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 firstname.lastname@example.org or 616-622-3066 for more information about communication support for West Michigan ALS families.
By Emily Brechting
Patient Support Psychologist, Susan Mast ALS Foundation
Given the current crisis, the Susan Mast ALS Foundation team is working to provide resources to ALS patients and families in West Michigan. The uncertainty of our situation can lead to feelings of worry and stress. Below is a brief introduction to several stress relievers written by John E. Schmidt, PhD.
PRACTICE BEING MINDFUL. Mindfulness is simply the act of focusing all your attention on whatever activity you are doing at any particular time. You can practice mindfulness when doing relaxed breathing, when praying, when eating, when driving, when taking a shower, even when you are exercising or listening to your favorite music.
Keep these simple rules in mind when you try being mindful:
1. Observe what is happening with all your focused attention.
2. Describe what is happening to yourself mentally.
3. Participate in the activity fully.
4. Be non-judgmental of the activity and of any negative reactions you have like if your mind wanders or is distracted by an unrelated thought. Just notice that you are distracted and bring your attention back to the activity.
The benefit here is that you are practicing keeping your mind from focusing on internal thoughts that are associated with worry and stress. When your mind wanders off of the activity you are doing and starts thinking about the future (e.g., what will happen tomorrow), those thoughts often trigger negative emotions like worry, fear, anger, guilt, etc. Practice being mindful several times a day when you are doing typical activities to train your mind to be more ‘in the moment’ and less easily distracted.
GO OUTSIDE AND GET SOME SUN AND FRESH AIR. If possible, take a break and head outside. As you soak in the fresh air and sunshine for a few minutes, take the opportunity to be mindful of how your body feels. Notice the environment and allow yourself to be immersed in it. The effects of being in nature (even a short while) on stress is well documented. Take a break and get some fresh air and feel the sunshine on your face!
READ SOMETHING UPLIFTING. One of the challenges with the ongoing situation is our constant need for new information. We become addicted to checking our favorite news source. That desire and behavior most certainly increases our stress and worry. Take some time each day to disconnect from the news and read something just for you, for your heart, for your soul. Many of us will open our Bible or other religious or spiritual writings. Perhaps you have a favorite author such as Maya Angelou, Thomas Merton, Eckhart Tolle, Saint Pope John Paul II, to name a few.
LISTEN TO RELAXING MUSIC. Music is ideal for stress relief. I always have soft, relaxing music playing in the background. My regular patients often comment on how much more relaxing it is. Listening to music daily is an easy way to lower your stress and allow your body to relax. Take a break and listen to your favorite artist. The music should be soothing and relaxing (so save the heavier stuff for when you are working out).
SPEND QUALITY TIME WITH YOUR FAMILY OR A CLOSE FRIEND (keeping social distancing in mind of course). A relaxing conversation, a laugh about something silly. These shared moments with those we are closest to are so important for our well-being, health, and for our relationships. Please take time each day to share these moments. Watch something relaxing, read stories, or play some games. These activities are great for you and your partner and can be especially important for your children as they cope with all the changes going on.
Given the impact that ALS can have on breathing, this exercise is suggested for caregivers.
SLOW RELAXING BREATHING. Just focus on your breathing for a couple of minutes several times throughout the day. Stop everything else, put yourself in a relaxed position, and breath in slowly, using your diaphragm and then exhale slowly, allowing your diaphragm and belly to return to the rest position. These breaths should be deep but not like a deep breath you take before jumping in a pool. Nice and relaxed, about 4-5 seconds on the inhale and 4-5 seconds on the exhale, breathing in and out of your nose if you can. Breathing through your nose makes breathing slowly easier and filters/moisturizes the air before it enters your lungs. While breathing, just focus on how your body feels, paying attention to your belly as it expands and contracts, noticing how the air feels going in and out of your nose. Try this simple breathing break several times a day for a few minutes to let your mind and body relax and let go of tension.
The goal here is to try to use some of these techniques for reducing stress and worry each day. It really does not take a whole lot of time or effort, just the desire to fit these activities into your regular routine. The benefit and impact on how you are feeling is so important, especially while we are all dealing with our very unpredictable situation. Each one of these activities is a way to take your mind off your stress and worry, momentarily. Your sense of well-being and resilience will grow stronger and you will feel healthier and more in control.
Be well and take care of you and your loved ones!
John E. Schmidt, PhD
Walter Reed National Military Medical Center