By Natsumi Asanuma, M.S., CCC-SLP   The holiday season has been a wonderful time to observe the generosity of our community. I have the privilege of witnessing the impact that pALS, caregivers, family, friends, clinicians, and donors have had on those impacted by ALS. Gifts to the ALS community can take many forms and aren’t limited to just one season. Here are some ideas for ongoing ways to contribute to the ALS community, with a communication-centered theme.  How the pALS support team can give: Anyone supporting a pALS or interested in contributing to the communication needs of p ..read more

by Emily Brechting, Patient Support Psychologist Weariness.  Disappointment.  Heaviness.    Let’s give ourselves permission to be in this space.       Sorrow and disappointment make many of us uncomfortable.  Perhaps you are accepting of these feelings but expressing them makes those around you feel uncertain and discomforted.  We’re often quick to distract or deflect, trying to evade these negative thoughts and feelings.  So often, this comes with well-intentioned encouragement to dismiss these struggles and simply “focus on ..read more

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?”&nbs ..read more

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 ..read more

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 ..read more

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) de ..read more

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 ..read more

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.  ..read more

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; Portable Raised Toilet Seat  Non-Invasive Ventilation if you are ..read more

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 s ..read more