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].
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
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