We saw this great article from the ALS Association and knew we could add to the conversation surrounding ALS. People with ALS can lose the ability to speak, but making sure they stay connected to their family and friends is something that we’re passionate about. Our speech-generating devices allow for faster speed and less fatigue so an ALS user can communicate in a more streamlined way.
The ALS Association mapped out ways to help families impacted with ALS, and we wanted to share some opportunities to use AAC to help families as well.
Stay in Touch: When a family is affected by ALS a call or text could mean everything. If the ALS patient is using an AAC device, you could set up a page with friends and family’s pictures and their phone numbers, so the user is able to reach out whenever they want. With the NeuroNode Trilogy, it’s possible to connect a communication device to a phone for independent calling or texting. Allowing the person to stay as independent as possible while still interacting with their support system means a lot.
Include the Person Living with ALS in Activities: It can be isolating to live with ALS, so make adjustments to include the person living with ALS in activities. Schedule extra time so there’s no rushing, and research if the place you’re going has handicap accessibility. Make sure they use their communication device to participate.
Be Specific When Offering Help: Really listen to the user or caregiver to see what they need the most. The user, if using a speech generating device, might be a little slower at first communicating their wants and needs, so really listen to see how you can help make their life easier.
Learn about ALS and AAC: There are lots of great resources available from the ALS Association to help learn about ALS and augmentative and alternative communication. Our local reps are also SLPs or biomedical engineers and happy to answer any questions you might have.
Keep all Family Members in Mind: Communicate with kids in the family and see how they could be involved with learning the new AAC device. Set up some games that the user and a child could play together using their communication device. Interacting with family can be key.
It can be hard to know how to help a family when someone they know is diagnosed with ALS, but communicating with the patient and family about their specific needs and the little things you can do to improve their lives can make all the difference.
For more information about Control Bionics’ communication systems, check out our products or contact us.