 Gratitude.
It’s been several weeks since our weekend-long PedALS event. In that time, I’ve had ample opportunity to reflect and I’m left with an overwhelming sense of gratitude. I filled a number of roles during that weekend: assisting bikers as they checked in, distributing swag bags after the ride, and working the merch table. Each of those roles afforded me chances to talk with participants and volunteers about why they were attending PedALS 2021. The conversations were unique but often framed around a similar query: “What brings you here?” “I’m riding for my co-worker because he no longer can.” “I’m walking for my uncle.” “I’m here to support my neighbor.” “We’re running to honor our friend.” Those comments bring me back to gratitude. Our supportive community made this event such an incredible success: sponsors, pledgers, participants, and volunteers. Thank you to all of you who contributed your time, resources, and energy. You make it possible for us to continue our efforts supporting Michigan families experiencing ALS.
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 In Memory of Susan Mast
How do you recall the essence of someone you have loved and lost? One way to remember a person is to learn the names they were called. Over the course of her life, Susan Mast collected a wide range of titles such as executive director, nurse, wife, mother, grandmother, MSU spartan fan, and dog enthusiast. Another perspective comes from examining how a loved one looks in photos. With her kind eyes and warm smile, Susan Mast appears every bit like the compassionate caregiver she was, a person who devoted herself to supporting others during their final days in hospice care. Perhaps my favorite way to get to know someone is through their words. The best inspirational quotes can help capture what a person is about deep in the core of their being. In Susan Mast’s case, there is a saying from her native Hawaii that goes “ahuwale ka po'okela i kau hana ia ha'i.” In translation, this quote reads “it is through the way you serve others that your greatness will be felt.” On November 1, 2014, Susan Mast passed away from ALS. To this day, we feel Mast’s greatness and strive to emulate Mast’s servant spirit. It is difficult to summarize Mast’s legacy in a few short words, but we can convey what Mast stood for. In her professional and personal life, Mast was present and caring toward the people in her life. She never stopped finding ways to make others feel valued. When Mast’s contracted ALS, her husband, Ross, sought to treat with the same respect and dignity Susan showed her patients. Yet Ross found himself often feeling burned out and in need of a need. That’s where the Susan Mast ALS Foundation began. What started as a small respite service has expanded into a nonprofit organization that serves over 100 families. At the Susan Mast ALS Foundation, we only provide a glimpse into who Susan Mast was, but seek to emulate her example. We hope to honor Mast’s memory in the way we deliver our programs and interact with patients each and every day.  By Natsumi Asanuma, M.S., CCC-SLP
As we enter the fall, farmers markets fill with a variety of colors, textures, and flavors of the season’s harvest. Each crop required its own optimal combination of nutrients in the soil, sun, temperature, water, and protection from pests to thrive. Living well with ALS and caring for pALS also requires an individualized mix of care and attention, but can often feel like planting mystery seeds in unpredictable weather. Despite the uncertainties about the changes with ALS, there are some universal skills to nurture throughout any point of the ALS journey. Foster a Growth Mindset: Good communication and fostering quality connections with others are skills. While acknowledging the devastation that accompanies the decline or loss of speech with ALS, you can always improve the skill of communication. PALS who develop their communication skills often find new ways of participating in meaningful activities, including time with family and friends, supporting other pALS, advocacy, spirituality, and making new connections, through creativity, technology, and advocating for their needs. Be Proactive: This process of improving and adapting communication skills takes time and effort and is often easier to accomplish by learning about the available tools even when they are not needed today. Those who choose to digitally preserve their voices using voice and/or message banking will have the best results by starting sooner. Communication equipment can also take time to acquire and learn to use. Just like we buy insurance with the hope of not having to use it, it’s okay to maintain hope that speech will be preserved while still taking the steps to be prepared. Tend the Seeds of Change: Facing potential or actual decline and loss of speech is severely challenging. Especially for those of us supporting pALS, keeping in mind that repeated opportunities to learn and be exposed to information with compassion is important in helping pALS take the necessary next steps. For pALS, identifying the best way you learn and seeking opportunities to revisit difficult or confusing information may make things a bit easier. Understand Symbiosis: Though the burdens of communication challenges often fall on the pALS, communication is multi-directional. Communication partners and the world at large also have the responsibility of adopting the principles of good, attentive communication, slowing down, and being inclusive of the needs of those with communication disabilities. What skills do you think are necessary to communicate well with ALS? Share your ideas with us in the comments or on our Facebook page. For patients of the Susan Mast ALS Foundation interested in assistance with speech and communication needs, contact SLP Natsumi at 616-622-3066 ext. 4 or natsumi@susanmastals.org.  Last month, I crafted two posts about persistence and endurance. This month, the Susan Mast ALS Foundation is focused on the theme of “Ride On” as we prepare for our annual fundraising event PedALS. It strikes me that we’re often inundated by motivational quotes about perseverance. They inspire and encourage us. Consider these examples:
“It always seems impossible until it’s done.” -Nelson Mandela “Perseverance is the hard work you do after you get tired of doing the hard work you already did.” -Newt Gingrich Persons with ALS (pALS) demonstrate unimaginable perseverance each and every day. So do their caregivers who provide vital assistance all day long. From a society-wide standpoint, the word perseverance often summons images of extraordinary athletes like long-distance runners. For you Olympics fans, you might envision the women's marathon in Tokyo during stifling heat. Feats of perseverance look different in the ALS community. Perseverance is sticking with a meal—even after 45 minutes. Because you know you need those calories—even when you aren’t hungry or interested in the food. As a caregiver, perseverance shows up in countless ways. It’s making the 9th adjustment to help your pALS find a more comfortable position. It’s the 3rd (or 4th or 5th) call to the medical provider to get the equipment your pALS needs. ALS is a moment-to-moment exercise in perseverance. Lately, I’ve engaged in numerous discussions with pALS who are exhausted. They are physically drained by the demands of the disease. Also, they are emotionally fatigued by not only ALS, but the ongoing impact of the pandemic on their lives. Where do we turn when persevering seems impossible? Grace—Love. Kindness. Goodwill. We typically think of grace and graciousness as they relate to how we interact with others. But so often we need to extend grace to ourselves. It’s okay to acknowledge the enormity of the challenge, the struggle of navigating every single day, the crushing fatigue. In those moments of weariness, let's pause and offer love, kindness, and goodwill to ourselves as we persevere.  This month, Marsha M. shares her perspective as a pALS navigating the process of preserving her voice and preparing for augmentative communication needs proactively:
“I chose to do voice and message banking because my husband and I were noticing changes in my voice such as a “gravelly” voice and low volume as the day progresses. A main issue was fatigue and lack of energy to communicate at length with friends who come for a visit. I realize that I am approaching this common voice and speech concern of ALS a little early; however, the process to get eye gaze technology is fairly involved. I wanted to be forward looking and plan for the days to come. Hopefully this will give me greater PEACE and CONTROL…that technology can be my helper. “I was concerned about the time it would take to record messages, bank them, meet with a Speech Language Pathologist (SLP) to complete the Augmentative and Alternative Communication (AAC) evaluation and then learn how to use the eye gaze technology. I wanted to get it done before my situation worsened and I wouldn’t have the energy to carry out the process one has to go through to get the right type of communication device. “Something to keep in mind throughout this process is for someone (patient or caregiver) to be proactive and follow up at all stages keeping good documentation. Natsumi Asanuma is one great SLP that Susan Mast ALS has on their staff. Be sure to include her on your journey to find the best communication device for you. “I would recommend others bank their voices and messages because it can give you HOPE to still be around, to be able to communicate with friends and family, to share your life stories and lessons with family and to leave your messages of LOVE for family members in your own voice.” Do you have questions about voice and message banking or communication tools? Patients and families of the Susan Mast ALS Foundation can contact Natsumi Asanuma, SLP, at natsumi@susanmastals.org or 616-622-3066 ext. 4 to receive assistance.  By Natsumi Asanuma, MS, CCC-SLP
Preserving and cherishing personal memories is often an important part of many pALS journeys. The use of audio and video recordings can be a good way to capture these stories and your voice. Message banking and voice banking are commonly used by pALS who have experienced minimal speech changes to preserve their voices digitally, in case a speech device is needed in the future. However, recordings in recordable books, albums, and digital interviews are additional methods that provide opportunities for creating that personal record. Message Banking Message Banking is a method of recording phrases of your choosing into a digital recorder to save in case a speech device is needed for communication in the future. First started in the ALS augmentative communication program at Boston Children’s Hospital, they coined the term “Legacy Phrases” to mean those phrases that are unique to you: the way you voice affection, humor, favorite jokes, signature sayings. Though message banking’s primary goal is to save phrases for a speech device, pALS often use this process as a way to save special messages for loved ones as well. Recordable Books & Albums Another way to preserve and share voice recordings is with recordable books and photo albums. For pALS with important children in their lives, recordable storybooks (can be found online or at stores like Hallmark) can be an easy way to save stories read in your voice. A talking photo album is another way to record memories associated with personal photos or to make your own custom recordable storybook with a little creativity. This album by Talking Products has additional features including locking recordings, a headphone jack, and a USB plug to transfer audio files for a back-up. Remember that these products and recordings are not compatible with speech devices and would be enjoyed as is. Digital Interviews Digital interview apps provide question and discussion prompts combined with an audio and/or video recorder to preserve your stories. RecordMeNow is a free app that allows you to choose your own prompts and creates videos of your responses that are saved directly on your phone’s photo album as videos that you can choose to keep private or send to loved ones. StoryCorps is a project aimed at preserving stories through interviews between two people. Though StoryCorps encourages sharing stories, the app is free and does not require publishing the interviews. With digital interviews, those who use speech devices or apps may use them to answer questions and communicate in the recordings, however, the recordings would not be used for message banking. What are some ways you cherish your memories? Have you tried any of these recording strategies? For patients of the Susan Mast ALS Foundation interested in assistance with message and voice banking or other communication needs, contact SLP Natsumi at 616-622-3066 ext. 4 or natsumi@susanmastals.org.  by Pam VanVliet, Care Services Manager
Making Memories is so important with family and friends especially when living with ALS. Traveling can be tricky and being well prepared can ensure you have a great time! Here are a few tips when preparing for your trip: 1. Contact the local ALS Association in the areas you will be. They can deliver manual wheelchairs, raised toilet seats, portable ramps, and other equipment you may need. 2. Pack a separate suitcase with any items you require for your comfort such as;
Make a list of what your needs will be and let the hotel know. If you can, look at pictures of the room you will be staying in to get a feel for what the "Handicap" room means to them. These are just a few things to think about. You can travel well and make great memories living with ALS!  by Emily H Brechting, Patient Support Psychologist
My family has been caught up in the excitement of the Summer Olympics in Tokyo. We gather together to watch the day’s events and collectively marvel at the spectacular displays of athleticism. We ooh and ahh, cheer at the screen like the competitors can hear us, and relish those surprise victories. Some of us (ahem, it’s me) wipe tears during stories of adversity and sacrifice. Recently, we learned about the daily training regimen and dietary plan of one highly decorated swimmer. The commentator described untold hours of exertion, outlined rehabilitation and strength training, and explained carefully selected nutritional plans. In sum, this one athlete navigates each day with a singular focus. Dedication. Endurance. Focus. Wait—that sounds like so many of our ALS families. Before you dismiss my comparison of ALS patients to Olympians, hear me out. Consider the time and energy exerted by patients and families to navigate a single day of meeting nutritional needs: preparation, chewing, swallowing, administering feeds, cleaning feeding tube equipment. Now think about the time and energy expended to transition from bed to a powerchair for the day: getting out of bed/using a lift, bathing, toileting, dressing, getting into the chair. I could continue on this theme highlighting the demands of living with ALS, from leaving the house to navigating a clinic appointment, but I’ll stop here. We don’t hand out medals for living with ALS but maybe we should. Let’s recognize these warriors and their amazing caregivers who make their daily fight against ALS possible. They endure. They persist. We see you.  By Natsumi Asanuma, MS, CCC-SLP
Writing a best-selling memoir with eye blinks. Making award-winning contributions to theoretical physics. Leading ALS organizations. These are some of the accomplishments of public figures who used alternative and augmentative communication (AAC), with many more works are listed here. Meaningful communication independence can also be in the form of using an eye gaze speech device to participate in a support group, speaking with an iPad to your doctor at a clinic appointment, or “liking” a photo of your granddaughter on Facebook; all examples of successes from within the Susan Mast community. Steve Gleason, ALS philanthropist/advocate and former New Orleans Saints football player, once said about ALS, “Until there is a cure, technology is the cure.” Though not all pALS will need to use them, the following are some of the types of communication technologies that may be a part of a toolkit for communication independence. High Tech Alternative and Augmentative Communication AAC encompasses a wide range of tools and strategies ranging from no/low tech to cutting edge technology used for communication by those who have speech impairment or loss. An evaluation with a speech language pathologist (SLP) knowledgeable with AAC can help you find the tools and techniques that best match your current and anticipated needs for communication and motor/physical access of a device, and adjustments may be made to your toolkit if your needs change. With high tech AAC, pALS may pursue options that are often covered by insurance called speech generating devices (SGDs) or may use lower cost personal electronic devices such as smartphones and tablets. Speech Generating Devices are electronic AAC devices that speak aloud messages that the user selects. The user may type messages on a physical or on-screen keyboard or select buttons with words, phrases, or pictures that are combined to make the message. The software program used to create the messages and the methods of selection are customized to the user’s communication and physical needs. For example, the late physicist Dr. Stephen Hawking used a switch activated by his thumb to type during this 1994 speech, but later used a switch activated by his cheek muscles as described in this segment. Many pALS, such as Steve Gleason, opt for devices that track eye movements to “click” on screens like a mouse. Insurance-funded SGDs can be particularly helpful for those who require specialized selection methods such as eye gaze tracking, which can be costly to purchase out-of-pocket. Whatever the device or method, SGDs require an evaluation with an SLP, a doctor’s order, and insurance authorization, with Medicare covering 80% of the cost of a device and mount (with the rest often covered by Medicaid or private insurance). Insurance typically only covers one device every 5 years in the best-case scenario, so it is important to get the evaluation at the right time and have the opportunity to try different devices to make the right match for your current and anticipated needs. Your clinic SLP can answer questions about your individual case and when it may be right to start the evaluation process. Personal electronic devices such as smartphones, tablets, and laptops have options for text-to-speech and communication apps as well as built-in accessibility features that may make communication easier or possible at all for those experiencing changes in dexterity or limb mobility. Depending on the features needed, some pALS use personal devices exclusively, while others start with personal devices and transition to SGDs. Communication Apps: For many pALS, a communication app needs to have the functions to have typed messages spoken aloud, save and categorize frequently used phrases, ability to choose or load a custom synthetic voice, and have the button/keyboard sizes match their vision and motor skills. Communication apps are available at different price points, features, and for different devices. Your SLP may have recommendations or may be able to demonstrate apps for you, and patients of the Susan Mast ALS Foundation may speak with our SLP as well. Using search terms such as “text to speech” and “AAC” (which stands for alternative and augmentative communication) in your device app store may be a good starting place for exploring options. Accessibility Features: These features may offer ways navigate your phone differently, such as by voice control (for those with clear speech), camera head tracking, and switch control or button modifications (for those with fine motor difficulties). Your SLP may help you to set up these features in conjunction with a communication app, if this is the best method for you. Features vary by type of device, and an occupational therapist or assistive technology specialist may be good resources for learning how to make adaptations that best suit your needs. Accessories for Personal Devices: Adding more powerful speakers, adaptive mouses or switches, or mounts to devices can also make these tools more accessible to your needs. Eye tracking sensors and software are also available now for Windows and iPad Pro even without an insurance-funded SGD (though cost can be a limiting factor). Even for those not pursuing an insurance-funded device, an evaluation with an SLP, occupational therapist, and/or assistive technology professional can be helpful in getting recommendations for the best set-up for your individual case. Long Distance Communication The broad view of communication includes anything from texting and video calls to e-mail and social media. Fortunately, many AAC devices also make some of these other forms of communication accessible as well. Medicare rules require that SGDs paid for by insurance provide only speech-related functions, so users should reach out to their device companies to find out the fee (usually under $30) and procedure for “unlocking” their device to be able to use the normal internet and computer functions typically built into their devices. There are often accessibility adaptations for some of the most popular apps and functions, such as e-mail, social media, internet, video streaming, e-books, and games that are available after paying the unlock fee for SGDs, and the accessibility features on personal devices may also help make non-communication apps easier to use as well. Summary The wide range of available technologies and options for AAC means greater opportunities for staying connected with others in the way that suits your individual needs and goals. Don’t be afraid to find assistance from an SLP, occupational or physical therapist, and/or assistive technology professional to match you with the tools that are best for you. For patients of the Susan Mast ALS Foundation, contact SLP Natsumi at 616-622-3066 ext. 4 or natsumi@susanmastals.org for assistance or more information. Resources Accessibility Features by Operating System: Speech Generating Device Vendors (alphabetical):  ALS is a relentlessly demanding disease. It requires ongoing adaptations from patients, caregivers, and family members.
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AuthorSusan Mast ALS Foundation Archives
November 2021
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