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.Energy and time are focused on enjoying life as we know it. We don't want to look too far into the future or use precious energy to try out new equipment or learn new technology. It’s simpler to put it off. Some ALS families are reluctant to explore or embrace adaptations because this feels like conceding. For some, accepting a new device or adding a piece of equipment to the repositoryseems contrary to their mission to fight ALS with everything they have.
There are several understandable reasons for hesitancy in accepting new tools. So why do it?
At the Susan Mast ALS Foundation, we encourage our families to view acquiring new equipment as strategic decisions. By choosing to explore options, select what works for you, and spend time acclimating to new equipment, you are investing in yourself.
For example, learning how to use eye gaze technology can be frustrating or even intimidating. However, this technology can be life-changing as it opens avenues to connect with your world. Using that trilogymachinemay seem intrusive at first but can preserve precious energy and make it possible to spend quality time with friends and family.
If you or your loved one are struggling with an adaptation or feeling unmotivated to learn new equipment and skills, take time to reflect on the benefits of the adaptation. Will this device foster independence? Increase mobility and safety? Will this change help you preserve energy to use for what’s important to you?
We recognize that this continuing adaptation is one of the devastating aspects of ALS and it’s not our intent to minimize this. We simply want to encourage you as you take on these challenges.