Palo Altan with ALS and his mother vouch to comparison their circumstances
July 27, 2018 - als
• View all sections of this story with some-more photos, a documentary film, contribution on ALS and some-more on a Atavist page.
The illness that will eventually finish Jon Ferraiolo’s life showed adult initial in his throat and his tongue. Recovering from a delayed cold during a time, he attributed his problems with swallowing and his slurred debate to that typical ailment.
But 15 months later, in Jul 2014, a alloy gave Ferraiolo a harmful diagnosis: amyotrophic parallel sclerosis (ALS), ordinarily called Lou Gehrig’s disease. The on-going neurodegenerative illness affects haughtiness cells in a mind and a spinal cord, that lead muscles to stop operative and to atrophy. After his debate became slurred, he mislaid use of his fingers, hands, arms and legs.
Eventually, he will stop breathing.
But a illness does not impact a module engineer’s mind. He is entirely wakeful of all around him.
More than 20,000 Americans have ALS during any given time, according to a ALS Association. Famed fanciful physicist Stephen Hawking died of a illness on Mar 14. Other critical persons who were cheerless embody ball good Gehrig, pitcher Jim “Catfish” Hunter, U.S. Senator Jacob Javits, actor David Niven, thespian Dennis Day and jazz musician Charles Mingus, to name a few.
“He has a flattering terrible disease. For a many part, he faces it with bravery and dignity,” his wife, Karen Kang, pronounced recently in their Palo Alto home.
In fact, ALS isn’t interlude Ferraiolo, 64, from heading a full life. Not meaningful either he has months or years left, he and Kang motionless to comparison ALS as best they could. They have found acceptance, assent and happiness, they said. Life is noted not by grind though by milestones: a birth of a grandson; a weddings of dual daughters; a announcement of a book that he hopes will change a world; visits and celebrations with friends. With a assistance of technology, caregivers, family and friends, Ferraiolo is still doing what he wants to do and pronounced he enjoys any day.
Ferraiolo forms his difference solemnly now, regulating his exhale to assistance awaken out a sound.
“My fun about ALS is: Surrender your honour and dignity. After that it’s flattering easy,” he said.
• Hear Jon Ferraiolo and Karen Kang tell their story in their possess difference in a documentary film by Weekly Photographer/Videographer Veronica Weber here.
Getting a diagnosis
When symptoms started to perceptible in 2013, a integrate went from dilettante to dilettante seeking an answer — an ear-nose-and-throat physician, a few neurologists. One alloy suspicion Ferraiolo had gastric reflux.
They even went to a singing clergyman when someone suggested that a mechanics of singing and exhale control would assistance him to plan his voice.
“We were on a furious crow chase,” Ferraiolo said.
A neurologist specializing in neuromuscular diseases during Stanford University Medical Center’s Neurosciences Center delivered a diagnosis.
“She did serve contrast and sat us down and said, ‘Has anyone talked to we about ALS?'” Kang recalled.
“We usually looked during any other. And we pronounced to her, ‘How certain are we of this?’ And she said, ‘About 70 percent.’
“At that point, I’m looking during Jon and I’m perplexing to contend (to myself), ‘Don’t tumble to pieces. Don’t start good and pathetic given Jon will consider that there is no hope, and there’s a 30 percent possibility that this diagnosis isn’t right,'” she said.
When they got home, they let a diagnosis penetrate in.
“We usually sat together holding hands and crying. It was unequivocally a unequivocally harmful diagnosis,” Kang said. “They didn’t tell us anything about what to expect. We had seen a film about Lou Gehrig, so we arrange of knew what happened, and we review something online about it.
“It was usually unequivocally scary. How are we going to conduct this? What’s going to happen? What is life going to be like?” she said.
Ferraiolo removed deliberation how a illness would impact Kang and their children.
“For me, it was many easier than for you. we know things occur — when we get comparison things happen. My sheet was ALS. Other people get cancer or Alzheimer’s. we thought, ‘Well, I’ve had 60 years of good luck.’ we disturbed some-more about a women in my family than me. And they take it many harder.”
Kang had already designed a 40th marriage anniversary outing to France for that September. They wanted to go to a place where they met during a Stanford-in-France overseas-study module and to revisit a cow pasture where they had camped out during their initial outing together. So they did. Ferraiolo could still transport 10 miles a day afterwards and lift his luggage, she said.
A year later, bringing 3 pints of coconut ice cream home on his bicycle, Ferraiolo mislaid his change and did a faceplant on a pavement. The illness was progressing.
“The voice went first. The second thing to go was my thumbs. we usually had 4 fingers operative on any hand. Then a arms went and now a legs,” pronounced Ferraiolo, who’s in a wheelchair.
He’s means to stagger and pierce his chair regulating specialized headgear activated by a sides of his head.
“It’s been glacial, unequivocally slow. Three and a half years after a diagnosis, it’s been a flattering linear decline,” he added.
“He had a delayed decrease and afterwards stability, and afterwards it felt like he fell off a cliff” in May 2016, Kang said. Though he’d been compensating for a detriment of engine control in some muscles by regulating others, eventually those too gave out.
Suddenly, he couldn’t get on a Pilates apparatus during his private sessions and he couldn’t hoop their unchanging transport to Starbucks. He had to quit driving.
“I mislaid a whole garland of functioning clearly quickly,” Ferraiolo said.
Life before ALS
When they met during a Stanford-in-France module in Sep 1974, Kang was a 19-year-old Mills College tyro majoring in English and Ferraiolo was a Stanford University computer-science undergraduate. She grew adult on a plantation in Gresham, Oregon; he was carried in relations lavishness in suburban Chicago, a son of a doctor.
Their worldviews were primarily as opposite as their backgrounds.
“Jon and we would disagree about life truth and attitude. I’ve always been a balmy chairman with a certain attitude, and when we met Jon he had kind of like this darker side to him. He pronounced he was kind of disposed to depression, and he pronounced it wasn’t good to be happy all of a time or to try to be happy all a time.”
Ferraiolo suspicion that being softly vexed helped rage stronger emotions. It meant one didn’t get too vehement about things.
“You wouldn’t get too depressed. You could kind of control where we were,” Kang recalled.
“I suspicion that was a many absurd life philosophy,” she continued. “I said, ‘It’s many improved to be happy, so since don’t we try for happiness? And there’s so many to be happy for, and there’s so many to be beholden for. Depression should not be a order though a exception.'”
They could not have famous how many her approach of meditative would make them volatile when he grown ALS.
Although they were descending in adore in France, a attribute didn’t last. She returned to a beloved in a States; he eventually reunited with an aged girlfriend.
“But she pennyless adult with me. we couldn’t stop articulate about Karen,” he said.
In tumble 1975, they met again in Woodside during an overseas-program reunion. Much to her surprise, Ferraiolo came with a new attitude.
“He had found a approach to be happy and to like himself or adore himself, and we felt like ‘We’re dual equals.’ Before, when we were in France we felt like he was contingent on me for his happiness, and we told him we wasn’t peaceful to take that weight on. It would meant that we could never be sad,” she said.
It was a unwavering decision, he said: “I listened to her evidence and resolved that she was right. It done no clarity to be unhappy.”
They married and had 3 daughters, Nicole, Natalie and Allison, stuffing their lives with soccer games and violation adult kin rivalries.
“Jon was a miraculous father and a miraculous father and partner. He altered diapers and helped prepare and clean,” Kang said.
They also had perfectionist careers: she as a branding strategist for high-powered Silicon Valley people; he as a module architect, engineering manager and product manager on Adobe products such as Illustrator, Acrobat and Premiere. He became famous for building a Precision Graphics Markup Language, a strange Scalable Vector Graphics denunciation selection (a customary for a non-blurry content and graphics), and as a vital writer to a EPUB customary for digital books.
By a time he was diagnosed with ALS, his debate problems were creation prolonged phone conversations during his pursuit during IBM impossible. He went on incapacity as shortly as he perceived a diagnosis and started holding caring of his affairs.
Living with a disease
Kang pulled leg warmers over Ferraiolo’s feet and adult his calves as he lay stationary in bed on a balmy Mar morning.
“These are a leg warmers that dancers use. Like in FlashDance. We need to get one of your sweatshirts and I’ll cut it” to have that voluptuous off-shoulder look, she said.
“I’m a maniac,” he replied.
“You’re a maniac? You’re going to do that dance?” she asked.
She had combined an electronic doorway carillon to an ankle slap that Ferraiolo wears, so he can ring a bell regulating his other heel whenever he needs help.
Kang incited him on his side and put a cloth rope underneath her father to lift him from a bed. Pepe, their chocolate-colored small poodle, barked loudly.
“I’m usually during everyone’s beck and call,” she said, smiling. “It’s alright. It’s alright, I’m used to it.”
The automatic lift, done like an inverted U with handles, straps and a rope seat, whirred over a bed. The device carried Ferraiolo, who is 5-feet-8-inches high and weighs 180 pounds. The steel arm swung him to his wheelchair and a lowered him into a seat. Kang unhooked a rope and kindly slipped it out from underneath him.
“Do we wish your frock or shorts?” she asked. His sister, Bobbe, done a kilt, that allows him to pierce some-more openly than if he is wearing pants.
Kang wheeled Ferraiolo to a door, now dressed and with Pepe on his lap.
“You know, between Jon and Pepe, they keep me going,” she said, attaching a control to a dog as they prepared for a walk. Pepe whined anxiously and bolted for a door, holding a lead. Kang guided a wheelchair down a transport in their Duveneck/St. Francis neighborhood.
Construction workers renovating a circuitously residence banged aloud as a integrate strolled past sprouting landscaping in a varicoloured morning light.
Kang struggled to keep a wheelchair turn around a tilted driveway. Curves are a hardest.
“There’s one thing I’d like people to know — that they park too distant adult on a sidewalk. Especially with a motorized wheelchair, we can’t get through,” she said.
She stopped momentarily. The tulip magnolia petals had fallen, littering a belligerent around a wheelchair with pinkish blossoms.
Ferraiolo took in a beauty of a plants and flowers as a integrate dull a curve. He shouted a William Wordsworth poem, “I Wandered Lonely as a Cloud,” with Kang fasten him, and they smiled.
“I wandered waste as a cloud
That floats on high o’er vales and hills,
When all during once we saw a crowd,
A horde of garden daffodils;
Beside a lake, underneath a trees,
Fluttering and dancing in a breeze.”
As ALS has done it formidable for him to travel, he has had to rest some-more and some-more on his “inward eye” and his memories to give him joy, Kang pronounced later, recalling a final verse:
“For oft, when on my cot we lie
In empty or in meditative mood,
They peep on that central eye
Which is a tranquillity of solitude;
And afterwards my heart with pleasure fills,
And dances with a daffodils.”
The integrate used to go to Edgewood Plaza Shopping Center for coffee, though Kang doesn’t like to splash it in front of Ferraiolo anymore. He can no longer take liquids by mouth, and he misses a ambience of coffee, he said.
One fun they’ve combined to their life given a diagnosis is Pepe, who is partial of Ferraiolo’s therapy, lifting spirits and bestowing affection. Kang calls Pepe their engineer dog: She asked a breeder for a pet with characteristics that would element Ferraiolo’s condition, and as a result, Pepe is clever adequate to burst on his lap, is peaceful adequate to be a good path dog and possesses a sharp-witted personality.
“Pepe has been such a godsend. He wakes Jon adult in a morning with kisses,” she said.
Back during a house, Kang donned medical gloves. She brought out dual cosmetic bags containing solutions of Radicava, a drug that can assistance some ALS patients by negligence their symptoms. Ferraiolo started a treatments in December, late after a conflict of his disease, so it isn’t famous what advantages he will derive.
He pronounced he feels reduction tired, his respirating isn’t as formidable and he isn’t twitching as many all over given he has started a Radicava.
“I used to have twitching in my hands all of a time. You could feel your hands moving, though it was a disconnect. You couldn’t stop a tremors,” he said.
He mislaid 25 pounds in a year given of them, he added.
Kang straightened tubing and extrinsic it into one of a bags. She hung it from a stand, adjusting a season upsurge as Ferraiolo watched television. She trustworthy a line to a pier embedded in his top chest. It will take about 20 mins for a diagnosis to finish, and afterwards they’ll start a second bag.
Meanwhile, she attended to another procession to transparent his lungs of mucus. Setting adult a nebulizer that can pull atmosphere low into his lungs, she filled a cosmetic fountainhead in a face facade with drugs and placed a facade over his nose and mouth. The nebulizer appurtenance whirred, swelling a medicine in a excellent obscurity as he breathed, opening and relaxing Ferraiolo’s lungs.
It was also time to eat. Ferraiolo can't splash liquids, so Kang feeds him medicines and additional nutritive supplements by a pier embedded in his stomach. She dejected a drugs and combined glass to another container, stirring to dissolve. She carried Ferraiolo’s shirt to entrance a port.
“It’s usually a small symbol like this. You usually open it,” she explained.
She trustworthy a tube and used a large, cylindrical syringe to flush his line with water. She afterwards poured a drugs and nutritive supplement, a thick, pallid, milkshake-like substance, into a syringe. The glass flowed directly into his stomach.
“Chocolate cake? Baked salmon? What are we eating?” she said, as a glass disappeared.
“I don’t ambience or even feel it,” he said.
They keep CNN on with sealed captions given a nebulizer drowns out a sound. When a device finished dispensing a medication, she bending Ferraiolo adult to a cough-assist machine. It exercises his lungs to make them stronger by pulling in atmosphere and helps diffuse mucus. He exhaled aloud into a mask, and Kang totalled a volume of bid on a meter. It tells her if he is assembly targets for gripping his lungs strong.
At night he wears a ventilator, a non-invasive device that pushes atmosphere in and out of his lungs.
“It waves my diaphragm muscles. we get brief of exhale during night if we don’t have it. we nap better. we used to arise adult many times in a night given my respirating would stop,” he said.
Recently, they were means to supplement a mechanism shade above his bed so he can be entertained while on his back. He used to arise adult in a night with zero to do for hours, incompetent to pierce or get adult on his own. It was boring, he said.
The mechanism shade uses eye-gaze record to concede him to roller a internet. The device uses infrared light to review his eye movements. He uses a same device on his computer. He can form by relocating his eyes opposite a monitor. He wrote an whole book, a self-published “Holy War for True Democracy,” regulating usually his eyes. Read some-more about Ferraiolo’s book here.
“I can form with my eyes as quick as people do with their fingers,” he said.
At mealtime recently, Kang sat down subsequent to him in a kitchen. Forkful by forkful, she fed him: scallops, grilled tomatoes and fennel, honeyed potatoes.
Ferraiolo ate hungrily; mostly he doesn’t have a appetite to eat as many as he needs. He stops eating when he is sleepy and not when he’s full.
“It’s unequivocally severe when a food is unequivocally good. You wish to keep eating,” he said.
Kang ate her cooking in between feeding Jon his mouthfuls.
“A lot of times I’ll lay here and eat with Jon. I’ll take a punch and he’ll take a punch and I’ll take a bite.”
Care for a caregiver
Kang pronounced she feels advantageous that they can means help. Caregivers come in a morning to wash, trim and dress Ferraiolo; a masseur gives him healing massages that assistance keep his muscles from frozen up. She squeezes in personal time or work when they are there; in a afternoons, she takes over caregiving.
“One of a hardest things is a everydayness of it. I’m a unequivocally artistic chairman and we like to have a lot of change in my life and do opposite things. And yeah, it can wear we down a bit,” she said.
Ferraiolo gives Kang space and time to herself. He’s told her to take a vacation, to go off with her sister or to sinecure some-more caregivers. She takes line-dancing, goes to an practice category and walks with friends.
She also receives mental health support.
“I had never seen a therapist before, though a crony whose father had upheld divided from ALS pronounced that she would like for me to see a therapist — not given we competence consider we need it right now — though to find a therapist before we feel like we are unfortunate and we need to speak to someone. There’s a bent to put a happy face on, and we don’t mostly uncover all that’s going on in your life. And sometimes, if we usually keep pulling all of this things down and we never let it surface, it can have bad consequences,” she said.
It’s critical for not usually Kang to have a life over ALS though also for Ferraiolo, she said.
“I know that people so mostly will usually kind of put him in a box given he’s a chairman with ALS. But he has many interests over ALS, and he’s a unequivocally egghead chairman and likes to engage, so with Jon I’d like people to see that he’s … a chairman with a celebrity and a story and a future.
“I would wish that people would see me in a same way,” Kang continued, “because infrequently people come adult to me — and everyone’s well-meaning — though there’s a unfortunate face that approaches we and, like, that your life is unequivocally terrible and (they’re) commiserating and feeling bad or contemptible for you. And for a many partial we don’t feel contemptible for myself.
“There are days, yes, that aren’t going so well. Every once in a while, each 3 months, we can go in a closet and I’ll have a good cry and usually kind of delight in self-pity for an hour. But over that we don’t unequivocally empathize myself and we don’t unequivocally demeanour for other people to empathize me or to empathize Jon or a life together given there is a lot of fun in life,” she said.
Ferraiolo reflected on vital with ALS.
“We both have blessings and burdens. Even people who are healthy have burdens like family issues, romantic issues, and practice issues, financial issues. I’ve got problems; you’ve got problems. Everyone has problems. I’ve got another problem with ALS, though I’m not opposite than anyone else. Everyone has issues. But given we have ALS, we don’t have to work anymore, so we have reduction highlight and we can concentration on experiencing adore with family and friends. And we also consider life is utterly amazing, if we take a time to compensate attention. So we have no regrets. we consider we have a weight of ALS and a blessings along with it.”
Pursuing a colourful life
Ferraiolo was articulate roughly nonstop on a gentle day this past April. Someone told him he was articulate too many and that he’d use adult all of his energy. But it was an sparkling day: Daughter Natalie was removing married.
In his bedroom, a caregivers helped to dress him for a marriage to be hold in their backyard. They put his arms by a sleeves of a creatively pulpy white shirt and buttoned his cuffs. Underneath, he wore his “The Greatest Dad in a World” T-shirt, that Natalie done for him when she was young. The imitation is now faded from many washings.
In a garden with Pepe wearing a tuxedo and dozing on his lap, Ferraiolo escorted Natalie down a aisle as Kang pushed a wheelchair.
The marriage was a latest in a array of milestones.
“Since he was diagnosed, a oldest got married. She usually had a initial grandchild in December. Also in Dec one of a twins, Allison, got married. In April, a second twin, Natalie, got married,” Kang pronounced this summer.
After grandchild Theo was born, Ferraiolo and Kang done a strenuous outing to Washington, D.C., to visit. It was their final trip, and it was tough. He grown a lung infection and spent miserable hours on a craft sitting in an ungainly position. No one was clever adequate to straighten him up. They had to projection a wheelchair and his respirating equipment.
But now Nicole and Theo come to revisit frequently. They put a tot in Ferraiolo’s path and overlay a new grandfather’s hands over a boy’s small body.
Some people censor divided when they get a diagnosis of a degenerative disease. But Ferraiolo and Kang wish people to know there are many some-more good times than bad, they said.
It takes reaching out to people infrequently — to make one’s needs famous and to assistance others feel comfortable.
The some-more people can speak about an illness, a reduction there is stigma. When people are confronted with something totally foreign, there’s a bent to stare, Kang said.
“You review about how ALS patients are trapped and detained in their bodies. People consider that contingency be terrible. … It’s unequivocally tough for people to know how it is probable for someone to be inept and to be happy,” Kang said.
“I’ve talked to people with breast cancer and Parkinson’s illness who are usually shut-ins, and no one comes over. It doesn’t have to be that way. It might be years of vital with a condition. Are they usually going to be hermits? You have to open adult a blinds and let a fever in. It’s not healthy for a person, a family and society,” she said.
Every month Ferraiolo and Kang have mixed visitors. Sometimes guest stay overnight and infrequently they come for afternoon tea.
“I would usually inspire people, if they do have a desired one with an illness and that desired one feels gentle about it, let everybody in a family know that it’s excellent to visit,” Kang said. “I usually consider that there’s no contrition in carrying an illness. It’s not something that we did to make this happen. It’s not a bad thoughtfulness on your life. It usually is. And all of us have something going on in a lives.
“Every time we demeanour around, we know, there are friends with issues — health issues with relatives or children or other desired ones or partners — and we usually consider that it takes a village. Not usually to lift a child though also usually to be and to live,” she said.
• Read more: New investigate offers wish for ALS patients
All of a small things that people worry about, that they’re endangered about, all of those things don’t unequivocally meant anything given life’s all about enjoying and vital to a fullest in a impulse that one is in, she said.
“It’s not wishing for something in a future, not usually meditative about a past and how maybe a past was so great, though truly vital in a moment. we wish people to know that we can live in a impulse with someone that we adore who has ALS and find good fun in that, that usually given someone has a incapacity or is not a same chairman in terms of their capabilities, they unequivocally are a same chairman inside. And hopefully that’s a same chairman that we fell in adore with. And that chairman is still there.
“Even if their voice changes and they can’t transport anymore or they can’t cuddle we anymore, they’re still that person, and they still adore we a same. And positively we still adore Jon a same, or maybe even more, given we have time to consider about what we have, and hopefully we’ll have a lot some-more time in a future.
“But we never know that. You never know that, if we have ALS. You never know that if you’re a ideally healthy chairman who walks outside, crosses a transport and has an collision and is no longer around. So we consider all of us should essay to live each day like it’s your final day,” she said.
Ferraiolo and Kang removed a outing they took to Hawaii in 2017. The illness had progressed significantly. It was Apr Fool’s Day, and he was in a rented floating wheelchair, relaxing as foot-high waves lapped during his legs. A 3-foot sneaker call unexpected sloping a chair over, knocking Kang, who was on one side ancillary a chair, off her feet. She was pinned underneath a chair, and a weight pennyless her leg.
Ferraiolo was face down in a water, his face buried in sand. He couldn’t breathe and he couldn’t move.
He wondered, after all he had been by with ALS, if this would be a finish — if he would die on a vacation island, smothered by silt and water. One approach or a other, he supposed his predestine in that moment, he recalled.
He’d had a good life with no regrets.
But it was not a finish for Ferraiolo. Two rugged Hawaiian group came to a rescue.
When they carried Ferraiolo adult and everybody began frantically brushing a silt out of his nose and eyes, they found him laughing.
• Jon Ferraiolo and Karen Kang are fundraising for a ALS Therapy Development Institute, that is dedicated to anticipating new drugs and therapies for ALS patients. More about a hospital and a fundraising bid can be found during fundraise.als.net/curejon.
Weekly Staff Photographer/Videographer Veronica Weber contributed to this story.