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Answering Your ALS Questions with Alisa Brownlee, ATP, CLIPP, CAPS, WSP

Each month, a member of the Chapter’s experienced care team answers questions about ALS and their role in supporting ALS families.

   

What are the most significant advances that you have seen regarding assistive technology to benefit people with ALS since you began providing solutions to the ALS community nearly 25 years ago?

The greatest advancement in technology has been the remarkable devices that have come out after the advent of the iPhone. Smart phones, tablets, Kindles, and other touch devices have enabled people with ALS and other disabilities to remain connected to family, friends, and their community. The advent of the iPhone enabled people with communication difficulties to type quickly and efficiently — for those old enough, remember how cumbersome and time consuming it was to text on a flip phone? The iPad with its larger screen allows users to have a larger screen that is easier to see. Apple designed their devices so that the user does not need experience in Windows to utilize the device. The iPad revolutionized communication devices as users can own a communication device and have a speech generating device in a matter of minutes. When Android tablet devices were released, app designers also created communication apps for this platform. There are now specialized stylus devices that enable users with disabilities to access a touch screen as well as other access methods such as gestures, head movement, and eye gaze.

A significant number of people with ALS will use eye gaze devices. When I first started in 1996, these devices cost over $25,000 and were not covered under insurance. They are now half that cost and covered under Medicare, Medicaid, and some private insurances.

How soon after being diagnosed should a person with ALS ask about Assistive Technology?

That would depend on what physical issues are prevalent after diagnosis. For example, a person with bulbar onset ALS will need assistance with communication first as opposed to those with no speech involvement. Clients that can still speak when diagnosed are encouraged to voice bank their voice for future use in a communication device should their speech become impaired. Voice banking is another area that has significantly changed since I started. It used to take a user 20+ hours to bank their voice. New technology allows a client to bank their voice in an hour or two.

After diagnosis, I encourage ALL people with ALS to reach out and schedule an appointment with me to discuss home adaptations. An individual may not need the modifications now, but planning the home for accessibility should be done early so the best decisions can be made regarding living conditions. Not all homes can accommodate the adaptations that are necessary when living at home with ALS and this information is important to know at the beginning of the ALS journey. I’ve done hundreds of virtual visits to discuss home accessibility and safety that have enabled families to modify their home so that a person with ALS can continue to live in their home safely. If you are interested in scheduling a virtual visit, email me at alisa@alsmidatlantic.org.

How does Assistive Technology benefit caregivers? 

Assistive technology significantly impacts people’s lives by helping them with tasks they struggle with and improving their quality of life. Technology allows caregivers more valuable time with their loved ones and lessens stress considerably.

Using assistive technology gives a person with a disability the independence to perform tasks themselves instead of asking a caregiver to do it for them. Consider how many times a person surfs through television channels or websites. Depending on a caregiver for this task would be burdensome and time consuming.

Assistive technology can keep a caregiver safe from injury. For example, by utilizing a Hoyer Lift for transfers, the caregiver can prevent back injuries. Use of augmentative communication systems enables the caregiver to understand what the person with ALS is saying or requesting. Call bells alert the caregiver that the person with ALS needs help.

What are some simple Assistive Technology items that you recommend to ALS families?

Letterboards – portable text-based or picture boards for rapid access communication

Go-Bags – emergency bags you keep next to a door and would grab in the event of an emergency – calling an ambulance, weather-based evacuation, etc. You can customize your Go-Bag and critical components include:

  • Copies of your insurance card
  • List of medications
  • Phone numbers for your doctors, home care agency, pharmacy, etc.
  • Information you want an ER team or evacuation center to know – i.e. don’t lay me flat (for those with breathing difficulties), do not give me medication orally (for those with feeding tubes), I communicate yes/no/maybe by__________
  • Letter or picture boards
  • Phone chargers and ear buds

Smart Speakers – Before the introduction of the Smart Speaker (Amazon Echo, Google Home, Apple HomePod), tuning a house into a smart home would cost thousands of dollars. Now, a person with a disability can have a smart home for a few hundred dollars. The ability to lock and unlock a door, answer an electronic doorbell, change television channels, listen to audiobooks, activate lights, fans, and control a thermostat can improve the quality of life for a person diagnosed with ALS.

Where do you see the future of Assistive Technology for ALS patients in the next five to ten years?

Increased use of artificial intelligence developed into assistive technologies. AI-powered speech recognition, natural language processing, and computer vision are enabling assistive devices to provide more accurate and seamless assistance. For individuals with mobility issues, AI-driven robotics are becoming increasingly sophisticated, allowing for greater mobility and independence, Additionally, AI-driven predictive text and communication tools are opening new avenues for communication and expression for those with speech or cognitive impairments. Wearable technology is not just a fashion statement; it’s a game-changer for assistive tech users. Smart glasses, haptic feedback wearables, and sensor-based devices are all enhancing the daily lives of individuals with disabilities. These wearables can provide real-time information, navigation assistance, and even help individuals interpret their surroundings.

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