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Quiet Spaces

10/30/2020

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by Emily Brechting, Ph.D.
Licensed Clinical Psychologist, Susan Mast ALS Foundation

How often do we genuinely pursue the quiet spaces? No music. No TV. No chatter. No noise. We are busy, with lives filled with hustle and bustle. Things to do. Things to accomplish.

And now, we are in a unique time for our community, country, and world. As we continue to rally together by staying apart, many are experiencing an unprecedented time of slowing down: unrushed meals at home, family time in the yard, easy conversation while tackling a jigsaw puzzle.
These are beautiful moments. I’d like to offer a suggestion, bit of encouragement, or even challenge. Will you choose to use this time to pursue quiet spaces? That is, will continued social distance translate into personal refreshment? For some, you may create a new routine of seeking out quiet places while others may build on what you’re already doing.
This may be a time of prayer, spiritual connection, or personal reflection. Many of us have created the noise and busyness in our lives because we’re afraid to slow down, quietly take stock, be still. The idea of time alone makes us uncomfortable. If you are feeling rusty at being still, start small. Begin with 5 minutes at a time in a comfortable place. Let's use this continued disruption of our routines to engage in some personal care. Pause. Breathe. Reflect.

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Communication Strategies for Speech

6/29/2020

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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: 
  • Allow for extra time for conversations/interactions and provide your undivided attention. 
  • Allow the pALS to finish what they are saying and avoid interruption. 
  • If you don’t understand something that the pALS said, repeat/restate the part that you did understand before asking for clarification (e.g. “I understood that you want the sandwich, but I didn’t catch what kind”). 
  • Do not pretend to understand. If the pALS appears fatigued, give choices for how to resolve the communication breakdown (e.g. “I want to understand what you have to say, but I’m having a hard time. Do you want to take a break and come back to it later, write it down, or is there someone else you want to include in this conversation to help?”). 
  • Respect the pALS’ autonomy by asking permission to share information about them instead of talking for them and address the person and not their caregiver unless asked by the pALS. 
Create a Communication-Friendly Environment 
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. 
  • Ensure adequate lighting and make sure your communication partner can see your face. The visual of the face and nonverbal communication can give more information to help “fill-in” some of the gaps. 
  • Eliminate or reduce background noise: turn off the TV/music/radio, be aware of noisy appliances, and move to a quiet space if possible. Some people report choosing restaurants carefully based on noise and set-up. 
  • Consider the size of group conversations. Larger gatherings with side conversations may be more challenging than smaller ones. 
  • Make sure you have the other person’s attention. 
Speech Strategies 
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. 
  • Ensure that you are positioned comfortably and upright with adequate supports to have your best posture. 
  • Give context by stating the topic of conversation and avoid quickly changing topics. (e.g. “Let’s talk about tomorrow’s doctor’s visit.”) 
  • Pace speech by breaking up phrases and sentences to one word at a time. 
  • Pronounce all of the sounds of the word, paying particular attention to “skipped over” sounds in connected speech. 
  • Spell or point (using a letter board) to the first letter of the word. This can be used to clarify missed words or can help you to pace speech if consistently used with a letter board. 
Conclusion 
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 
  • Speech Strategies from the Boston Children’s Hospital ALS Augmentative Communication Program 
  • Communication Basics for pALS from Amy and pALS 
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No Travel Required: Using a Communication Passport to Ease Interactions

6/16/2020

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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: 
  • Personal information: The basics such as name, birth date, contact information 
  • ​Emergency information: Emergency contacts, allergies, medical diagnoses, hospital and doctor contacts, clinic information 
  • People: Names, contact information and relationship to family members, friends, and/or other important people. 
  • ​About ALS: A brief explanation of ALS and how it affects your communication. It may be helpful to include a statement about how ALS does not affect your hearing or understanding, even if speech is reduced. The ALS Association’s Medical Information Packet has good information included in it.  
  • Communication:  
    • Your best method for communication: Examples may include speech, communication boards, communication device (you can describe further, e.g. “I use a computer controlled with my eyes to speak”), writing, or with my caregiver (specify the person). You may also want to include information on how to set up your communication system (e.g. “Please make sure I have access to my notebook and pen when talking” or “Please make sure my iPad is switched on and on my lap”). 
    • ​Yes/No Signals: How do you signal yes or no? 
    • Communication preferences & tips: What do you need your communication partner to understand about communicating with you? Examples may include, “Please give me extra time to type my message,” “Let’s talk in a quiet area,” “I will let you know I’m getting tired by...” or “Please include ___ in all important discussions.” The Boston Children’s Hospital ALS Program has a great list of communication partner tips compiled from feedback from pALS.  
    • Basic communication boards: Including an alphabet board or other quick access tools. The Boston Children’s Hospital ALS program has a great free download here. 
  • Make it personal: Include information about you. What are your likes/dislikes? What do you like to talk about? Including information about favorite sports, memories, movies/TV, books, and interests can help others to get to know you. 
Examples of Communication Passports 
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: 
  • The ALS Association: 
    • Medical Information Tools: A compilation of free downloads and digital apps. You can also request printed copies from ALSA. 
    • Medical Information Packet: This tool goes beyond communication and provides places to organize your medical information. 
  • The University of Edinburgh Powerpoint Template: A free downloadable template for an adult communication passport. 
  • Inclusion Communication Essex Communication Passport Templates: Free downloadable templates in Word format 
Conclusion 
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. 


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May is ALS Awareness & Better Hearing and Speech Month

5/13/2020

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By Natsumi Asanuma, MS, CCC-SLP
Speech Language Pathologist, Susan Mast ALS Foundation
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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:

  1. National Institutes of Neurological Disorders and Stroke. (2013, June). Amyotrophic Lateral Sclerosis (ALS) Fact Sheet. Retrieved from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-Lateral-Sclerosis-ALS-Fact-Sheet 
  2. Beukelman, D. R., Ball, L. J., & Pattee, G. L. (2004, December 1). Intervention Decision-Making for Persons with Amyotrophic Lateral Sclerosis. Retrieved from https://leader.pubs.asha.org/doi/10.1044/leader.FTR2.09222004.4 
  3. American Speech-Language-Hearing Association: https://www.asha.org/
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Brief Stress Relievers to Practice During the #StayHome Order

3/23/2020

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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 ​
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