ALS is a rare disease ― only about 5 in 100,000 people will develop it ― but to many families in Hawaii dealing with other chronic illnesses, what patients with ALS are grappling with is familiar and includes the same healthcare and long-term care hurdles.
This three-part series helps tell the story of those living with ALS in Hawaii and those advocating for better care.
Divina Robillard was 29 when she got married to the love of her life.
And that life was good. Until Britt Robillard’s diagnosis, just two years into their marriage.
The doctors said the strange symptoms he’d been exhibiting, including weakness in his hands, were consistent with ALS ― a progressive disease that often renders people incapable of moving and eventually makes them a prisoner inside their own bodies.
“Welcome to a ‘Medicare Moment with Martha.’”
There’s a reason for the nickname ― “Medicare Martha” ― and why she has a radio show syndicated in 12 states.
Because people have questions and lots of them.
That includes ALS patients and their loved ones, who are facing a progressive disease that often renders people prisoners in their own bodies and are calling for action to provide more options long-term care. Grappling with the condition itself is difficult enough, but families also face additional challenges as they try to navigate the health care and health insurance systems.
Risa Fuimaono was diagnosed with ALS nearly 14 years ago.
He can’t move his body, uses a computer to speak, and relies on his family for basic needs.
His wife is his caregiver, but his mind is healthy.
“Sitting on a chair or laying on a bed, doing nothing is harder than you can imagine,” he said, on a recent day.
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