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

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

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 ex ..read more

ALS is a relentlessly demanding disease.  It requires ongoing adaptations from patients, caregivers, and family members.    At times, it seems that you’ve just settled in to a new reality—a piece of equipment, a change in pace, another routine—when things change again.  These ongoing adjustments can be physically draining, mentally exhausting, and emotionally taxing for everyone involved.      It can be difficult to juggle preparing for symptom progression while trying to savor the present.  ..read more

Planning ahead for communication can help increase safety and control for pALS with speech impairment. Do you have your safety and emergency plans ready? Do you need to compile your safety toolkit?   Alerting  Ensure that you have reliable ways to get the attention of family/caregivers that are in your home and family/caregivers or medical/emergency responders outside of the home. Your current communication methods, motor skills, and lifestyle/routines may dictate which style of call bell and medical alert system you choose to use, and you may need to a ..read more

by Emily Brechting, Ph.D. ​ For many of us, ALS is something we think about abstractly with little awareness of the realities of ALS.  Perhaps we call to mind famous athletes like Lou Gehrig and Steve Gleason or the remarkable scientist Stephen Hawking.  But for those in the ALS community, that abstract concept becomes concrete when the diagnosis is given to us or someone we love.     For me, ALS became personal four years ago when my friend Scott received the diagnosis.  An avid distance runner, his was experiencing an odd cluster of symptoms initially ..read more

June is National Safety Month and I want to touch on safety in your homes and Severe Weather safety.    PLEASE BE PROACTIVE AND NOT REACTIVE!    Safety at Home -   Barrier Free – Remove any rugs, tables etc. that can be possible trip hazards.  Bathroom – Zero entry shower, easy toilet access for Hoyer Lift and Power Wheelchair.  Doors – To access rooms with a Hoyer Lift and Power Wheelchair, doors will need to be 36” wide.  Floors – Consider hard flooring versus carpet as it is difficult to drive a Hoyer Lift and/or powerchair over carpet.&nb ..read more

by Pam Van Vliet, Care Services Manager Spring has Sprung – we happily see all the new growth popping up all around us.  This is a great time for pALS and families to revisit your needs and what additional support you may need.  Monthly support groups are a great way to grow in your knowledge of what is available from SMAF and learn from others on how they maneuver around the obstacles of living with ALS. A healthy support system includes a group who can relate to your circumstances. Other benefits of meeting with a support group: Feeling less lonely, i ..read more