LIVING with ALS: Technological Advances for People Living with ALS

Many have asked me about the technology I use to maintain my independence. I'm truly inspired by the technological advancements in the ALS space, both current and future. Despite the lack of a cure, these significant technological advancements have been made to empower me and other ALS patients, significantly enhancing our quality of life. These innovations span various domains, including communication, mobility, and daily living, offering new ways to maintain independence and well-being.

Communication Technologies

One of the most critical challenges for ALS patients is the loss of speech. As the disease progresses, traditional verbal communication becomes increasingly difficult. However, several assistive technologies (ATs) have been developed to address this issue:

1. Augmentative and Alternative Communication (AAC):

  - Eye-tracking devices: These devices (I use a Tobii Dynavox) have been a game-changer. They allow me to control a computer or communication device using eye movements, enabling me to type messages or select pre-programmed phrases [1] [4]. Apple just announced eye tracking in iOS18. I’m excited to see if this will bring Apple back to the eye-tracking race. I prefer Apple products, but Tobii Dynavox is Windows-based, and I’m forced to use an Android phone for texting. These devices have improved not only my communication but also my overall independence and well-being.

  - Using your eyes to control your wheelchair: Software, like LifeDrive or AbilityDrive, allows ALS patients to drive (or control) their wheelchairs using only their eyes. It gives me a sense of independence again! I've been testing LifeDrive for some time. You may have seen videos of me driving on Facebook. If you haven't, look me up on Facebook. 

   - Text-to-Speech Software: This software converts typed text into spoken words, allowing patients to communicate verbally through a synthesized voice [4].

2. Message and Voice Banking:

   - Message Banking: Patients record important messages and phrases in their own voice, which can be played back later using a communication device [2].

   - Voice Banking: Patients record samples of their natural voice to create a custom synthesized voice for future use, preserving their unique vocal identity. This personalization aspect of the technology is particularly significant, as it allows patients to maintain a strong connection to their own voice and identity [2].

  - AI voice technology: New AI voice technologies allow users like me to create their natural voices using previous videos or voice recordings. The new AI voice has intonation and emotions and doesn’t sound like a computer-generated voice. I’m excited about my new Eleven Labs AI voice because it sounds like me!

Mobility and Daily Living Aids

Maintaining mobility and independence in daily activities is crucial for ALS patients. Various adaptive equipment and technologies have been developed to support these needs:

1. Mobility Aids:

   - Walkers, Canes, and Wheelchairs: These aids help patients move safely and independently, reducing the risk of falls and injuries [3]. Since I can no longer walk, I use a PerMobil power wheelchair for my big butt!

   - Self-Transfer Boards and Grab Bars: These tools assist patients in transferring from one position to another, such as from a bed to a wheelchair, enhancing their ability to maneuver independently [3]. While I don’t transfer anymore, we usually use a shower chair to transfer me. Imagine using a transfer board for a large guy like me. I think the caregivers would be challenged!

2. Assistive Daily Living Tools:

   - Lifts: We have ceiling lifts (provided by 101 Mobility) in the Roswell and Auburn houses. We also use a Hoyer lift when we’re traveling. These lifts allow Carol and my caregivers safely transfer my big ass.

   - Shower Chairs: These aids ensure safety and comfort during bathing, allowing my caregivers to maintain my hygiene.

  - Ventilators: I use a VOCSN ventilator, which is an all-in-one ventilator. Typically, you must carry many extra devices, such as a cough assist machine, a nebulizer, a suction machine, and an oxygen concentrator. All of these have separate plugs and chargers. You must have backups for all these devices. Imagine us going to games with all these devices! Fortunately, we have the VOCSN! VOCSN stands for ventilator, oxygen concentrator, cough, suction, and nebulizer. Because it’s an all-in-one device, we must carry a backup VOCSN instead of all these extra devices and their backups.

  - Connected devices: I can control the TV, lights, environment, and shades from my eye-gaze computer. I don’t have to wait for Carol or my caregivers to change the TV station or turn on the lights. Much like your smartphone, I can control many things from my computer.

Telemedicine and Remote Monitoring

The COVID-19 pandemic accelerated the adoption of telemedicine, which has proven particularly beneficial for ALS patients:

1. Teleconsultations: Remote consultations with healthcare providers reduce the need for travel, which can be challenging for me and Carol. This approach also minimizes the risk of nosocomial infections (I don't even know what that means!) [1] [6].

2. Telemonitoring: Continuous remote monitoring of respiratory function, nutritional status, and other vital parameters helps in timely intervention and better disease management [1] [6].

 Emerging Technologies

Several cutting-edge technologies are being explored to further enhance the quality of life for ALS patients:

1. Robotics: Robotic devices can assist with physical tasks, such as feeding and mobility, providing additional support for daily activities [1] [6].

2. Virtual Reality (VR): VR can offer cognitive stimulation and recreational activities, helping patients stay mentally active and engaged [1].

3. Artificial Intelligence (AI): AI-powered systems can improve the functionality of communication devices and other assistive technologies, making them more intuitive and user-friendly [1].

4. Brain-Computer Interfaces (BCIs): BCIs detect brain signals and translate them into commands for communication devices, providing an alternative for those who cannot use eye-tracking [1] [4]. I will write a separate blog on BCIs soon.

Conclusion

Technological advancements for ALS patients are transforming how I live, communicate, and interact with their environment. From sophisticated communication aids to practical daily living tools, these innovations empower me to maintain my independence and improve my quality of life. As research and development continue, the future holds even more promise for those living with ALS, offering hope and enhanced support through technology.

I'm grateful to all the scientists and researchers who have dedicated their lives to finding innovative solutions for me and my fellow ALS people LIVING with ALS. Thank you, Thank you, Thank you! 

 

Citations:

 [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7403097/

 [2] https://theadultspeechtherapyworkbook.com/als-speech-therapy/

 [3] https://www.alimed.com/als-blog/

 [4] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9090469/

 [5] https://www.alshf.org/assistive-technology-1

 [6] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8776511/

 [7] https://www.als-mnd.org/support-for-pals-cals/clinical-care/speech-therapy-and-communication/

 [8] https://lesturnerals.org/als-mobility-guide/

 [9] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096454/

 [10] https://www.liftseat.com/advancements-als-research-and-assistive-technology-give-hope-brighter-future

 [11] https://alsnewstoday.com/aids-and-adaptations/

 [12] https://amyandpals.com/communication-solutions-gallery/

 [13] https://www.medicaldevice-network.com/features/the-future-of-als-devices-next-gen-assistive-technology-aims-to-give-patients-a-voice/

 [14] https://www.youralsguide.com/mobility-and-als.html

 [15] https://www.childrenshospital.org/programs/als-augmentative-communication-program/protocol-assessment-considerations/voice-preservation/speech-generating-devices

 [16] https://www.als-mnd.org/support-for-pals-cals/clinical-care/technology/

 [17] https://www.youralsguide.com/mobility.html

 [18] https://teamgleason.org/pals-resource/communication-devices/

 [19] https://www.ochsner.org/shop/home-medical-equipment-hme-total-health-solutions-ths/products-for-people-with-als-lou-gehrigs-disease

 [20] https://www.youralsguide.com/communication.html