bulletEDITOR'S NOTE:  REGARDING "The National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Illness (NCAHB)"  http://www.amendhomeboundpolicy.homestead.com/  
 
Please visit NCAHB for updates and statements by David Jayne.  
 
 
Recently, David Jayne wrote CHN to inform us that he is currently building another web page -  here is a snip from his page:
 
 
bullet RespiteMatch.com was born from the need to find a comprehensive source on the Internet for caregivers, nurses, LPN’s, CNA’s, mid-wives, physical therapist, occupational therapist,  elder care, etc. to work in the home setting. I am a 17 year survivor of ALS, Lou Gehrig’s disease. I have endured many home healthcare nightmares and unproductive caregiver searches. RespiteMatch.com has powerful search capabilities that enables the user to find specific health skills or needs. Please check back soon.  http://www.respitematch.com/
 
David Jayne also wrote told us 

I recently become involved with a defense company called Nova-sol. They are developing very exciting noninvasive brain computer interface technology. I had the opportunity to try the technology recently and I was very successful. The technology is at least a year away from market. They need individuals for development. Locked in or nearly locked in individuals are needed. If you know anyone meeting this criteria in Hawaii, California, Virginia or the Atlanta area please email me at mailto:davidjayne@bellsouth.net

 

"it is not ALS that stands in my way, it is a harsh Medicare policy" David Jayne in his petition to Pres. Bush and Congress. 

bulletTHE TIN MAN'S HEART
bulletDAVID JAYNE'S PETITION: PETITION TO AMEND THE MEDICARE HOMEBOUND RESTRICTION: A Petition to President Bush and Congress In Support of David Jayne and the National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Chronic Illness 

 

 

bulletThe Tin Man's Heart

Faced with ALS, David Jayne chooses to live. He chooses to let a machine breathe for him. He chooses to watch his children grow. He chooses to savor every moment of his life.

By Bill Torpy
Atlanta Journal-Constitution Staff Writer

The Alaskan morning air is crisp. Each breath invigorating. The stream swirling around his waders is numbing. Sunlight twinkling across the current makes sunglasses a must: A fly fisherman must cast to the precise spot.

The young stockbroker stands at ease but extraordinarily aware. Suddenly, the rod jerks. It feels like a sockeye salmon, maybe a 10-pounder. He locks in, ready for battle, and then . . .

And then he hears his ventilator humming. Every five seconds the device on a cart next to his bed pumps air into his lungs. Poof. Shhhhish. Poof. Shhhhish.

It's another morning and David Jayne is awake, no longer the sturdy fisherman in his dream. A fleeting melancholy dawns on him; it's the opposite feeling of waking from a nightmare.

Jayne's cheek is deeply creased by a wrinkle from his pillow. His face -- every inch of him, in fact -- has remained in the exact spot since he was tucked away eight hours earlier. He can't move, can't wiggle to a more comfortable spot in the bed. Sleep comes only in patches. Pains and itches are willed away. Often, he repeats, "I'm OK. I'm OK." The mind gets good at conning the body, he says.

Twelve years ago, Jayne would have dismissed this existence as a living hell. But cocksure notions like those died along with his neuromuscular system. Across from his bed is a photo of the young man in the stream, proudly hoisting a salmon. The room is neat, the walls decorated with family photos and floral wallpaper border. Two armchairs sit near the bed to accommodate visitors.

It's still dark outside but the day is here. There are things to do. Some days, like today, there's a speech or an appearance to make. Other days, he shares time with his children, Hannah, 12, and Hunter, 10. Or just rolls outside and soaks in the sun's energy. He remains an outdoorsman.

Getting up is a daunting two-hour process. Sometimes it makes him so tired he wants to nap. But he never does.

"Bed is dead," Jayne says, paraphrasing Morrie Schwartz, hero of the best-selling "Tuesdays With Morrie." The book outlines a sportswriter's visits with his old college professor, a man dying of Lou Gehrig's disease, or amyotrophic lateral sclerosis (ALS), the same disease that has laid waste to Jayne.

The start of each day is simple. His middle left finger, Velcro'd to a button that's connected to a computer, turns on the "Today" show. He watches "Today" because he finds it the least liberal of the genre. He doesn't watch a lot of TV, sticking mostly to sports and news.

Rose Delisser, Jayne's live-in caregiver, hears the TV and knows Jayne is awake. Soon, the aroma of frying sausage fills the air. Jayne savors the smell of the sausages but he won't taste them. They will be pureed with scrambled eggs, grits and water and fed directly into his stomach through a tube.

'Get on with it and die'

So starts the day for Jayne, 39, who for nearly 13 years has watched his physical being shrivel to three barely twitching fingers, blinking eyes and a grimace that suffices as "No!"

ALS is a degenerative condition that strangles the motor neurons that transmit orders from the brain to the muscles. Muscles wither once the brain stops telling them to move. Once 210 pounds, the 6-foot-3 Jayne is now 130 pounds with smooth, amorphous hands and reed-thin limbs.

Jayne, who lives in Rex, 15 miles south of downtown Atlanta, is an ALS long-timer, a survivor who has watched two or three generations of ALS patients get diagnosed and die. He has cheated death through artificial means, thumbing his nose at a sizable public and medical convention that says "get on with it and die, already." Sometimes he feels selfish for it. It takes lots of effort by a legion of people to keep Jayne alive. Somehow, he must repay their sacrifices.

Once, Jayne aspired to make a fortune in business. Now those ambitions are channeled into helping other ALS patients and educating the public as to what is "quality" in life. Two years ago, when Dr. Jack Kevorkian helped an ALS patient kill himself on national TV, it was people like Jayne whose anger crackled though the Internet and on the airwaves. To Jayne, Kevorkian's message was that some lives are not worth living.

That message often drowned out voices like his own. "Life doesn't make headlines," Jayne complains. He calls his affliction "the monster" or the "thief," one that steals the ability to walk, speak, swallow and, finally, to breathe.

"It tries to destroy families, marriages, friendships, dreams, one's sanity, finances and even the will to live," he told a misty-eyed prayer group last month at St. James Catholic Church in McDonough, where he attends Mass every week.

He knows all too well of what he speaks.

Jayne referred to Job and said he often asks God about his purpose in life. He has yet to receive a divine answer. What remains of David Jayne is a keen mind, a fierce stubbornness, a reservoir of memories, a swirl of competing emotions and a need to somehow impact his shrunken world.

He maintains a self-deprecating sense of humor to connect with others, to get them over that wall of uncomfortable pity. He must make them see past the machines and human wreckage to the man he really is.

His lips are permanently pinched together in a frozen mask, so Jayne calls himself "the Tin Man" -- after the rusted and immovable "Wizard of Oz" character stuck in the Emerald Forest. But Dorothy isn't coming with an oil can to set him free.

Technological advances have allowed people with ALS to live longer and better. Jayne speaks through a computer, slowly typing in words with his left index finger. He may send 20 e-mails a day. He loves seeing visitors, relishes the human contact, but the computer is his lifeline.

But medical advances to halt or even delay the progress of the condition have come painfully slow since the day 61 years ago when a dying Lou Gehrig told a crowd at Yankee Stadium that he considered himself the luckiest man on the face of the earth.

ALS has reduced Jayne to a spectator. Those years of watching have caused him to wonder why others don't savor the small moments of life as he would: like holding a child, crunching leaves underfoot or wolfing a pizza.

He still likes to "walk" his dog, to listen to books on tape and to feel the breeze in his hair. Jayne is almost entirely paralyzed but, unlike quadriplegics, he still has feeling in his body. His daughter likes to tickle him by rubbing the cat against his arm.

Just one decision remaining'

In a lilting Jamaican brogue, Rose Delisser asks Jayne if he's ready. He blinks. Yes, he is. She mechanically vibrates his chest, unhooks the air hose connected to his throat and runs nearly a foot of rubber catheter hose down his trachea to suction his bronchial passageways.

ALS patients are usually given three to five years to live. Then they slowly suffocate -- unless they choose to get a breathing apparatus surgically inserted into their trachea. [Note from CHN: for more information, see CHN Digest Online: Vol.1 No.5, February 2, 1996 "Death by choking is a myth."]

Jayne had the procedure done nearly three years ago after spending six months in bed, flattened by the lack of oxygen. Only 5 percent to 10 percent of the nation's 30,000 ALS patients ever choose to vent. Once hooked up, a person with ALS can live for years, even decades.

But ventilators carry a stigma; a common medical wisdom is that venting prolongs the patient's agony. Jayne said his neurologist dismissed venting early on, saying he would have little quality of life and become a burden to his family.

Jayne feared the finality of his decision, of trapping a lucid mind inside a useless body tethered to a machine. He wanted to keep his options open. "I still wanted some steps in front of me," he said.

Now, there's just one step left: asking to be disconnected from the ventilator.

Jayne's wife, Melissa, disagreed with his decision to vent. She had lived with him for 10 years, raising two small children, as he deteriorated. She had spoon-fed him as two toddlers banged on the bedroom door, crying to get in.

But Jayne said it wasn't time to go. He was still young and wanted to watch his children, then ages 9 and 7, grow. He wanted to be more than a memory to them. He wanted to tell Hunter how to deal with bullies. To watch Hannah play softball. To hear them laugh. To feel them rub their faces against his while they told him about their day.

"I felt selfish for my decision," he says. "But I don't regret it."

The burden for caring for a severely ill person often overwhelms all other aspects of life.

"It's very difficult to maintain a marital relationship through intense caregiving," said Meraida Polak, a nurse who runs the ALS clinic at the Emory Clinic and knows the Jaynes. "Often, if couples continue, they do so as caregiver and patient."

Last March, two years after he went on the ventilator, Melissa left with the children.

Kevorkian's number in his Bible

A sling placed under Jayne is hooked to the hydraulic lift above his bed and he is hoisted several inches above the mattress. Delisser and Jayne's father, Bill, who often arrives for the morning drill, pivot David midair and slide the swaying human package along a metal track bolted to the ceiling. He is lowered into a wheelchair, and his breathing apparatus follows on a rolling cart.

It takes two people to caravan into the bathroom, where a portable radio is tuned to Kicks 101.5. The singer laments: "I'm just a simple country boy with a simple troubled life."

His wife's departure deeply wounded Jayne, who lives for his children. He descended into an emotional abyss. His untiring will vanished. He spent nights sobbing. He rolled aimlessly through the neighborhood wracked with self-pity, unsure whether he wanted to hang on.

But Jayne gradually realized he had become a beacon in the ALS community, admired as a fighter who extolled that joy was still there for the taking. But here he was, thinking that he couldn't continue. He felt like a hypocrite.

It crystallized in his mind that there were still people he could reach. That spark inside him still remained.

Four years ago, Jayne was introduced to Hugo, an ALS patient in California who dwelt on his worthlessness and kept Kevorkian's phone number in his Bible. Julie Scurich, Hugo's physical therapist, knew of Jayne through some inspiring Internet postings and asked Jayne to get in touch with her friend.

"In a short period of time [Hugo] stopped crying," Scurich said recently. "Though things were not easy for him, he was from then on able to live one day at a time, appreciate the gifts he still had, and the strength of his spirit was renewed. It was an amazing transformation."

After Hugo's death, Scurich sold his motorized wheelchair and used the money to help pay for Jayne's care. She now runs the ALS Internet list server that Jayne founded.

Jayne started the list server in April 1999, as a place where PALS (people with ALS), caregivers and family members could trade tips, share jokes, find information or just blow off steam. Nearly 500 people are connected to Jayne's site and get a slew of messages e-mailed to them every day.

The Internet, he said, is the difference between living in darkness and light.

Jayne feels physically sick when a new lister introduces himself on the site as recently diagnosed. He knows what they face.

In late 1987, Jayne felt a twitching in his left arm. Tying fishing flies got cumbersome. One day, the groceries he was placing in the refrigerator crashed to the floor as if he had just let go.

Jayne was 27 and otherwise healthy, just four years out of the University of Georgia and nine years from being senior class president of Forest Park High. He had just bought a house in Decatur and was starting his upward trajectory. He just knew there would be a reasonable explanation for what was happening to him.

After a series of tests, Jayne sat in a small examination room at Emory. The doctor was matter-of-fact: You have ALS.

"It was how I would prefer to be told I was going to die if I just had some idea it was coming," he recalls.

"One of the female interns was visibly shaken by what just took place," he said. "I know this is totally insane, but my first thought after being told I was going to die was I felt sorry for her being upset and having to be in the room."

He left the building on that sunny spring day and noticed people walking, joking, singing along to their car radios. It struck him that his life was ending but the world continued, unnoticing.

A week later he learned he and his wife were going to have a baby.

Father to his children

Delisser pushes Jayne's chair into the shower and washes his hair with a handheld sprayer. She shaves him.

Jayne likes a close shave. His children like his face smooth. There's a discipline to shaving daily. He looks better, feels better. He'll take any advantage he can get.

The children visit two afternoons a week and every other weekend. To them, Dad's condition is normal. Hannah's earliest memory of her dad was of him pulling her in a wagon while he drove a motorized scooter.

She smiles, works and wheedles him to get what she needs. She performs an exaggerated version of his you're-in-trouble grimace and kisses his cheek. Hunter and a pack of boys thunder through the house to play a video game in another room. Jayne savors their jabbering. His mouth curls into a grin.

Jayne lives around the corner from his parents in a house he bought not long after being diagnosed. He lives off Social Security and disability payments from his old job. His mother, Georgia, and father pitch in most days to help care for him.

Medicare also sends someone four mornings a week to help with his shower and other chores. But to qualify for the aid, Jayne must be considered "homebound," leaving the house only for medical appointments or church.

That means he can't go out to give speeches, to attend charity "fun runs" or to travel with college buddies to the recent Georgia-Florida game in Jacksonville. He does anyway. "I'm not going to stop living just to get shower help four times a week," he said.

Bill combs Jayne's hair as his head bobs around. Delisser brushes his teeth. They work in tandem, like a pit crew. Bill pulls on his son's shirt. "I used to do this when he was 6 years old, with his little Catholic school uniform," said Bill, an even-keeled fellow with an easy laugh and an optimistic spirit.

But there's a toll.

"On my worst days I complain about what I retired to, until I catch myself," said Bill. Most days the two hold each other up.

Intensely independent, proud and hard-headed, Jayne often won't tell the truth when asked how he's feeling. Fine, he'll answer, even when he's not. He hates being a sponge off everyone, depending on others for virtually everything. He shudders at the prospect of losing the small twitch of movement in his fingers. He has lost movement in one finger in the past year.

After his wife left, Jayne went before the St. James congregation and asked for its help. It was humbling and he wept as his computer rambled through his pre-written speech.

About 60 people signed up to help him with house chores.

"He's brought a lot of joy into my life. I've gotten more from him than I've given him," said Roger Tyler, a neighbor who sometimes stays with Jayne to give his parents and caregiver a break. "He makes you back up and look at things. I'm thankful I can fluff my pillow at night."

Speaking via computer


Dressed and fed, David maneuvers his chair outside to his van. The lift pulls him inside and his father drives him to Gwinnett Tech to talk to a class of physical therapy students.

He rolls into the class and is met with rapt, albeit somewhat uncomfortable, attention. Students lean forward with smiles glued to their faces that do not disguise their pity. He describes his affliction and offers advice on how to deal with people like him. Don't shout, he says, he may be an invalid but he's not deaf.

"Most frustrating of all is when people talk to my caregiver as if I was invisible, instead of talking to me," he said. "Please know your patient's illness and treat them with the dignity that they deserve."

The computer's delivery of Jayne's words is stiff and off-kilter. But after a while, the mechanical voice is him.

He tells the class of his love for the outdoors but says he finally had to let fishing go. The class gets gloomy for a moment, until Jayne continues: He couldn't find waders to fit his wheelchair.

The class laughs, a little taken aback. Pity and uncertainty dissipate. The students crowd around Jayne, genuinely interested in learning how he manipulates his computer. He has connected with them.

Jayne smiles. It is a good day.

SOURCE Originally, this article appeared on  http://www.accessatlanta.com/partners/ajc/reports/tinman/index.html - That site no longer stores this article.

bulletDAVID JAYNE'S PETITION

To: President Bush and Congress 

A Petition to President Bush and Congress In Support of David Jayne and the National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Chronic Illness 

Dear President Bush and Respected Members of Congress, 

My name is David Jayne. I am 39 and have had a 13-year battle with Lou Gehrig's disease, otherwise known as Amyotrophic Lateral Sclerosis (ALS), a degenerative condition that causes my muscles to atrophy. I live in the community of Rex, 15 miles south of downtown Atlanta, Georgia. In early 1998, I had a tube inserted in my throat and was hooked to a portable ventilator. I use a computerized speech processor to speak. I receive my nutrition via a tube permanently inserted in my stomach. My mobility is limited to the ability to twitch three fingers.

These medical conditions create an ongoing need for skilled nursing. Admittedly, the disease I face is brutal and harsh. However, I do not face this disease alone. I love life, my church, my friends, my community and my family. With the adoption of the ADA, which your father so heroically signed into law, it has opened many doors once thought permanently closed to the disabled. Along with these new laws, new modern technologies, such as portable ventilators, have created even more unparalled opportunities for me to be an active and contributing part of my community. Today, however, it is not ALS that stands in my way, it is a harsh Medicare policy. 

My Medicare home health care provider had been sending an attendant to my home for two hours a day,
seven days a week since 1997 to help me get out of bed and take a shower. Last year my provider tried to
terminate my service after I went to the funeral of a friend who had died from ALS. I skirted that challenge but it points to the harsh impact of Medicare's homebound rule. Recently, however, because I gave inspirational speeches at my church and to a class of physical therapy students, participated in an ALS "fun run," and traveled with a college friend on an overnight trip to watch the University of Georgia -- University of Florida football game, my Medicare home health care benefits were cut off. The provider was following a Medicare policy that no longer considers me "homebound" and thus eligible for these vital medical benefits. My Medicare benefits have since been restored, but at the cost of my freedom. I must now remain confined to my home to maintain these benefits. 

I ask you now to help improve this harsh governmental policy which virtually has made me become a prisoner of my home. I have learned of other similarly situated people with significant chronic illness across America. I value these Americans. I care about the quality of their lives. Under Medicare rules, a person is considered homebound when "leaving home is a major effort" and "When you leave home, it must be infrequent, for a short time or to get medical care". 

I ask that we amend this policy. The amended policy should rest on medical standards taking into consideration the amount of effort it takes for a person to leave the home. The frequency and duration criteria as they presently exist are wholly arbitrary. If persons with significant chronic illness are able to acquire the technological and personal resources necessary to leave their home, they should be granted the freedom to do so and still receive the medical and personal care they need and deserve while living at home. If a fair policy cannot be achieved due to financial constraints, let us work positively and creatively for better solutions. 

Sincerely, 

David Jayne, Rex Georgia 

The National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Chronic Illness 

Please read the mission statement of my National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Chronic Illness. Please join our coalition by endorsing the petition to President Bush and Congress set forth below. 

Please Sign Our Petition: 

I hereby pledge my support to David Jayne and the National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Chronic Illness. I hereby call upon President Bush and Congress to improve the homebound policy by enacting new legislation which assures Medicare beneficiaries with significant chronic illness and ongoing skilled medical needs, who need maximum or total assistance with their activities of daily living, will not lose their Medicare home care benefits if their skilled medical need remains unchanged and if they so choose to go on a vacation, volunteer in their community, go to a funeral, go to school, or otherwise try to participate in American Society despite their condition. 

---------------------------------- ------------------------------------ 
http://www.PetitionOnline.com/abolish1/petition.html
Signed Dated 

Sincerely, 

The Undersigned 

FOR MORE INFORMATION ON THE  NCAHB: A coalition working to free America's Medicare
beneficiaries who have a significant chronic illness and who are completely dependent on others or require maximum assistance for activities of  daily living to be free from  Medicare's  Homebound
restriction PETITION GO TO http://www.amendhomeboundpolicy.homestead.com/index~ns4.html

 

To write David Jayne  mailto:DJayne23@aol.com

 

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