The Survivors: What Keeps Them Going

by Cheryl Carter New

Cheryl Carter New, an author in Inman, S.C., has had ALS for eight years, and sees herself as someone with a disability, not a fatal disease. She interviewed several people who’ve lived with ALS for seven to 15 years and found them a strong-willed group with some common characteristics.

Cheryl Carter New

Those of us for whom ALS didn’t prove fatal in three to five years have the opportunity to look at the disease, and at our lives, in a new way. As we realize we’re becoming long-term ALS survivors, we develop characteristics that give our lives meaning and hope.

When we’re told we have this disease, that we’ll be facing severe disability and that we may only live a few more years, we can choose to give up or we can develop survival characteristics. The people I interviewed began looking for the psychological keys to survival immediately after diagnosis, and they learned as much as possible before serious debilitations began.

Based on my interviews, I’ve found long-term survivors of ALS share a few common characteristics — some that were always part of their characters, and some they’ve developed along the way.

Survivors draw emotional stability and mental strength from outside themselves.

One man said the most important step in his survival was, "finding spiritual strength to accept the disease and learn what I can from the experience."

For some, strength comes from taking in nature’s awesome display of beauty. For others, the source is love given and received. For still others, it comes from spiritual or religious beliefs. In short, survivors believe in and are empowered by a power greater than themselves.

I sincerely asked God to take my life one night and not let me wake up the next morning, if was going to die of this damned disease. God woke me up and I knew living is what I was supposed to do. After that I did not stop living and start dying. I kept living my life, and kept planning my life years and years down the road as I normally did.

Survivors are universally stubborn skeptics when it comes to the "facts" about ALS.

They seldom take what they’re told, especially about this disease, at face value. They make up their own minds based on their own reasoning.

As a result, survivors are diligent researchers, looking up, digging out, and tracking down facts and figures — information and data — to answer the questions created by their skepticism.

Survivors will try almost anything.

Survivors use technology, medical procedures and treatments, dietary supplements, medications, devices, therapists, hospitals, medical centers and clinics, Chinese herbs, the Internet, e-mail and good music — whatever it takes to improve their sense of being in control. Nothing is out of bounds, and everything will at least be considered, though of course, skeptically.

Rather than being a matter of heroic effort, strong will or any other inspirational attitude, overcoming obstacles has simply been a practical matter because of my slow progression.

Survivors are problem solvers.

They take each difficulty as it comes and devise a strategy to deal with it. They adapt. They improvise. They overcome.

Survivors communicate.

When voice fails they use a speech synthesizer. When typing skills fail they use on-screen keyboard software and switches. When extremity movement fails they use eye movement — or a toe or an eyebrow — whatever they have.

We cannot yet cure ALS or prevent it or stop it, but modern management techniques and modern assistive technology now give us the possibility of surviving it with an active and satisfying life.

Survivors find a way to communicate, not just "yes" and "no" but opinions, observations, reactions and sentiments.

Survivors stay mentally active.

They read books, magazines, newspapers and supermarket tabloids. They watch videos, DVDs, television news and reality TV. They listen to music CDs, audiobooks, radio and eight-track tapes.

Survivors have somebody they love and who loves them.

My wife. I can’t even imagine what my life would be like right now without her. She lights up my life in ways she can’t even see.

The somebody is usually a parent or spouse, but may occasionally be a friend. Survivors know they have great value to another person. They feel it’s their responsibility to do what it takes to continue to live because someone needs them.

Survivors are relentlessly positive.

They live in the now, realizing that they aren’t promised tomorrow. They’re thankful for the way they are today, because they know that many people have it much worse.

I want to live and I fight to live to be here to watch our son grow up. He is the miracle in our lives.

This doesn’t mean survivors have their heads in the sand or are in denial. They’ve made a deliberate and conscious decision to live on the sunny side and refuse to see themselves as objects of pity. They see themselves as useful members of their families and their communities.

I believe that a treatment will be found within three to five years, and that a cure will follow within five to 10 years. Our job is to stay afloat, in as good shape as possible, until help arrives.

Survivors allow people to help them.

Skeptics and problem solvers tend to be fiercely independent, but long-term ALS survivors accept help from a wide variety of people.

Survivors are able to accept this help with grace and without bitterness, though this may be the most difficult of all the survival characteristics to master. When survivors learn to understand and accept their own value, they know that a simple thank-you is sufficiently valuable payment for a doer of good deeds.

Survivors help others.

This is the flip side of allowing people to help them. It’s universally the wish of survivors to help other people.

They’ve learned the importance and rewards of saying a kind word and spreading the compliments around. They usually want to help others with ALS and their caregivers by sharing the lessons they’ve learned.

Survivors have a wicked sense of humor and never lose it.

Asked, "What do you wish you had?" one survivor said, "I wish I had a nickel for every time an ALS ‘expert’ has told me I’m going to die."

Another man said that one of his most helpful devices is a bidet seat on the toilet. He went on to explain how the device cleans and dries at the touch of a switch, then dryly remarked, "My wife and I both appreciate ours."

So, a quick profile of an ALS survivor would show a wise-cracking, loving and loved, God-fearing, problem-solving, know-it-all who’s sickeningly positive about a condition that everybody else thinks is just awful.

The Joys of Surviving

Living with these characteristics keeps hope alive. It allows for the possibility of new discoveries and new delights, the knowledge that even ALS can open new doors in life.

You don’t know just how your disease will progress, how you and your family will adapt, what your tolerance for dependency will be, what your comfort level will be, what other medical problems might complicate things, what pastimes you’ll find to keep you entertained and even productive, what financial assistance, technology, help from friends, etc., will be available.

Another wise survivor said, "Don’t let anyone convince you that your hope is ‘false.’ Hope isn’t false, you either have it or you don’t."

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A NEW LIFE WITH ALS

Celebrating the Holidays

by Jennifer Bishop

With the holiday season upon us, we have many choices to make regarding our feelings about it.

The first Christmas after Steven’s ALS diagnosis we wanted to get away from everything that was familiar and take a wonderful trip to Hawaii.

It turned out to be the worst Christmas I ever had.

Even though we were vacationing in one of the most beautiful places I could imagine visiting, I couldn’t see past the diagnosis, and the only reason we were there was because of ALS.

Staying Home

Last year we decided we wouldn’t leave Colorado where we had always spent Christmas. Seeing the beautiful white-capped Rocky Mountains and waking up in our home is where I wanted to be. We knew there would be challenges and we accepted that things would likely be different.

As we were putting up the Christmas tree, Steven became exhausted and needed to take a rest, so he went to the bedroom and napped. This frustrated me, but instead of being able to articulate my feelings, I just closed up and shut down. I thought Steven should have rested on the couch so he’d still be part of the moment instead of going into another room.

Christopher and I finished putting up the tree alone. All I could think was, "This is the way it’s going to be and I’d better get used to it." As I thought more about it, I realized that Steven is still with us and we needed to talk about our feelings.

Later that evening, after Christopher was asleep, we discussed what had happened during the day and I was able to tell him my feelings. Steven shared how frustrated he was that he couldn’t help me and be part of the way we’ve always celebrated Christmas together.

Taking a New Approach

More changes are happening every day. I think about how we might have to change our holiday traditions again this year. Instead of fighting these changes or getting upset, I’ll try to be more communicative with Steven.

I’ve thought about spending two or three days decorating instead of forcing it into one day. And maybe we don’t have to do as much decorating as we’ve done in the past. In living with ALS, I keep finding out that life is about expectations, and if I plan to take more time on a project, I won’t get so frustrated.

Reasons to Celebrate

We have many things to be thankful for this year. Steven is still alive and able to get around. God has blessed us with a wonderful support system and a son who keeps us thinking about tomorrow.

My belief in God is what sustains me on this earth and why I remain so positive. Life still has meaning and purpose.

One last thought to leave you with: Steven and I think one reason that holidays are difficult is because they’re a poignant marker of progression. We’re trying not to make any holiday such a big deal anymore (kind of hard to do with a 5-year-old) and instead to celebrate every day. I try to cherish the memories of the past but also live in the present.

One thing ALS has taught me is not to plan too far into the future. I used to be such a planner that I missed out on too many todays.

I know others of you may have similar feelings about the holidays. My wish is that, when you read about my experience, you’ll know you aren’t alone. We’re never alone, thanks to MDA!

Steven and Jennifer Bishop are co-chairpersons of the ALS Division of MDA. Steven received an ALS diagnosis in March 2001. The Bishops live in Arvada, Colo., with their 5-year-old son, Christopher. Join the Bishops every other Wednesday for the PALS With Children chat at www.mda.org/chat/calendar.html.

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ALS Online

A special chat held on Nov. 13, Practical Ventilation-Respiration Tips led by respiratory specialist Sallie Bitner, a program information officer at MDA’s national headquarters, focused on the practical, everyday aspects of living with and caring for someone who uses ventilation/respiratory equipment.

A second edition of the chat will be held at 5:30 p.m. on Jan. 8.

See transcripts of past chats at www.mda.org/chat/transcripts.html.

Remember to check out MDA’s regular peer-led chats involving topics of interest to families affected by ALS: PALS With Children, Living With ALS, Spouse-Caregiver Chat and Positive Thinking.

Watch www.mda.org/chat/calendar.html for a schedule and announcements of upcoming chats of interest to people with ALS.

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SSDI Champion and MDA Award Winner John Hunter Dies

John Hunter and family

MDA’s 2003 Personal Achievement Award winner for Ohio, John Hunter, 40, died at home on Oct. 21. He learned he had ALS in May 2002.

Hunter helped future generations of ALS patients gain faster access to disability benefits by successfully lobbying for a change in Social Security regulations.

The Litchfield, Ohio, man initially was turned down for Social Security Disability Income (SSDI) benefits, even though his ALS prevented him from continuing his job with a contracting company.

Although the denial was quickly reversed after Hunter’s story was picked up by a local television news reporter, Hunter felt strongly that more should be done to streamline the process for others in his situation. His lobbying work was "a chance for me to make a difference for others. Time is a huge factor for people with ALS."

In part as a result of his appeals — in which he and his wife, Jonna, traveled to Washington twice to meet with governmental officials — the Social Security Administration this summer instituted the John Hunter Rule, which grants automatic SSDI payments to applicants with an ALS diagnosis. He received the MDA achievement award in recognition of his work.

Hunter is survived by his wife; two children, Victoria, 8, and Jace, 5; his mother, brother and sister.

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ALS Research Roundup

Study Finds No Benefit From Creatine in ALS

Strial of the nutritional supplement creatine, which animal studies had suggested might protect muscle-controlling (motor) nerve function, has failed to show any benefit in treating ALS for six months at a dose of 5 grams a day.

In a multicenter trial funded by MDA, Avicena (manufacturer of the NEOtine brand of creatine) and other organizations, 104 people with ALS were assigned to take either creatine or a placebo (inert substance).

Creatine was shown to be safe in ALS, but the investigators found no significant differences between the two groups in arm strength (maximum voluntary contraction), function (using the ALS Functional Rating Scale), or numbers of preserved motor units. (Each nerve cell and the muscle fibers to which it sends signals is a motor unit.)

The results were announced Nov. 17 in Milan, Italy, at the 11th annual meeting of the International Alliance of ALS/MND [Motor Neurone Disease] Associations and 14th Annual Symposium on ALS/MND.

"We are all disappointed in the results of this study, as preclinical data had suggested that creatine might be beneficial to patients," said principal investigator Jeremy Shefner, director of the MDA/ALS Center at SUNY Upstate Medical University in Syracuse, N.Y.

"However, it remains possible that creatine at higher doses, for a longer time period, or in combination with other agents may yet have a role in treating ALS patients."

Stem Cells May Fuse With Some Brain Cells

Scientists have speculated that stem cells from bone marrow, which can transform themselves into various cell types, could replace damaged cells in other areas of the body, repairing the area through repopulation.

Research on mice by a longtime MDA grantee, Stanford University molecular biologist Helen Blau, has shown these cells fusing with the damaged cells, rather than transforming into new functioning cells. This occurs in specialized brain cells that control muscle movement and balance, called Purkinje neurons.

Blau’s findings are published in the November issue of Nature Cell Biology.

Instead of replacing damaged cells, the bone marrow cells appear to be "performing the role of rescue cells" by attaching themselves to and taking on aspects of the Purkinje cells, Blau says.

Sometimes, when cells fuse, there’s a possibility of tumor growth from the now abnormal cell. However, Blau said the potential for tumor formation doesn’t seem likely in the cells she studied, because they were stable after fusion.

Blau is studying what environmental triggers cause bone marrow cells to fuse with Purkinje neurons. Blau hopes to use the triggers to effectively recruit bone marrow to cells in need.

Once the fusion process is understood, Blau also hopes to apply the process to cell types other than neurons, such as muscle.

"We just need to prove [this method] is robust enough to [confer] benefit in muscles," Blau says.

Stem Cells Safely Injected in Italy

Stem cells from an ALS patient’s own bone marrow can be safely injected into the spinal cord, according to the results of a trial conducted in Italy in 2001 and published in the September 2003 issue of ALS and Other Motor Neuron Disorders.

Four women and three men with ALS between ages 23 and 74 underwent a surgical procedure in which stem cells isolated from their own bone marrow were injected directly into the spinal cord in the mid-back region.

There were no serious adverse events during this trial, which was designed only to test the safety and feasibility of this procedure. Four patients experienced pain for a few days after the surgery, and five had unpleasant sensations in their legs for several weeks.

The investigators note that the "minimal side effects and the absence of detrimental effects on neurological function support further research in stem cell transplantation in carefully monitored patients with ALS."

Researchers hope injected stem cells may replace lost nerve cells, or deliver nerve growth factors into the central nervous system.

Riluzole Revisited: When and How Much?

Robert Miller

An article in the Oct. 28 issue of Neurology asks whether raising the standard dose of riluzole in some people with ALS might increase the effectiveness of the drug without exposing patients to an undue increase in side effects.

Riluzole (brand name Rilutek) is the only drug specifically approved to treat ALS by the U.S. Food and Drug Administration. At a standard dose of 100 milligrams a day, it has modest life-prolonging effects. It also can lead to nausea, diarrhea, weakness and damage to the liver.

The study, at University Medical Center in Utrecht, the Netherlands, says that individuals metabolize riluzole so differently that serum levels of the drug can vary widely. Although all 169 ALS patients they studied were taking 100 milligrams a day of riluzole, some had consistently higher blood levels of the drug than did others.

Those with the higher levels had fewer muscle twitches (fasciculations) and less muscle stiffness, although they experienced more diarrhea.

The researchers suggest that the higher serum levels may have provided more benefit and that patients with low riluzole levels might be given more riluzole without fear of markedly increasing side effects.

However, doctors at University Hospitals in Leuven, Belgium, report in the same issue that a 69-year-old man with ALS developed what appears to be a serious allergic response to riluzole. The patient, who had increasing and disabling shortness of breath and a persistent, dry cough, was found to have developed "hypersensitivity pneumonitis," or inflammation of the lungs. He recovered from this condition after treatment with corticosteroids.

Neurologist Robert Miller, who directs the Forbes Norris MDA/ALS Center at California Pacific Medical Center in San Francisco, says the Dutch data aren’t conclusive and it may be premature to consider increasing riluzole dosages.

He notes, however, that other studies suggest that, when the drug is given earlier in the course of the disease, the benefit may be much greater." Early administration of riluzole, he says, may prolong survival for much more than two months.

He adds that the increased survival time may prolong the earlier stages of ALS and delay the onset of the later stages.

Marijuana Relieves ALS Symptoms, Survey Suggests

Marijuana apparently contains chemicals that ease some of the symptoms of ALS, according to Greg Carter, a physical medicine and rehabilitation specialist who co-directs the MDA/ALS Center at the University of Washington in Seattle.

Greg Carter

After posting an anonymous survey about ALS and marijuana use on the Internet, Carter analyzed the responses of 131 people, 13 of whom reported having used marijuana during the previous year.

The drug, survey responders said, was at least moderately effective at improving appetite, relieving pain, lifting depression, lessening spasticity and controlling drooling. Marijuana was reported as ineffective in improving speech, swallowing or sexual functioning.

Depression-relieving effects lasted longest, respondents said. This symptom was relieved for an average of two to three hours. Carter, who will publish the results of his survey in the American Journal of Hospice and Palliative Care, posted the survey through the online publication The ALS Digest.

Carter says he doesn’t favor smoking marijuana or any other substance. However, he believes the cannabinoid chemicals in marijuana could be effectively delivered by a vaporizing device that would eliminate concerns about smoke-related damage to the respiratory system.

Although several states have laws protecting users of marijuana for medical purposes, federal law bars its use under any circumstances. A recent Supreme Court decision upheld physicians’ rights to discuss the possible benefits of marijuana with patients but prevented them from helping patients obtain marijuana.

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Award-Winning MDA Grantee Probes Brain Connections

Michael Ehlers

New questions are being raised regarding memories, aging and ALS, thanks to an MDA-funded Duke University Medical Center neuroscientist.

In ALS, the motor neurons, which control muscle movement, are damaged. Until now, proteins have usually been examined separately, but knowing how networks of proteins in the brain and nervous system interact in diseases like ALS would open new research territory.

Neuroscientist Michael Ehlers’ research has identified how a critical protein center, the postsynaptic density (PSD), is actively restructured. The PSD, a solid structure involving many proteins, is present at synapses (connections) throughout the brain and spinal cord and assists in the receiving and relaying of signals among nerve cells.

"In essence, the PSD is a microscopic signal-processing machine," Ehlers said.

Ehlers’ work examines how synapses in the brain are changed by brain activity.

Most remarkably, he’s found that turnover of all the proteins in the PSD is surprisingly fast, taking place over just hours. This means that pieces of information stored in our brains, such as memories and motor skills, are somehow maintained even though all parts of the PSD are replaced many times a day.

Ehlers recently received the prestigious Eppendorf & Science Prize for Neurobiology, which recognizes the best of the world’s neurobiological research by young scientists. It came with $25,000 and publication of his winning essay in the Oct. 31 issue of Science.

"We believe there are probably master organizers in the PSD that recruit or organize large subsets of proteins," Ehlers said. "Now, we can search for those master molecules."

With that knowledge, scientists can compare patterns in diseases such as ALS, "or even across individuals with different experiences and environmental exposures," he said.

Ehlers’ MDA-funded research attempts to determine why motor neurons may be hypersensitive to the natural brain chemical glutamate and thus selectively degenerate in ALS.

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Sharon Nelson: Keeping the Faith

by Kathy Wechsler

"I believe that the Lord is walking with me in the day so I have nothing to fear," says Sharon Nelson of Jamestown, N.Y.

THE ADVENTURE BEGINS

Found to have ALS in 2000, Nelson refers to the motor neuron disease as "Al’s" to take away its power as a disease.

"My Al’s is an adventure to enjoy each moment and to be a testimony of God’s love," said Nelson, who uses an electric wheelchair for mobility and has weakness in her arms. "I’m hoping this will encourage my children, that no matter what happens to you, keep your hands in the Lord’s hand and keep on going."

A former quality control consultant for Anderson’s Screw Products, Nelson, 54, finds that ALS has allowed her to concentrate on the important things in life — especially her family. Nelson and her husband, Ron, who live on a dairy farm, have seven adult children, 13 grandchildren and one great-grandchild.

"I’m in an environment in my home with my family and friends and church family that is calm, quiet, peaceful," said Nelson. "So I’m well-protected, well-supported and well-loved. I have no complaints."

A LOOK BACK

With her family on her mind and close to her heart, Nelson put her love of crafts to work and began an ALS scrapbook in 2001 to document her adventure.

The scrapbook begins with pictures of sunrises, reflecting her feeling that every day is new and one never knows what the new day will bring. Her family page presents pictures of the children and grandchildren, as well as photos of family get-togethers and celebrations with friends.

"This is my goal: to show it’s important to keep living, loving, laughing, learning, no matter what has come of my life," she said.

Fondly recalling a more active time, Nelson has a few pages devoted to church activities, speaking engagements and other outings. Another page shows the steps in her transition from walking with a cane to using a wheelchair.

"When I go different places, I take pictures so I can remember that," Nelson said. "I ‘did and went and done’ as long as I could, as hard as I could, until I can’t no more."

Nelson’s scrapbook concludes with photos of her neurologist, information about ALS and a page honoring MDA for its assistance and support. This page shows her participating in an MDA Lock-Up and receiving the local MDA Personal Achievement Award earlier this year.

Nelson says her scrapbook will give her grandchildren something to remember her by, something they could hold in their hands and from which they’ll receive strength and encouragement. Most of all, she wanted them to see that she had a good life, filled with love and laughter.

"I want them to know that when I am no longer able to hold them with my arms, I will always hold them in my heart," she said.

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New Medicaid Program Gives Recipients Cash, Not Predetermined Services

by Christina Medvescek

At least 10 states soon will be offering greater choice and control to people who receive Medicaid personal care assistance, through a program called Cash and Counseling.

The program provides cash instead of traditional agency services to eligible individuals. The cash can be spent on hiring a personal care attendant or in other ways that enhance the independence of the user. Participants are given counseling to help plan their purchases.

'Astronomical Differences’

Cash and Counseling grew out of a test project in Arkansas, Florida and New Jersey. Approximately 6,700 elderly or disabled Medicaid enrollees received monthly cash allowances equivalent to the cost of their usual agency services. Within limits, participants could spend the money as they saw fit, including hiring family members and friends as caregivers, or buying assistive devices and making home modifications instead of getting services.

The program resulted in "astronomical differences" in consumer satisfaction, says Kevin J. Mahoney, project director and associate professor at the Boston College School of Social Work. Participants reported better quality of life, more support for family caregivers, fewer unmet needs, better caregiver performance and reliability, and no negative impact on patient health.

The program was evaluated by Mathematica Policy Research of Princeton, N.J., which has posted results at www.mathematica-mpr.com/3rdlevel/cashcounseling.htm.

Funding to expand Cash and Counseling to 10 more states comes from a grant from the Robert Wood Johnson Foundation, the U.S. Department of Health and Human Services (HHS), and the U.S. Administration on Aging.

Watch Out

Some disability advocates fear that one hand will give while the other takes away.

Bob Williams, co-director of Advancing Independence: Modernizing Medicare and Medicaid (AIMMM, www.aimmm.org), praised the "strength and beauty" of the Cash and Counseling approach, saying it uses "limited Medicaid dollars in ways that best ensure independence and basic well-being."

But he cautioned that the approach works best if two conditions are met: The individual already has a support network of family and friends to tap for personal care assistance; and the monthly allowances are adequate and can be adjusted if needs change.

"One of my greatest fears," he told the health subcommittee of the House Energy and Commerce Committee this summer, is that at least some states will take advantage of consumer choice as a way to cut Medicaid costs.

He urged the federal government to establish "basic safeguards" against this and encouraged people affected by disabilities to make their views on services known to their legislators.

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STUDIES SHOW . . .

Part 3 in a series

IT’S DIFFERENT — BUT IS IT ‘SIGNIFICANT’?

by David Schoenfeld with Margaret Wahl

Much of statistical analysis in medicine seems to boil down to analyzing the role of chance.

An observed difference between two groups being compared in a clinical trial or laboratory experiment can be either meaningful or meaningless, depending on the likelihood that the observed difference is due merely to chance. A significant result is one that’s probably not due to chance.

It’s the job of the statistician to figure out just how big a role chance plays.

The probability that a specific difference would be observed by chance alone is called the p value, and this value can be calculated by applying a mathematical formula.

If the probability (p value) of finding this difference by chance alone is small, we say the observed difference is "significant." If it’s large, we say the result is "not significant."

Let’s take an entirely fanciful example. Let’s say, for instance, that investigators want to test whether or not passive exercise prolongs life in patients with ALS. They find, after studying the participants for six months, that the number of people surviving in the exercise group is four people more than the number in the no-exercise group. They calculate the p value for this trial to be .46.

Can this finding be considered significant?

Certainly not. The probability that any difference in survival between the two groups was due solely to chance here was 46 percent. That’s much too high, and no conclusions about passive exercise can therefore be drawn from this study.

Generally, if the calculated p value is more than 5 percent, the finding isn’t considered significant. This means that, if the observed difference were due to chance alone, it would occur more than 5 percent of the time.

By contrast, if the p value works out to be 5 percent or less, the result is significant. This p value means that, if chance alone were operating, you would see the observed result 5 percent of the time or less.

If you read medical or scientific papers, you’ll often see results reported as "p ? .05" (p is less than or equal to .05) or "p ? .01" (p is less than or equal to .01)."

The paper’s authors are letting readers know that these results wouldn’t be seen by chance more than 5 percent or 1 percent of the time, respectively.

So, why do we care about significance?

If chance alone can explain the findings, then the drug or treatment being tested probably isn’t worth the patient’s investment of time, money or any risk associated with the experimental therapy.

Of course, there are situations in which a trial looks promising and just fails to meet the significance test. In those cases, it may be wise to do a larger or longer trial to see whether a significant result might be obtained.

Investigators often have to repeat clinical trials or pool the results of several trials before making recommendations to patients.

To read Part I of this series click here or to read Part II, click here.

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