[BobbyB]

Beth Ann Lipskin had a steady stream of friends supporting her in her final days. Bennae Pastor-Clark, left, and Marilyn Conn visited her at Pikes Peak Hospice on her 55th birthday, three days before she died.


Finding light in the shadow of death

Headstrong woman endured pain, loss of independence as she fought to raise awareness about Lou Gehrig’s disease
By CAROL McGRAW
THE GAZETTE
February 3, 2008 - 7:35AM


The bench in the hallway of Temple Beit Torah is empty. Beth Ann Lipskin used to sit there, visiting with friends after services when she could no longer make it down the stairs to the social hall.

The last time she was here — in July — she had been honored by the temple’s congregation for her many local charitable works, including leadership of the temple board. Months later, the congregation and others gathered for her memorial service.

“Beth Ann exemplified Tzedakah,” said Bennae Pastor-Clark, a longtime friend, to those gathered. Tzedakah is the highest ideal of Judaism — living a life that matters.

Her dying days were also an exercise in Tzedakah.

Lipskin died Nov. 20 — three days after her 55th birthday — at Pikes Peak Hospice. Some might say she lost the battle against amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease. But Lipskin — who in her final weeks was unable to speak, chew, swallow or move anything but her left arm and a couple of fingers — made it clear that she had won. She died her way — stubbornly refusing feeding tubes, ventilators and most other medical niceties that would have prolonged her life.

She made her dying days an open book — telling her story to The Gazette to underline the travails that the 55,000 ALS patients nationwide and their caregivers endure.

The final chapter of Lipskin’s life was not focused on her agonizing death but the love and acts of caring shown by friends, the women of Temple Beit Torah, and strangers.

It was, as Noah benShea, philosopher and national laureate of The ALS Association, says, “a triumph of spirit over the shadows.”

While Lipskin was in law school, her mother died at age 50 after a 13-month battle with ALS. In 10 percent of cases, ALS is passed from parent to offspring. In fall 2006 Lipskin began to stumble and struggle with small tasks such as opening a water bottle. On Nov. 17, 2006 — her birthday — she got the bad news from her doctor. “There is no good day to know this,” he told her.

Last summer the disease progressed, and Lipskin became a prisoner in her apartment. She couldn’t drive her car, her energetic gait slowed to a shuffle. She had trouble combing her hair, brushing her teeth, dressing, lifting herself out of bed, swallowing, chewing.

Marilyn Conn, a friend and temple administrator, says, “It’s a horrible, mean disease. No treatment, no cure, no hope.”

ALS attacks nerve endings and pathways in the brain and spinal cord, slowly causing death of cells, leading to paralysis. There is no known cause or cure. More than 55,000 people in the United States at any time have ALS. But the numbers don’t reflect how widespread it really is because most die fairly quickly.

There’s only one medication widely used to fight ALS, Rilutek, which is thought to prolong life up to six months. Pharmaceutical companies focus on diseases that are more widespread, says benShea, whose father died of ALS.

“It would be foolish to think that economics is not involved in research. But I can assure you that as soon as one drug manufacturer’s sister or mother gets it, they won’t need 5 million patients to make it a focus. It only has to play out in your life once. It overwhelms you.”

ALS is in some ways the opposite of Alzheimer’s disease, which attacks a person’s memory. “One of the worst aspects of ALS is that you are trapped in your body. Your mind is there, but you are not able to move, to communicate,” says Leslie Ryan, patient services director for the Rocky Mountain Chapter of The ALS Association.

The disease was frustrating for Lipskin, who had been so fiercely independent and outspoken. Her professional life had included worldwide travel as director of the American Academy of Forensic Sciences, a professional society dedicated to science and law, and the Space Foundation, an advocacy group that trains teachers.

As her symptoms worsened, friends helped her get to her charity board meetings. She had been active in Partners in Housing, Pikes Peak Hospice, Junior League of Colorado and many other endeavors.

She especially was drawn to raising funds for the hospice — after seeing her mother die at home of ALS and her father’s exhaustion from caring for her. “At the time, I thought there had to be a better way to go through this for everyone,” she said.

In July, Lipskin agreed to move to a hospice in Pennsylvania to be closer to family.

But within days of arriving, her sister had to have life-saving surgery, and there were complications. Lipskin found herself immobile and alone, at a facility where the caregivers “were friendly, but not prepared for an ALS patient,” she said.
She sent e-mails to friends: “I want to come home.”

Ken Field, a friend for 30 years, found an assisted-care center in Colorado Springs that would take an ALS patient.

It can cost more than $200,000 a year to care for a patient in the late stages of ALS, Ryan said.

Lipskin, who had worked mostly for nonprofit agencies, didn’t have that kind of money. But there was help. Most people with disabilities have to wait two years to receive Medicare. But Congress in 2001 eliminated that waiting period for ALS patients. They can get the insurance as soon as they get Social Security Disability Income.

“People were dying before they could get benefits. That’s the nature of the disease,” said Pat Wildman, director of public policy for The ALS Association.

Lipskin arrived back in Colorado Springs in late September with only a few items of clothing, a CD player, and photos of family and friends. She had given other items to charity.
She was happy to be back.

“It didn’t last long because of the realities of living in a nursing home and being completely dependent,” said Lipskin’s friend Pastor-Clark, a teacher. Lipskin tried to brighten her room with family photos and books that she could no longer hold to read.

Most people with ALS are cared for at home, Ryan said. Only about 10 percent live in nursing homes.

Living in a long-term care center can be difficult for anyone, but it’s especially hard for ALS patients, said Ryan. “There are staffing issues. The patients don’t want to be there, they lose dignity and can’t do anything for themselves. It’s hard on everyone,” Ryan said.

And those issues are exacerbated by ALS’s relentless progression. “There is a lot of emotion around the illness — anticipatory grief and helplessness because the person is not going to get better.”

Lipskin had always been opinionated and quick to point out flaws in any program she was involved in — traits that helped her get things done in her professional and charity leadership roles. So it was no surprise that as a patient she was sometimes a handful for attendants and friends.

She wanted to be up and about, but it was painful and tiring. Someone provided a scooter, but the controls were on the right, the same side as her useless hand. Her neck muscles were so weakened her head hung down. Sometimes she wanted to be back in her bed to rest but couldn’t get that message across. It was a major procedure — she had to be strapped into in a slinglike contraption and lifted like cargo.

She tried to keep up with world news and politics and was especially happy when she heard that the House of Representatives had passed the ALS Registry Act. If passed by the Senate, it will establish the national ALS patient registry to be administered by the Centers for Disease Control and Prevention, to collect information that may help researchers find a cause and cure.

She knew that few people understand the ravages of ALS. “Please tell this story,” she said several times.

Friends brushed her curly hair, massaged her back, read to her, painted her nails gold, laughed and cried with her.

They also fed her because she hated going alone to the “feeding room,” where attendants spoonfed those who could not eat on their own.
She stopped eating for days at a time.
“I think she was trying to starve herself,” Field said.

Lipskin gave back to her caregivers the only way she could. She held their hands, joked, gave thumbs up signs, nodded, or turned up the edges of her lips to indicate her thanks.

When someone asked how she felt, she would peck away at the keyboard of a communication device, smiling like a naughty child.
“Sheeeet,” the mechanical voice machine would say loudly. “Sheeeet.”

The women of Temple Beit Torah devised a schedule so Lipskin would have visitors and help most days.

They created large cardboard signs with instructions to be followed by the everchanging staff members.
One bedtime note read:

“Please pull me towards the wall. Please pull me up so my head is on my striped pillows. Please roll me onto my left side. Line the wall with pillows to support my spine. Place bed control near my left hand. Move the tray alongside with the call button, Kleenex, TV remote all within reach. Please make sure I am comfy before you leave. Ask me. THANK YOU.”

The directions sound unnecessarily detailed, but pain is an excruciating side effect of an ALS patient’s lifeless muscles, Ryan said.

Lipskin sometimes feared the nights and pleaded with friends to stay with her. They slept in the empty bed in the room.

“We weren’t always the angels like it sounds. Beth Ann would get so demanding and I’d put my foot down,” Pastor-Clark said.

“One night her smoothie was too thick, then we put water in it and it was too thin. We wanted to be helpful and it seemed we couldn’t do anything.

“I finally realized that she was angry because she could not do it for herself. And then she also wasn’t remembering things that we had done, and she was going downhill so quickly it was very scary for her.”
Getting everything right 24/7 is hard on caregivers. Burnout is common.

Pastor-Clark took 10 days off from visiting to study for a test. “I felt guilty that it was a relief to be away.”

Field, 90, was Lipskin’s rock, seeing to her legal needs. The retired Army lieutenant colonel had been her boss at the Forensic Academy. He visited almost every day.

They met years ago in Washington, D.C., and Field remembered how shaken she was after visiting her mother, who was struggling with ALS.

“I really didn’t understand then,” he said, shaking his head. “I don’t think anyone who doesn’t have to deal with it does.”
Lipskin’s gutsiness gave Field and her other friends strength.

“Being with Beth Ann was healing for me,” said Nancy Marshall, who teaches at-risk high school students.

She worried it would be difficult to watch a friend slowly die. “But Beth Ann wouldn’t let me be caught up in my fears. I read stories and talked about my cats. She liked that.”

Lipskin had a love-hate relationship with death.

“I’m scared, but it is time to die. I want to die NOW,” she would type out to her visitors.
Field kept telling her that there was a heaven. “I’ll see you there,” he told her.

As a girl in Philadelphia, Lipskin loved the Ten Commandments and stories her grandfather would read aloud from the Talmud. He told her, “You have to be a good person not only for yourself but everyone.”

She said she had no concept of an afterlife. “I believe that you live the best life you can on Earth.”

One day, a chaplain visited while Pastor-Clark and Joyce Hartung, a Christian friend, were there.
“Do you believe in God?” he asked.
“A vengeful God. Nobody deserves ALS,” Lipskin replied on her voice machine.
“Will I see my mother?” she asked.
“I believe so,” the chaplain replied.

“I want to see her, but I don’t believe it,” Lipskin said. Tears rolled down her cheeks. Her friends cried with her.

She added, “I’m not angry at God. I’m worried about those I will leave behind. This can’t be good for my sister. She is ill, and my father in his 80s.”

Pastor-Clark tried to soothe her. “Your death will be a blessing. They have been through this once with your mother.”
The chaplain read a Christian story to her about life after death.
She replied, “Death is final. We live on in the hearts of those who love us.”
“I like that,” the pastor said.
As he got up to go, he said, “I’d like to come back and visit.”
“Yes, but no Jesus,” she replied, with her a flash of her former wryness.

The day came when Lipskin could no longer use the voice machine. She had always been meticulous with spelling, and completed sentences even when people early on guessed at what she was writing. It was as if she were showing everyone that she still owned her own words. But her fingers could no longer target the right keys.

Hartung said, “She was so angry she tried to hit all the keys at once. It was a terrible moment because she knew that was the end of being able to really communicate with the world.”

Some ALS patients are able to use other forms of communication such as lasers and pointers. But Lipskin was too weak.

For weeks Lipskin had wanted to move to Pikes Peak Hospice, the facility for which she had done endless fundraising and other volunteer work.
“I don’t want to die here,” she said of the nursing home.

Martha Barton, chief executive of Pikes Peak Hospice, said admittance is based on an evaluation by the hospice medical team and is tightly regulated by insurance and Medicare. In-patient hospice begins when a patient becomes so ill that other caregivers can’t offer 24-hour acute care.

Lipskin moved to the hospice Nov. 12.
“She was finally serene,” Field said.
The care was “quieter and softer,” Conn noted.

“They were so good to her,” said Charlene Beshany, a temple acquaintance. “As a nurse, I don’t hesitate to sit on the side of the bed; the more hands-on the better. But I saw the hospice nurse get down on her knees so that she was right on Beth Ann’s level. I knew it would be OK.”

On Nov. 17 — a year after her diagnosis — friends stopped by her room overlooking the mountains to celebrate Lipskin’s 55th birthday. They brought a birthday banner, sunflowers, lilies.
There was no birthday cake. She could not swallow.

Instead, she opened her mouth like a baby bird to accept tiny sips of water from a syringe.

Three days later, 16-year-old Brent Hawpe stopped by to play guitar for Lipskin. The St. Mary’s High School sophomore had played for her once before.
Her happy reactions the first time had inspired him to play for other shut-ins, he said.
But when he entered Lipskin’s room that evening, he said, “She didn’t look right.”

He summoned a nurse, who closed the door and put a flower on it — a sign that a patient had died.
Waiting in the hall, Hawpe asked, “Can I play a song to say goodbye?”
He went into Lipskin’s room and played “Ball and Chain,” which had been her favorite.

He sang: “Take away this ball and chain. I’m lonely and I’m tired and I can’t take anymore pain.”
“I had this feeling that she heard me,” Hawpe said.

Postscript: As per her final directives, Lipskin’s brain tissue was donated to the University of Pennsylvania for ALS research purposes.

The Pikes Peak Hospice Foundation will place her name on its Memory Wall, a wall Lipskin had helped create years ago to honor donors and volunteers.

Lipskin asked friends to bury her remains near her mother. Family members told Field that Lipskin wanted her ashes scattered in Colorado Springs in her favorite places.

Her friends will do both. “My mother is buried at the same cemetery as her mother,” Pastor-Clark said. “I’m going to put some ashes there.”

Field said they will plant a tree in Lipskin’s memory at America the Beautiful Park or Memorial Park in spring.

CONTACT THE WRITER: 636-0371 or carol.mcgraw@gazette.com

http://www.gazette.com/articles/lips...s_hospice.html

[BobbyB]

A dark diagnosis for a light heart
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By CAROL McGRAW
THE GAZETTE
August 12, 2007 - 1:05AM


It’s only seven steps down to the social hall where Temple Beit Torah members are gathered for dessert.

But Beth Ann Lipskin, 54, can’t navigate the stairs any longer and so she sits alone on a bench at the landing as laughter and conversation drift up the staircase.

“I’m like a queen on her throne,” she jokes, as friends stop by to give her hugs and a plate of strawberries. She gamely takes a bite, but chokes — as she does on most solid food.

On this evening she is being honored by the Jewish temple for her many good works, including past leadership of the temple board.

But she is also saying goodbye to almost everything that has given her life definition — friends and her charitable works. She has been diagnosed with amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, a fatal neuromuscular disease.

At the temple service, she cannot hold the prayer book. A friend, Marilyn Conn, shares hers, and then helps her walk up front to receive the congregation’s accolades.
The Shabbat prayer underlines the moment:

“Like the Sabbath candles, life is kindled, it burns, it glows, it is radiant with warmth and beauty. But soon it fades; its substance is consumed and it is no more.

“Yet we do not despair, for we are more than a memory slowly fading into the darkness. With our lives we give life. Something of us can never die; we move in the eternal cycle of darkness and death, of light and life.”

Lipskin is looking down because her neck muscles are strained. Her voice is slurred and her gait teeters — some strangers who don’t know she has ALS think she is drunk.

She has Conn read her farewell remarks to thank all who have given her rides, brought her food, rescued her during emergencies.
Her fate, she told them, has not dampened her love of Judaism.

She tells them she is going back home to Philadelphia to be near family. “I will reside in a hospice,” she says.
“This makes me so sad I can’t stand it,” Conn said later.

But Lipskin being Lipskin will not let the evening disintegrate into sadness or pity.
“Send me jokes,” she tells one friend.

And she entertains with stories of her slapsticklike tumbles and rescues. Tickled at the memory of her friends picking her up over and over she lets loose with a peal of laughter.

ANTICIPATING THE DIAGNOSIS

Lipskin received the diagnosis last November.
“You have ALS,” the doctor said.
“It’s my birthday,” she replied.
“There is no good day to know this,” he said.
Some patients would then ask: What comes next?

But Lipskin knows. While she was in law school, her mother died of ALS at age 50.

“ALS is relentlessly progressive and profoundly disabling,” explains Dr. Steven P. Ringel, director of the neuromuscular section at University of Colorado Hospital in Denver, which oversees the Muscular Dystrophy Association’s ALS clinic.

Life expectancy averages two to five years. Ten percent of patients live more than 10 years. A rare few live longer, such as famed Cambridge astrophysicist Stephen Hawking, who has had it for more than 44 years.
“For me, it seems to be going very fast,” Lipskin said.

The disease attacks nerve cells and pathways in the brain and spinal cord. When the cells die, voluntary muscle control and movement dies. It affects balance, mobility, speech, swallowing, chewing and eventually breathing, making a ventilator necessary to survive.

Most patients eventually become paralyzed, yet their minds remain sharp.

Lipskin first noticed something was wrong when she could not open jars with her right hand. Then she fell and injured an ankle. Eventually, as other causes were ruled out, she said, “I was anticipating the ALS diagnosis.”

The day before her doctor delivered the bad news, she and volunteer Adelaide Reid spent the day delivering Christmas trees to sponsors of the nonprofit Pikes Peak Hospice and Palliative Care.

Lipskin didn’t say a word about it until dinner, Reid said. “And when she told me, it was just very matter of fact. She has always been hopeful by nature. But given her experience with her mother, she knows the reality. And yet, she asks you about your family and your life, she doesn’t let these days be all about her.”

Ken Field, a longtime friend and former executive director at American Academy of Forensic Sciences where Lipskin worked for more than a decade, met her for dinner shortly after her diagnosis.

“She let out a scream, saying ‘I’ve got ALS!’ And then she said, ‘Where did that noise come from?’ But that was that.

“There has been relief when I realize how well she is dealing with it. Most would be terrified. She is highly intelligent and I think she has thought it through rationally. I can’t think of how she copes otherwise. But I fear if she loses a means of communication it will be horrible for her.”

To ALS patients, including Lipskin, the computer is a lifeline to the outside world. Even when they become paralyzed, many can use voice-recognition technology that allows their spoken words to be printed on the page. But Lipskin said, “I won’t be able to use that. My voice is going.”

She’s unable to use her right hand and types with only her left, but she’s slowly losing use of her left hand, too. She knows some people with ALS can control the computer only by blinking. She shakes her head as if she does not want to think about that.

PAINFUL FAMILY HISTORY

Lipskin says that the hardest part has not been the loss of mobility, slurred speech, the difficulty swallowing, or even knowing that these are the last of her days.
The hardest part was telling her 83-year-old father.
“I dreaded it because he went through it with my mother.”

But he was stoic and calm. Bernard Lipskin of Boca Raton, Fla., recalls how straightforward she was on the phone.

“It was very difficult hearing that,” he said. “I know what she will have to go through because I saw it with her mother.”

Lipskin had graduated from American University and was attending law school at Howard University when her mother became ill with ALS and died 15 months later.

“I remember her muscles would contract painfully all night. And my father would watch over her.”

Each time Lipskin came home from school to visit, she could see the deterioration. “It got so I could not understand what she was saying. We made her a board with the alphabet so she could point out what she wanted to tell us. It was difficult to see her waste away.”

Lipskin was drawn to volunteer at the hospice years later because she remembered how empty she felt after her mother’s death. “At the time I thought, ‘There has to be a better way to go through this for everyone.’”
The longtime hospice volunteer is now in need of a hospice herself.

Joan Selman, director of the nonprofit Pikes Peak Hospice Foundation, said, “It’s like by facing her reality as it is now, she is fulfilling what hospice is all about. She is taking control. It’s all about choices at the end of your life and letting people know what they are.”

“And despite everything she is going through, she is still asking me if there is anything she can do as a volunteer.”

As a girl in suburban Philadelphia, Lipskin loved the Ten Commandments, and the stories from the Talmud read to her by her maternal grandfather, Louis Kasoff. He told her: “You have to be a good person not only for yourself but for everyone.”

Those who know her say that is exactly how she has lived, giving much of her life to civic endeavors.

But being good doesn’t mean she is a milquetoast. “Beth Ann was sometimes a difficult child — she certainly had a mind of her own,” her father said.
Her independence never faded.

Lipskin has traveled to China, Europe, Russia and Japan. She was hoping to make it to Israel and Victoria Falls in Africa. But now she is lucky if she can get out of her apartment for a trip to the grocery store or to one of the many civic boards she serves on.

She worked more than a decade for the Forensic Academy, a professional society dedicated to the application of science and law that includes attorneys, doctors and criminologists.

She came to Colorado Springs in about 1980, when the offices moved here from Washington, D.C. Field, who was director, recalls the first time he took notice of her. He was walking by an office where statisticians were working on comparative factors about criminology labs.

“I heard her say, ‘This is not the way to do it.’ And she solved it. She has a terrific intellect, and could handle a ton of work. When we needed help she always raised her hand and said, ‘I can do that.’” She eventually became executive director.

Lipskin later worked for the Colorado Springs-based Space Foundation, an advocacy group that trains classroom teachers. Her last job was at an insurance service center, but she had to resign when ALS prevented her from talking clearly enough on the phone.

Lipskin carried on with her volunteer work, trying to make light of her obstacles.

Reid recalls picking her up for a volunteer luncheon and finding she couldn’t get into the tall sport utility vehicle. Undaunted, Lipskin suggested trying the cargo area. They reparked the SUV with its back to the curb, used some bags of cat litter as steps, and Lipskin rolled into the luggage area.

“We laughed all the way. Especially when we drove up to the door and people saw her get out of the back,” Reid said. “A lot of people would have been embarrassed, but Beth Ann was so tickled. She was telling everyone about it.”

PIECES OF HER PAST

Lipskin has been teaching the people around her the art of letting go gracefully.

These past weeks, friends have been helping Lipskin sort through her belongings. They ignore the finality by trying on old hats and laughing.

The small apartment is hot and cluttered with things that will go to charity, to family, to friends. A hospital bed is rumpled and filled with paperwork. They place pink sticky notes on things she will take to the hospice in Philadelphia. There aren’t many of them.

One item she will not part with is a tiny replica of a Jewish temple, given to her by her grandfather who escaped Russia during the violent pogroms against Jews. Such replicas were used to symbolize their sanctuaries during the Spanish Inquisition, when Jews had to worship secretly.

She is giving most of her things to charity. Some furniture — including an old lamp that was from her first bedroom when she was a child — will be given to her niece, a college student. “All I need will be a few clothes and high-speed Internet,” she said.

Lipskin shows good humor in the face of the disease. But in an unguarded moment she said, “I don’t like anything about any of this.

“There is a part of me that does not want to think of how bad it will get. I am trying to mentally prepare.”

She’s lost use of her right hand and arm, and noticed that her left hand is also becoming hard to close. “I asked myself, what if my other hand goes, then what?”

Two months ago, she was still going up and down the stairs to her second-floor apartment. As time passed, she had to go down backward to keep her dragging foot from tripping her. Then it became a major project, even with friends lending support.

Picking up the mail meant a treacherous walk down a dozen stairs. She praises the kind mailman who began bringing letters to her door.

“It all takes so much effort,” she said. “I was always spontaneous. Now I have to be organized, plan every little thing, even dressing.”

It is near impossible to get the toothpaste cap off, so she leaves it off. And “have you tried putting a bra on with one hand?” she asked, laughing.

A friend attached her hair dryer to a pole, so she can curl her hair with one hand. Her shower was in a bathtub, and she can no longer get into it.

In the early stages, she was able to drive her stick shift car by using her knees to hold the wheel while she shifted with her left hand. She dreamed of owning a car that had a pushbutton start, because even getting the keys in the ignition was a difficult task.

Instead, she sold the car and relied on friends to take her grocery shopping, to the Laundromat and to her civic board meetings.
Lipskin loves to cook but can’t lift the pans anymore.

Eventually, she could not lift herself out of bed. So she slept in an office chair at her computer, with her head on the desk. When friends learned about it they got her a self-raising hospital bed.

She has fallen many times. A cane is useless because her hands can’t grip it. She couldn’t get a health care helper because her Medicare has not yet kicked in.

She carries a cell phone, and friends came to her aid night and day when she couldn’t get off the floor.

She has always been an avid reader of political biographies, nonfiction and mysteries. But even turning the pages of a book or newspaper is difficult. For now, the computer and TV are easier to manage.
She is overdosing on C-SPAN and shows such as “Law and Order.”
“I’m afraid I will be bored to death,” she said dryly.

FIGHTING THE DISEASE

It’s a Tuesday evening and Lipskin is attending her first ALS support meeting in Colorado Springs, sponsored by Muscular Dystrophy Association of Southern Colorado.

In the parking lot her slacks are threatening to fall down because she was unable to button the top.

“That would be a grand entrance,” she said as an acquaintance helped her.

Nearly a dozen people are there to hear a guest speaker from a computer company. He’s developed software that will do everything from turn on radios to turn off house lights. It costs thousands of dollars.

Afterward, the ALS patients talk about football, grandchildren, gardening — everything but ALS.

Lipskin becomes impatient because she has come to get practical advice.

Finally she asks about the difficulty in traveling by plane. A discussion about airport wheelchairs ensues.
But most in attendance said they don’t travel much anymore.

Deb Kinnan, a counselor who leads the group, says later that the monthly meetings don’t mirror traditional support groups. Health issues limit attendance, and as the disease progresses patients can no longer attend at all.
ALS patients must be advocates for themselves, she says.

“There are problems with everything — insurance, health care, home help. It’s exhausting, frustrating, and they struggle.”

She adds that the stress on families is great, especially if they are the main caregivers.

“But what has impressed me is the people who don’t focus on what is lost, but what they still have.”

Lipskin’s father is disheartened by the lack of funding for ALS research.

“It’s one of those diseases that pharmaceutical companies don’t find financially beneficial to invest in.”

Lipskin explained. “There is an economy of scale. It doesn’t get the funding that cancer and heart disease get because there aren’t enough patients — they don’t live long enough for companies to make it a big priority.
“And so people suffer.”

Twice each day, Lipskin reaches into a pill bottle — not easy using a hand that won’t close — and takes a small white pill called Rilutek. It costs her $299 a month and prolongs the life of many ALS patients by up to six months. But it doesn’t work for everyone.

An ALS diagnosis does automatically provide Medicare. For Lipskin, it will kick in soon. She has dug deep into her savings for living expenses and medical care in the meantime.

‘I WON’T GO QUIETLY’

Lipskin planned to move to an apartment in Philadelphia in early fall, but the disease has progressed too quickly.

Her sister has arranged for a hospice that takes patients before they are critically ill, and that has a lot of experience with ALS.
“I agree I can no longer live on my own,” Lipskin said.

She seems almost relieved. At the hospice she will get a wheelchair and adaptive devices to help her when she can no longer talk, walk or use a computer on her own.

The hospice is a historic Philadelphia mansion with cozy fireplaces and period furniture.

“I’m a modern-style girl, myself,” she said, rolling her eyes at lace and ruffles. “My first job is to redecorate.”

She laughed. “I plan to continue to be hell on wheels. I won’t go quietly.” She has no idea how much time she has left, but said, “I don’t think I’m scared.” Field knows it will be a big adjustment to have people caring for her. “It’s not her fate that bothers her, it’s the disability. She is so independent.” She says at the hospice she will complete the legal advance directives for her care and death. Lipskin has written her own obituary. “I don’t want to be kept alive if I’m unconscious,” she said. “I don’t want a ventilator. I don’t want a feeding tube.”

The day before she left Colorado Springs, Reid gave her a glass butterfly, a reminder of the hospice memorial celebrations they organized for survivors. They always released live butterflies as a symbol of new life and hope. Lipskin says she is donating her body to ALS research. She wants to be buried next to her mother in the family plot. She does not cling to thoughts of an afterlife. “I don’t have a concept of that,” she said. “I believe that you live the best life you can on Earth.”

POSTSCRIPT FROM PHILADELPHIA

When Lipskin arrived in Philadelphia, she found out her sister had to have surgery for a life-threatening illness. She said the prognosis is good for her sister. Lipskin had to immediately go to the hospice. There, most residents are in critical condition. “I’m not able to have many conversations,” she said. She said some of her friends have called but cannot understand her because of her slurred speech. (It was easier face to face, with lip reading.) Her computer has not yet arrived, so she can’t keep in touch that way.
CONTACT THE WRITER: 636-0371 or carol.mcgraw@gazette.com.

Q & A

QUESTION: What is ALS?
ANSWER: Amyotrophic lateral sclerosis is a neurodegenerative disease, often known as Lou Gehrig’s disease, after the baseball player who had it. It affects nerve cells in the brain and spinal cord. In the late stages, patients can become paralyzed, but their minds remain unaffected.

Q: How common is it?
A: More than 5,600 people are diagnosed with ALS each year. At any one time as many as 30,000 Americans are affected.

Q: Is it contagious?
A: No. But it can be genetic and runs in the family in about 10 percent of cases.

Q: What causes it?
A: Doctors aren’t certain. Gulf War veterans and veterans dating back as far as World War II appear to be at greater risk of ALS, perhaps because of chemical toxins.

Researchers are also looking at excess glutamate, buildup of neurofilaments, defects in mitochondria, immune system abnormalities, and environmental toxins.

Q: What are the symptoms?
A: Muscle weakness and stiffness are early symptoms. Eventually muscles, including those that control swallowing and breathing, become paralyzed. Involuntary muscles such as the gastrointestinal tract, bowel functions, and bladder are not directly affected. Sight, touch, hearing, taste and smell are generally not affected. It is usually not directly painful, though side effects can be.

Q: How is ALS diagnosed?
A: It is very hard to diagnose because it can resemble other things. A variety of tests are necessary, including an electromyogram, or EMG, that measures the signals between nerves and muscles; imaging of the spinal cord and brain; and blood tests to exclude other disorders.

Q: Who gets ALS?
A: It can strike anyone, mostly those between 40 and 70, with the median age 55. However, even children have contracted it.

Q: Is there a cure?
A: No, it is progressive and fatal. Life expectancy is two to five years after diagnosis.

But in recent years, with improved medical care, many are living longer. About 20 percent live five years or more, and 10 percent live more than 10 years. Some scientists believe stem cells can someday be used to regenerate the motor neurons.

Q: What can be done to help patients?
A: Only one medication, Rilutek, is aimed at symptomatic relief and prevention of complications. Other help includes nighttime breathing assistance, alternative feeding and orthotic devices.
Sources: Muscular Dystrophy
Association, ALS Association