MARLBORO, N.J. — There is no official test for ALS, also known as Lou Gehrig’s disease. There's just a series of seemingly never-ending doctor visits that sadly embrace the process of elimination.
There is no other option.
And while a patient's fully functioning mind watches helplessly, their body deteriorates around it.
Sam Jundef, of Marlboro, New Jersey, was diagnosed with ALS four years ago, right before his 40th birthday. He was a strapping, athletic husband and father of two who now can no longer move, speak or breathe on his own.
"My symptoms are worst right when I wake up," he said. "A horrible feeling of useless adrenaline and spasms all over my body."
Jundef uses a tablet that tracks his eye movements, as he tediously selects each letter to describe the intense physical pain he struggles with daily.
But relief is accessible through legally obtained medical marijuana.
"The vapor goes through the tube and then we have to take out his trach," his wife Jessica said.
It's a crudely constructed vaping system that involves disconnecting Jundef's ventilator.
"We're manually breathing for him, but if you can look at th tubing, you see what kind of residue is going through," Jessica said. "So we're getting a lot of foreign objects."
And infections -- lots of them.
"I seem to be on antibiotics for every other week," Jundef said.
It's why the Jundefs are pushing so hard for access to medical marijuana transdermal, or skin patches. Unlike vapor or topical skin oils, patches deliver pain relief directly to Jundef's bloodstream and thus to his entire body.
"He's 43 years old. He can't walk. He can't talk. He can't eat. He can't breathe on his own and, like, why can't we provide things for him that are going to make his life easier?" Jessica said.
While marijuana skin patches are legal and readily available in other states, they were banned in New Jersey under former Gov. Chris Christie's then-restrictive medical marijuana program.
But that soon may change thanks to Christie's successor Gov. Phil Murphy.
"Our goal must be to have a program that is moderinzed, is compassionate, that puts the needs of the patients first and respects the decisions of doctors and the medical community," Murphy said in a January news conference.
Three days before PIX11 News interviewed the Jundefs, we reached out to Murphy’s office and the state Health Department to request policy information and speak directly with the governor.
Then, the day before we sat down with the Jundefs, Jessica received an unexpected call from Jeff Brown, the newly appointed head of the state’s medical marijuana program.
He promised help.
She said she was "shocked. Because they were like, 'We tracked you down.'"
Brown, the assistant health commissioner, put Jessica in touch with Andrew Zaleski, who works at one New Jersey’s dispensaries.
Zaleski is hiring chemists to manufacture a new legal marijuana skin patch, all with the state’s blessing.
It would appear the prospects of increased marijuana skin patch availability are sky high.
When asked if this is this the kind of action she’s been looking for, Jessica said:
"Absolutely. I'm not here to start a revolution. I just want my husband to be happy. I was frustrated. Why should my husband, who has ALS, who's dying, whose every day is precious, why should he have to suffer a minute?"
Jundef, his mind and intellect fully intact, said:
"This is all about quality of life since there is no cure for ALS, a terminal disease with a short life expectancy."