Communicating With Your Care Team
Communicating regularly will help them monitor your disease progression, manage any symptoms you may be experiencing, and connect you with information and resources you may need.
Your loved ones are also a vital source of support. They can help assist you with physically demanding tasks and also serve as an emotional lifeline.
Learn About Helpful Interventions
Below are some interventions you can choose to stay ahead of your disease. It’s important to remember that, before making any lifestyle changes, you should first speak with your healthcare provider(s).
Malnutrition affects up to 50% of people with ALS. The main cause of malnutrition is difficulty swallowing due to a weakness in the muscles that involve swallowing or chewing food.
Taking the Right Steps:
If you can still chew and swallow safely, consume foods and liquids high in calories and high in protein.
If eating and drinking are considered unsafe, your healthcare team may consider a percutaneous endoscopic gastrostomy (PEG) tube, which is a small tube that is inserted directly into the stomach to provide a means of delivering food, liquid, and medications. Most people find PEG tubes much more comfortable and convenient than they originally thought.
As the muscles involved in respiration (breathing) weaken, it becomes harder to breathe. Symptoms may include gasping for air, fatigue, frequent yawning, morning headache, insomnia, and difficulty lying flat. Respiratory failure is the leading cause of death in ALS, so it's important to intervene early.
Taking the Right Steps:
Noninvasive ventilation (NIV) can assist with breathing by using air to expand the lungs. This can be done via a face mask or nasal pillow and is intended as part-time respiratory support. Starting NIV earlier as opposed to later, when respiratory function worsens, has been shown to prolong survival.
Many patients eventually require invasive ventilation that supports the entire respiratory system. This form of respiration requires the surgical insertion of a tracheostomy tube into the neck.
Tips for Managing ALS*
Decide which goals and aspirations are most important to you, and stick to them. Concentrate on the people and things you love.
If you ever have a question or need help with a task, don't hesitate to ask your healthcare provider(s) and/or caregiver.
Before leaving the house, always double check you have what you need to be prepared.
Surround yourself with family, friends, and the things you love.
Consider modifying your home to be more assessable and easier to navigate.
There are many types of equipment that can help you maintain your independence for longer and be more comfortable.
Work with your healthcare provider(s) to see what interventions and treatment options may be appropriate.
A trained professional can help you and your loved ones cope with any emotions you're feeling.
Ask About Treatment Options
The Benefit of Working With a Clinical Team5
Each expert becomes a collaborative member of your personal care team. The goal of this team should be to work together to come up with and maintain a care plan that best fits your needs, not merely treat the disease.
Palliative care physician
Pastoral care worker
Primary care physician
ALS specialist (neurologist)
Nurse who specializes in neuromuscular conditions
Keep Track of Your Healthcare Team
For each person you meet, it’s important to write down the following information:
Name: ex. John Smith
Specialty: ex. Respiratory therapist
Contact Information: ex. 555-5555, JohnSmith@email.com
Notes: Use this area to fill in any important information provided by your healthcare provider(s), such as tips, instructions, or next steps.