Editor’s note: This is the first in a series on Lou Gehrig’s Disease — also known as ALS — detailing its effects on its victims and their families in the Greater Manteca Area with May being ALS month.)
Shaun and Don Ferraro, both 54, are in the fight of their lives since Don was diagnosed with ALS last year.
After almost losing their home without their past income as they were forced to walk away from their jobs, they soon found out how unpredictable the disease can be along with learning it comes with a life sentence of two to five years.
Some have lived as long as 17 years but that has been a rare exception. Currently there are 19 ALS patients living in San Joaquin County and another 213 in Sacramento County that serves the smaller counties of Colusa, Yuba, Sutter, El Dorado, Placer, Yolo, Nevada, Sierra, Siskiyou, Mono, Trinity, Shasta, Tehama, Plumas, Butte, Glenn, Calaveras, Tuolumne, Alpine, Sacramento and San Joaquin.
Don was a commercial truck driver and Shaun a community service officer (CSO) for the Manteca Police Department. A CSO officer are the ones most citizens contact, freeing regular sworn officers when making a complaint.
Several years ago Shaun was struck on the street by an errant motorist as she was investigating a traffic collision on West North Street in Manteca — spending several days in the hospital. Working as a CSO and evidence technician, Shaun said she had the perfect job and was torn when she had to leave the ranks, but her husband came first before anything else, she said. They have lost their two cars because of a lack of income and have no way to transport Don to the Mother Lode communities — an area that he has loved all his life and seems to ease his frustrations.
They are hoping to find a way to buy a handicapped van and outfit it to carry his motorized wheelchair and take along the grandchildren to ease the burden of time. The wheelchair was finally delivered this past week. There are only one to two individuals out of every 100,000 who contract ALS in the U.S., however it spikes in agricultural areas with the cause unknown at this time.
Ferraro explained: ”ALS is a sadistic killer that can attack anyone, shutting down your arms, legs, hands, mouth and every part of your body except your brain which is left untouched to ponder how such a brutal disease could be so ignored and underfunded.”
She challenged people to imagine not being able to button your shirt, eat your meals with a utensil, go to the bathroom on your own, take a step or even speak and breathe.
”This is the harsh reality of ALS. It robs you of all of these daily necessities we take for granted and more. There is no cure for this underfunded, horrific and fatal disease, she said. However, there are ongoing research trials involving the use of the patient’s own stem cells that might eventually turn it around,” she said. But, that takes greater research and research funding that has been slow in coming, she added.
Don Ferraro was diagnosed in April of 2015 but Shaun first noticed that something wasn’t right in 2008 seeing that her husband’s walking pattern had changed. “I noticed a slight limp on his right side. He didn’t notice a difference in the beginning but after a while I convinced others that something wasn’t right. About a year after that my husband started to realize that something was wrong. He started having trouble with his ankle and his feet. Don also noticed his right knee was starting to feel as if it was getting numb,” she recalled.
Shaun added that doctors attributed all of his symptoms and concerns to his profession as a truck driver and to his size. After numerous CT scans -- to rule out the possibility of a stroke — came Electro Magnetic tests, spinal taps, visits to neurologists, physical therapists, podiatrists, spinal specialists and primary care physicians.
”Don went to three different neurologists before one would make the devastating diagnosis — with tears in her eyes — she confirmed what others wouldn’t. ‘I am sorry but you have ALS,’” she choked. On a clarification of the disease Shaun continued, “ALS is not something that a simple test can confirm. No blood test, no X-ray, no CT scan can determine this illness. My husband had to go through electromagnetic testing several times with needles placed in various locations in his legs, arms, his neck, and even in his tongue. Knowing what the doctors are testing for and knowing that none of them want to be the one who gives you the final diagnosis is scary,” she said. What bothered her husband most as, well as herself. was learning that eventually he would become a prisoner within his own body — not able to walk, talk or even hug the ones he loves the most.
Alive in a
“You are very much alive inside a ‘dead body,’” she said. “Take a moment and try to imagine what it would be like if you were unable to move your limbs, even for the basic self-care tasks such as wiping away a tear, scratching your nose and even to be able to communicate, to tell someone thank you or to tell someone you love them.”
Shaun — who is at her husband’s beckon call 24/7— said that doctors can’t tell their ALS patients just how long they will have before the disease robs them of their ability to breathe without assistance, or the way it makes a person feel helpless as they are watched by family members with sadness in their eyes and not able to help.
Shaun had opened a gofundme.com account for anyone in Manteca who could lessen their pain in making ends meet. The account to use in making a donation for the Ferraros is www.gofundme.com/prayingforpapa.
To contact Glenn Kahl email firstname.lastname@example.org.