durable medical equipment, disability compensation, a specially-adapted housing grant, and an automobile grant. Read more
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Learn More
This Home and Daily Living Guide is just one section of the much-larger Your ALS Guide website. We have developed this site to be an ongoing resource and reference that you can return to at any stage of the disease. We encourage you to explore Your ALS Guide to find more tips, information, videos, and resources on a wide variety of topics. Here are a few places you might want to start:
