Living with Amyotrophic Lateral Sclerosis (ALS) presents unique challenges that can affect speech, cognition, and swallowing abilities. A Speech-Language Pathologist (SLP) is a vital part of the care team for individuals with ALS, offering crucial support and strategies to manage these issues effectively. Whether you're considering outpatient or home health SLP services, asking the right questions can enhance your care experience and outcomes. Below are some essential questions to guide your discussions with an SLP.
Questions About Swallowing
Swallowing difficulties are common in ALS, and managing them effectively is crucial for maintaining health and quality of life. Consider asking your SLP the following questions:
- How can I manage excess saliva? Understanding techniques to manage saliva can prevent discomfort and potential complications.
- Why is oral care and dental hygiene important when living with ALS? Proper oral care is essential to prevent infections and maintain overall health.
- What should I do if I notice that I’m coughing and/or choking when eating or drinking? Knowing the signs of swallowing difficulties can help you take timely action.
- How do I know when a food or drink is no longer safe to consume? Recognizing unsafe foods can prevent choking and aspiration.
- Are there steps to modifying my diet or the way I eat prior to getting a feeding tube? Dietary modifications can help maintain nutrition and safety.
- Will I need to get a feeding tube eventually? Can I still continue eating or drinking by mouth if I choose to get a feeding tube? Understanding your options can help in making informed decisions.
Questions About Communication
As ALS progresses, communication may become challenging. Here are some questions to help you address these changes:
- Are there ways to help me communicate without using technology? Exploring non-technological communication methods can be empowering.
- Are there any mouth/facial exercises I can do to help me keep talking instead of using a communication device? Exercises can help maintain speech clarity for as long as possible.
- How do I get the attention of my family member or caregiver if I’m having trouble talking? Establishing effective communication signals can improve interactions.
- How can I prepare myself, and my family and friends for upcoming changes to my speech? Preparing for changes can ease transitions for everyone involved.
Questions About Communication Technology
Technology can significantly enhance communication for individuals with ALS. Consider these questions:
- If/when the time comes, can I expect you to help me explore different types of communication technology? Are you able to assist me with message banking, voice banking, and/or “Double Dipping?” Understanding your SLP's role in technology adoption is crucial.
- How will I know when it’s time to look for a device to help me communicate? Identifying the right time for technology can optimize its benefits.
- If I decide to use a communication device or a communication App, who will teach me how to use it? Knowing who will provide training ensures effective use of the device.
- What is the process like for obtaining a high-tech communication device through my insurance company, Medicaid, or Medicare? Understanding the process can facilitate timely access to necessary devices.
- What if I don’t have insurance, have a large copay, or don’t have coverage to get a communication device through insurance? Are there organizations that can provide a loaner communication device? Exploring alternative resources can provide access to needed technology.
- How would I use a communication device if I can’t use my arms and hands? Knowing about alternative access methods ensures continued communication.
- Is there assistive technology that could be helpful if I can speak clearly but my hands and arms aren’t able to use my current technology (phone, computer, tablet, etc)? Assistive technology can bridge gaps in functionality.
Questions About Cognition and Memory
Cognitive changes can also occur with ALS. These questions can help address such issues:
- If I notice that I’m not thinking or remembering as well as I used to, are you able to provide any support with this? Cognitive support can aid in maintaining mental sharpness.
- What are some changes in my thinking that I may notice that would prompt me to contact an SLP? Recognizing cognitive changes early can lead to timely interventions.
- My mind feels frazzled. What are some strategies to help me stay organized with appointments, visits, tests etc? Organizational strategies can enhance daily living.
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