 by Emily Brechting, Ph.D.
Clinical Support Psychologist, Susan Mast ALS Foundation I’m a Chairbearer. That is, Bearer of the Chair. Not sure about this term? Read on. Recently I visited my brother Dirk in the Bone Marrow Transplant unit. It had been about two weeks since he was hospitalized with Influenza A (make that two strains to make things extra interesting) and pneumonia. He began receiving much-needed care to help him tackle these “ordinary” illnesses but his recovery from these stalled. A large pulmonary embolism was discovered that was impacting function in both lungs and emergency steps were taken to break up this clot. What followed was a complicated balancing act of blood thinners to eradicate the remnants of that clot and a concerning inability to control bleeding from several wounds including his incision site. The past few days have shown progress and provided some much-needed encouragement. His bleeding is mostly under control. He continues to recover from the influenza, pneumonia, and procedure. But these have taken their toll. He is weak. And weary. The day before my visit, his physical therapist arrived to begin the process of bolstering his strength and assessing readiness to be discharged sometime in the not-so-distant future. He moved around a bit in his room for therapy and then was exhausted for much of the day. During my visit, his PT wanted to see if he could climb a step or two and try to walk for a bit. He was willing to try, though in reality he looked like he wanted to be left alone to stay in bed. Sidebar: I could write a litany of posts about my brother’s tenacity, drive, ability to tolerate pain, and incomparable willingness to push himself. He is incredible. Now he was vertical. Leaning on his IV pole for stability, he headed toward the door of his room. His PT turned to me, handed me a folding chair, and asked me to carry it. She wanted him to have a place to rest when the journey became too taxing. “The chairbearer!” I exclaimed. He and I bantered about his status and high position at having a chairbearer follow him around. What’s next? A cupbearer? All joking aside, I was struck by the profoundness of bearing the chair as I walked behind him. It resonates with me that being a chairbearer is at the very core of community (whether with family or friends) and central to my professional life. We join the journey of those we love; it is an honor and privilege to carve out space for our dear ones to pause, rest, and recuperate when they are weary. When working with someone professionally, my goals are essentially the same. Friends, let’s look at this for the honor that is. Sure, the chair might be bulky and a bit awkward sometimes. Perhaps you prefer a quicker pace. But let’s embrace this chair-bearing role and serve each other well. By the way, he didn’t need the chair. He made an entire lap around the unit and flopped back into bed. Exhausted. Satisfied. Encouraged.
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 by Emily Brechting, Ph.D.
Licensed Clinical Psychologist, Susan Mast ALS Foundation what I’m learning about grief by Nancy Cross Dunham what I'm learning about grief ... is that it need not be a heavy gray shawl to wrap myself in, clutching my arms tightly across my chest nor ... need it be a granite rock that I should try to push away neither is it ... ... at least, no longer ... a vast dark ocean ready to pick me up and slap me down without warning what I'm learning about grief ... is that it is not me, but that it offers to become a friend a friend ... who will lightly lay a hand on my shoulder when tears come in the dark a friend ... who will laugh out loud with me at remembered silly moments a friend ... who can still hear the music of our life what I'm learning about grief ... is that this friend doesn't intend to leave me but promises to hold my hand to carry my memories a friend ... who will bear witness to my love as I venture toward the next day and the following night In May, we hosted our first Gather meeting. During these virtual meetings, loved ones of ALS patients connect to share their grief, support one another, and tell stories. Gather involves laughter, tears, and plenty of encouragement. While grief is unique to each person, Gather makes it possible to travel this journey with others who understand ALS and loss.  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. 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
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:
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 |
AuthorSusan Mast ALS Foundation Archives
November 2020
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