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By Natsumi Asanuma, MS, CCC-SLP
Speech Language Pathologist, Susan Mast ALS Foundation Many people with ALS (pALS) report variability in how clear their speech sounds, depending on factors such as energy level, time of day, and speaking situation. For those experiencing speech difficulties, thinking strategically about speech by working with your communication partner, setting up the optimal environment for communication, and conserving energy, can prevent communication breakdowns and reduce fatigue. These are often new habits that can be built over time and with a little extra attention. Coach Your Communication Partner Often, communication partners feel unsure of how to help prevent and resolve communication breakdowns. Have conversations that help them to understand your speech and communication needs, direct them to resources that explain communication needs related to ALS, or involve them when working with a speech language pathologist. The Boston Children’s Hospital ALS Augmentative Communication Program has a great resource for communication partners here. The following are some strategies for communication partners that may spark a discussion on your personal communication preferences:
It takes extra effort and repetition to compete with a noisy or distracting environment. Be mindful of the environment and move important or longer conversations to an optimal location whenever possible. Using a personal voice amplifier may be particularly helpful in some challenging environments and consistent use of an amplifier regardless of environment may still help to reduce fatigue throughout the day.
Check in with yourself periodically, particularly when you notice more communication breakdowns to see if you can optimize your speech or if you need to take a break. Consider using augmentative communication aids in conjunction with speech, such as a personal voice amplifier or letter board.
Mindful approaches to communication such as enlisting your communication partners’ help, setting up the environment, and modifying your speech can help improve comprehension when experiencing speech impairment related to ALS. In addition to trying these strategies, it is important to talk to your speech language pathologist, doctor, and clinic team about any speech changes or concerns to ensure that you get the appropriate individualized support and evaluations completed at the right time. Resources
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By Natsumi Asanuma, MS, CCC-SLP
Speech Language Pathologist, Susan Mast ALS Foundation Much like how a passport identifies key information about travelers across borders, a communication passport can be a great tool for sharing information about your unique communication needs to others. Learn what a communication passport is, what to include, and free templates for making your own. What is a communication passport? A communication passport is a quick way for someone with a complex communication needs to share their needs and preferences for how to best communicate. Many people with ALS (pALS) experience communication challenges, ranging from fatigue and weak voice/speech when tired to utilizing a communication device or system to replace speech. A communication passport takes the burden off of the pALS to explain their best communication methods to new communication partners and can hold commonly needed information that is often repeated. The communication passport can be an actual notebook or pamphlet, a digital note, a business card, or signs posted on your communication device, living area, or wheelchair, and should be easily accessible to share with others. What to include in a communication passport Your communication passport should reflect who you are and what your needs are at this time, and should be updated as needed. It can be written in a straightforward style or can incorporate humor. The following are some examples of things you may choose to include:
Communication passports are used by people with complex communication needs arising from any diagnosis or age range. The following are some examples online of communication passports, but note that they are not all specific to ALS:
A communication passport should be a “living document” that is edited to adapt to your current needs to ease the burden of repeating commonly shared information about how to best communicate with you. It is flexible in size and scope, so you may choose to start with jotting down a few key points to share with others and build the passport from there. Consider recruiting a family member or friend to work on this together, and talk to your speech language pathologist for further information about communication supports such as these. Find out more about communication support for West Michigan ALS families through the Jim’s Voice Program. By Natsumi Asanuma, MS, CCC-SLP Speech Language Pathologist, Susan Mast ALS Foundation  May is not only ALS Awareness Month, but also Better Hearing and Speech Month, which has the purpose of raising awareness of communication disorders and their solutions. The Susan Mast ALS Foundation is committed to supporting people with ALS to communicate their best in the face of speech challenges.
How does ALS affect communication? ALS causes nerve cells that control voluntary movement to degenerate, causing muscles to gradually weaken and waste away (1). When muscles that control speech, voice, and breathing are affected by ALS, it can cause a person’s speech to sound slurred or nasal, make their voice hoarse or weak, and make talking more fatiguing (1). In a small percentage of individuals, higher mental processes such as memory or language may be affected (1). These symptoms impact a person’s ability to be understood when talking, and the majority of people with ALS are eventually recommended some form of alternative and augmentative communication (AAC) to supplement or replace speech (2). What can you do about speech problems with ALS? Individuals with ALS and their loved ones can help ensure that they can maintain connection with others and independence with communication by being proactive about alternative and augmentative communication (AAC). There are simple techniques that people can use to make slurred speech easier to be understood, and easy-to-use tools such as a voice amplifier can help reduce the effort it takes to talk loudly enough. As speech becomes more difficult, people with ALS may use computerized speech generating devices or apps to act as their voices or use low-tech communication boards. People with ALS who are most successful with communication learn about the available tools and strategies before they need them the most, but it is never too late to improve communication skills. For example, many people who primarily use computerized communication devices to talk find that the synthesized voices on their devices don’t sound like them or have the proper inflection or emphasis their message requires. However, more people with ALS are working on message and voice banking before their speech is affected, which allows them to save recordings of meaningful phrases in their own voice and to create custom synthesized voices. Loved ones can also learn about communication strategies and AAC to support people with ALS. This can range from practical ways to reduce communication breakdowns and build empathy, to helping set up communication devices for the person with ALS. What is a speech language pathologist? A speech language pathologist (also known as SLP, speech pathologist, or speech therapist) is a professional trained to assess, diagnose, and treat speech, language, voice, cognitive-communication, and swallowing disorders. In the United States, SLPs must have a master’s degree and state license to practice, and are certified by the American Speech-Language-Hearing Association (3). SLPs work with people across the lifespan in a wide variety of settings, such as hospitals and schools. SLPs work with people with ALS in settings such as the multidisciplinary ALS clinic, outpatient therapy, inpatient rehab facilities, home health, and acute care hospitals. It is important that people with ALS talk to their doctors and clinic SLPs about speech and swallowing concerns and get referrals to see SLPs early. Most people with ALS who have communication impairments can qualify for speech generating devices through their insurance, and it is important to work with your doctor and SLP to get a communication evaluation at the right time. What is the role of a speech language pathologist at the Susan Mast ALS Foundation? Preparing for and dealing with communication impairment can often feel overwhelming or daunting. At the Susan Mast ALS Foundation, the SLP provides outreach and education on augmentative and alternative communication (AAC) for patients with ALS and their families in a comfortable setting and at a pace that’s right for them. The SLP can connect you to information and resources to help navigate the world of communication strategies, voice and message banking, and communication devices. The SLP also manages loan equipment related to communication to help bridge the gap for things like voice recorders for message banking and voice amplifiers, which are usually not covered by insurance, and works collaboratively with local clinic SLPs. Contact Natsumi Asanuma, MS, CCC-SLP at natsumi@susanmastals.org or 616-622-3066 for more information about communication support for West Michigan ALS families. Resources:
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