QUALITY OF LIFEHelp ALS patients get the respiratory care need.
Initiative One: The ALS Living Center
ALS is considered fatal, but this is not necessarily so for those who accept the terms imposed by ALS for continued life, including:
- Increasing dependence on others as paralysis progresses
- Use of communication aids as the ability to speak is lost
- Placement of a feeding tube as the ability to swallow is lost
- Respiratory support, progressing to tracheotomy and ventilator-dependence as the ability to breathe is lost
A long, productive life with ALS is possible. Sadly though, few ALS patients choose to live with their disease long-term. There are many reasons for this, but perhaps the biggest is the heavy toll that caring for an ALS patient takes on families. Many are simply overwhelmed by the challenge, and patients invariably dread becoming a burden on their loved ones.
We want to tip the scales in favor of ALS patients and their families by creating an ALS Living Center in the Dallas area modeled after those already successfully operating near Boston and in New Orleans. A fully-automated, vent-ready, skilled nursing residence dedicated to the specific needs of ALS patients is a challenging but achievable goal.
We look forward to the day when a cure is found and an ALS Living Center is no longer needed. Until then, helping ALS patients live full and enjoyable lives is the best way to truly make a difference for those who must face this disease today. It is simply the right thing to do.
Initiative Two: Respiratory Care Services
For those with ALS who live with a tracheostomy and mechanical ventilation, daily ALS-specific respiratory care provided by a qualified specialist is required to keep the lungs clear. Such care improves both quality of life and longevity by dramatically reducing the incidence of pneumonia and consequent hospitalization.
While Medicare/Medicaid and most insurance companies will pay for the equipment, at-home respiratory care by a qualified specialist is rarely covered, placing a very heavy financial burden on the patient and family.
Our Respiratory Care Initiative will help patients pay for at-home respiratory care from approved providers when such care is not covered. We will also work with insurance payers, including Medicare and Medicaid, to help them understand the need for at-home respiratory care and the financial benefit of covering such services.
Initiative Three: Speech for the Speechless
ALS can take away the ability to talk when it affects the muscles responsible for speech. Computer-generated speech can restore the ability to communicate when this happens, but the problem is further complicated when ALS has also paralyzed one’s limbs, making typing and mouse-control difficult or impossible.
The good news is that there are widely-available tools - such as eye-gaze - that can restore one’s ability to access a computer when this happens, and computers open the door to more than just speech. In addition to email, texting and the internet, a computer-generated voice can provide significant control of one’s home environment through available devices such as Alexa and Siri. Fortunately, the equipment that makes this possible is covered by most insurance. In Texas, residents also have state-provided access to such assistive communication devices.
This is all good, but not everyone embraces the technology, even when it is available, and even considering the potential it represents for a better life. The reasons for this are many, but they include the fact that the equipment itself can be intimidating, especially for someone who has made limited use of computers in their life before ALS. Sometimes, people just need a helping hand to get acquainted with the technology and to spark the motivation needed to incorporate it into their life.
Our Speech for the Speechless Initiative aims to make independent tech support available to those living with ALS in the Dallas area and struggling with their communication needs. Jeela Tamrakar is an experienced ALS caregiver with extensive skill in providing one-on-one assistance with communication devices, including help with customization of the software that can often make the difference in helping someone make full use of this technology, which offers vast improvements to quality of life for the patient, caregivers, family – quite literally everyone involved. She is offering her services in the Dallas area for a nominal cost. For those who cannot afford it, our initiative can provide financial assistance.