Important Things You Can Do
1. Register with your local chapter.
The ALS Association is going to be your greatest support, resource, and source of information. Simply call or email your local chapter and they will schedule a meeting or phone call to get started. You may also choose to get support from the Muscular Dystrophy Association (MDA).
2. Meet with your ALS clinic team.
Attend your nearest ALS clinic once every three months to meet with your team of specialists. They will answer questions, monitor your health, and make recommendations. This will help improve your quality of life—and, according to studies—could help you live longer.
3. Figure out your insurance coverage.
ALS can get expensive. Insurance—whether Medicare, private insurance, Medicaid, or the VA—should help pay for the majority of your needs. Apply as soon as possible because there are often waiting periods between applying for and receiving coverage.
4. Get the right equipment.
Your needs are going to change. Planning ahead and having the right equipment at the right time will give you greater independence, comfort, and quality of life.
5. Enroll in the ALS Registry.
The National ALS Registry is a special research initiative that collects information from volunteers with ALS in an effort to help scientists move toward improved treatment and an eventual cure. By enrolling and filling out a short survey, you can help make a difference.
6. Stay connected.
It is very important to maintain your friendships and to continue to communicate with those you love. We are social beings and there are many ways for you to stay engaged with others.
7. Eat well and stay hydrated.
This is especially important for you. Giving your body the nutrients it needs will help you stay stronger. If you are having a hard time maintaining your weight, talk with your neurologist and dietitian at your ALS clinic to learn what you can do and what your options are. Drinking plenty of water is very important.
8. Conserve energy.
You may notice that you have less energy than before. Everyday things like dressing, eating, and bathing can become exhausting. Pace yourself and conserve energy for the things you love to do. It is important to get a good night's rest and know when you need to recharge. It is okay to rest or take a nap during the day.
9. Try to make decisions ahead of time.
Many people procrastinate when it comes to future planning. But discussing difficult topics and getting things in order now can give you peace of mind. Making your wishes clear is also a huge gift to your loved ones. You can start working on advance medical directives, powers of attorney, estate planning, and end-of-life wishes.
10. Reach out to your support community.
You may not feel like reaching out right away to people after you have been diagnosed, which is completely up to you. But when you are ready, the more you reach out to your family, friends, and larger community, the more support you and your caregiver will receive.
Care for Your Caregiver
Your primary caregiver may be overwhelmed by the prospect of taking good care of you while juggling the demands of everyday life.
Oftentimes, the caregiver gets stretched so thin that he or she doesn’t end up eating or sleeping well, exercising, seeing friends, or doing anything other than working and caregiving. This can lead to feeling overwhelmed, stressed, angry, and even resentful. It can put an emotional strain on your relationship, no matter how much you love each other.
It is better for both of you if your caregiver has some personal time that doesn’t involve chores, errands, work, or caregiving. By taking better care of him- or herself, your caregiver will be happier in general and will take better care of you.
Respite care is very important for your caregiver. This is when family, friends, or professional caregivers fill in so that your caregiver can take some time off.
Give your caregiver permission to take this personal time. It may sound like a simple thing, but most caregivers feel very guilty for doing anything for themselves. It may feel uncomfortable at first, but one or two people cannot do it alone.
Remember to be kind. This is not easy for either of you.
Nowadays, there are many great online calendars and tools that can assist you and your caregiver in organizing help. Lotsa Helping Hands, Caring Bridge, and Google Calendars are a few options.
For Additional Information
We recommend avoiding the temptation to read everything you can find online. Not all information is accurate and you don't want to become so obsessed that ALS takes over your entire life. Be sure to find trusted sources. Beware of scams that offer expensive miracle cures.
For more in-depth information about ALS and how you can adjust to life with it, we suggest reading these guides from The ALS Association: