Most ALS (amyotrophic lateral sclerosis) organizations focus on raising funds for a cure. That is commendable — but for those living with ALS now who don’t have the fortune of stable finances, a handicapped living place and an extended support system for care, an ALS Residence providing specialty care would be a godsend.

ALS is a progressive, degenerative motor neuron disease. As the disease progresses and the nerve cells break down, muscles no longer control movement. The pALS (person with ALS) becomes weaker and eventually cannot walk, move, eat or breathe on their own.

There is no specific test to determine ALS so it can take years by process of elimination to get a diagnosis. ALS is indiscriminate and affects both young and old, rich and poor, regardless of gender or ethnicity. There is no known cause or cure. Prognosis is two to five years after diagnosis, and is terminal. The pALS ends up trapped in a body that becomes paralyzed and in need of artificial ventilation. This results in 24/7 full-time care, which most families are unable to provide at home.

There are only two skilled-nursing facilities that have a respiratory care unit on Oahu and none on the neighbor islands, and these are geared for Alzheimer’s disease and dementia patients. Usually, there are three patients to a room with spaces divided only by a curtain. Ventilator machines, blood pressure and oxygen monitors, feeding machines for each patient are timed for individual needs and alarm intermittently day and night requiring staff attention when they are available. So, imagine lying in bed having to endure a cacophony of alarm noises and unable to speak or call for help. The pALS is essentially trapped in this nightmare.

Two states out of 50 have an ALS Residence “smart house” based on latest technology that allows pALS to control their environment, i.e., turning lights and fans on and off, opening and shutting doors, communicating with speech devices and computers, operating television sets and using power wheelchairs that can be operated through the latest up-to-date technology. Each pALS has his or her own room in a home-like inclusive environment, as opposed to the institutional models that currently exist.

Finding my brother vulnerable and homeless in the park in 2002 with mobility issues started us on a 20-year journey through the ramifications and challenges of an ALS diagnosis. Friends and family slowly disappeared when it became difficult to communicate and/or they wanted to remember him the way he used to be.

I helped establish the ALS Foundation of Hawaii with the vision of helping my brother and other pALS avoid the agony of what my brother sadly experienced being institutionalized in a skilled-nursing facility. An ALS Residence in Hawaii equipped with state-of-the-art technology would give more dignity and meaning to our local pALS and a way to stay connected, rather than isolated.

I know how compassionate the Hawaii community is. I am postulating people here will embrace this pono undertaking with us. We are working with a potential partner to operate the medical side of an ALS Residence while the three volunteer board members continue to bring ALS awareness and raise funding to get started.

May is ALS Awareness Month. I hope to enlighten our island community that Hawaii needs such an ALS Residence “smart house.” We are an archipelago that can unite in heart and spirit to malama for this marginalized population and provide more benevolent care of pALS to improve quality of life for them and their families.

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To learn more, see www.alsfoundationhawaii.org.

Katherine O’Connor is a board member/officer of ALS Foundation of Hawaii.