Don’t Let Leg Swelling Go Untreated

by Christina Medvescek

Diane Huberty

As a former nurse, Diane Huberty knows the dangers of leg swelling. Left untreated, it can become a vicious cycle of swelling, leading to vein and valve damage, leading to more swelling.

But as a person who’s lived with ALS for almost 20 years, Huberty also had to learn about leg swelling the hard way.

"My legs are ghastly," writes Huberty of Fort Wayne, Ind., in an article about leg swelling on her Web site, Nursing Tips for Living With ALS (home.att.net/~liveletdie5/ALS/home.html).

"They look fine when I am lying down, but the minute I sit up they turn hideous shades of red and purple and blue and gray," she writes. "If I am not careful to prevent as much swelling as I can, they are swollen like sausages by noon and miserably uncomfortable, and absolutely painful by evening."

Leg swelling, a possible side effect of ALS inactivity, can range from minor discomfort to outright pain and, as Huberty describes, it can get worse if you don’t deal with it.

What Causes Leg Swelling?

Unfortunately, there’s no "up elevator" in the circulatory system. Blood returning from the feet to the heart has to be pushed and squeezed along like a packet of catsup.

Walking helps this process because muscle contractions compress the veins and force blood up against gravity. A series of one-way valves along the way keeps blood from draining back down.

When walking ceases, it’s harder to get blood back up from the feet. Constant sitting also constricts blood flow by putting pressure on the veins.

As blood pools, the veins expand and water seeps out into the surrounding tissues, causing swelling, or edema. When this happens repeatedly, veins become leaky and water seeps out more easily, causing faster swelling. Meanwhile, the valves bearing the weight of the pooled blood can fail, allowing blood to drain back down. Such valve damage is permanent, leading to more circulatory problems.

It’s Dangerous

Besides the unsightly swelling, edema can cause a painful burning sensation. Feet and legs can become sensitive to hot and cold temperatures, and as circulation gets worse, the skin of the legs and feet can become fragile and damaged.

But the most dangerous side effect of leg swelling is the increased risk of developing a deep venous thrombosis or blood clot that can travel to the lungs (pulmonary embolism). (See "Warning Signs" below.)

Edema Treatment

"Prevention and treatment are the same," says Kathy Peters, MDA’s ALS Health Care Services Coordinator in Shawnee Mission, Kan. "Elevate, elevate, elevate."

Raising your feet so they’re on the same level as or higher than your heart lets gravity do the work of moving blood. A tilt-in-space wheelchair and hospital bed "are probably the most comfortable and efficient for this," Peters says.

Many people with ALS use an ordinary reclining armchair to put up their feet. Huberty warns that this can actually lead to more swelling. The recliner’s footrest section is designed so that most of your leg weight rests on your calves, which can constrict the very veins you’re trying to help.

Second, putting up your feet without "unfolding" at the hips can further impede circulation. "If you spend most of your time in a recliner, I strongly recommend that you bring the footrest up only when you lower the backrest," she advises.

A diuretic, commonly prescribed to reduce swelling due to fluid retention, is "absolutely not indicated" for people with ALS, says Joan Wilson Appel, physician assistant and clinical research coordinator at the Ronny and Linda Finger MDA/ALS Center at Baylor College of Medicine in Houston.

The problem isn’t one that diuretics will solve, and ALS patients already have trouble keeping well hydrated, she says.

Similarly, a low-salt diet won’t help swelling that’s due to inactivity,

although it’s beneficial for people with hypertension or congestive heart failure.

Preventing Swelling

Movement helps prevent swelling — even passive range-of-motion and stretching exercises performed by a caregiver several times a day.

"Make it part of each and every day, just like hygiene," Appel suggests. Similarly, a gentle foot massage improves circulation and reduces swelling, Peters says.

Frequent repositioning in a wheelchair or recliner is important to keeping blood in the veins flowing freely and helps prevent blood clots as well. When sitting upright, make sure your legs don’t dangle, Huberty adds. Rest your feet on a low box or footstool to take pressure off the backs of your thighs.

Compression stockings that bind the calves and feet tightly, and medical devices that inflate/deflate to squeeze legs and feet, are other ways to keep blood moving along.

Huberty has found that spending a longer stretch of time in bed helped her leg swelling immensely. When her husband’s schedule changed so that she could spend 10 unbroken hours in bed at night — as opposed to seven hours in bed and three hours in a recliner later in the day — her swelling began later in the day and was less intense.

"Now I don’t have to lie down in the afternoon in order to be comfortable in the evening," she says.

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ALS Research Roundup

Study of New Compound Open

The international pharmaceutical company Novartis has opened a large-scale, dose-finding trial of a compound called TCH346 for treatment of ALS.

This compound has been found to have anti-apoptotic (anti-cell death) properties in laboratory models of neurodegenerative disease. In ALS, muscle-controlling nerve cells (motor neurons) die for mysterious reasons, and several drug strategies have aimed at keeping these cells alive.

A short study conducted by Novartis in New York and Canada has established the drug’s safety and candidacy for large-scale testing.

The trial is open at about 20 sites in the United States and at other sites in Canada and Europe.

For more information, contact any of these people at Novartis: Ellen M. Vernotica, global clinical trial leader for ALS, (862) 778-3441 or ellen.vernotica@pharma.novartis.com; Meredith Weidenman, (862) 778-7562 or meredith.weidenman@pharma.novartis.com; Dayao Zhao, medical adviser, (862) 778-4756 or dayao.zhao@pharma.novartis.com.

For specific study sites and other details, see the MDA clinical trials section at www.mda.org/research/ctrials.aspx.

Writing About Events May Lower Caregiver Stress

Graduate student Suzanne Candell at the University of Minnesota in Minneapolis recently studied caregivers of people with ALS and other neurodegenerative diseases (see "Caregivers Invited to Try Journal Writing," July 2002) to see whether writing about distressing events was helpful.

Candell divided the caregivers, 47 of whom were caring for someone with ALS, into three groups. One group was asked to write three journal entries (essays), one day apart, about a distressing event of the caregiver’s choosing; a second group wrote three essays about a perceived benefit of a chosen distressing event; and a third (control) group wrote three daily entries about a neutral topic.

A month after the writing sessions, caregivers in the two experimental groups reported significantly lower levels of perceived stress than did those in the control group.

Perhaps surprisingly, those who wrote about distressing events, but weren’t asked to find benefit in them, had better perceptions of their own health than did people in the benefit-finding group.

Participants in both experimental groups reported that they found participation in the study more valuable than did those in the control group.

However, writing group assignment made no difference in caregivers’ measured level of hopefulness, Candell reports.

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Internet Sites: Keep Them Simple, Reliable, Caregivers Say

A survey probing caregivers’ use of the Internet found that 90 percent of those answering an online survey used the Internet for help in managing and monitoring their ill family member’s health. (Of course, those not using the Internet probably wouldn’t have come across the survey.)

The study, conducted by nurse Danita Ewing, then a doctoral student and now an assistant professor in the School of Nursing at Oregon Health & Science Center in Portland, was divided into two parts.

In the first, completed by 72 caregivers, Ewing asked about participants’ characteristics and interests.

Caregivers who completed the survey were 91 percent women and 89 percent white. They ranged in age from 24 to 79, with an average age of 50, and were caring for at least one family member.

The largest number, 54 percent, were caring for a parent or stepparent, while 31 percent were caring for a spouse or partner. Most had at least some college education.

Several themes emerged in the second part of the survey, which involved telephone interviews with 15 caregivers.

The interviewed caregivers said they wanted information about their family member’s disease and its treatment, particularly if it was practical.

Examples of desirable information included caregiving tips; skill teaching; how to interpret signs and symptoms; what to expect; and how to obtain legal, financial, insurance or placement services.

Caregivers said they decided whether Internet-based information was credible or not by noting whether it was from an authoritative source and whether the site reported content that could be checked elsewhere.

They were suspicious of commercial sites and unattributed information.

Caregivers found the Internet a source of emotional and social support, but to varying degrees.

Some reported that the amount of information on the Internet could become overwhelming, as could the emotional cost of feeling connected with others online.

Caregivers preferred sites with few special effects, clear labeling of content categories, and quick summaries with links to more information.

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Mississippi Mayor Joins Fight Against ALS

by Kathy Wechsler

Julia and Larry Otis

Julia Otis of Tupelo, Miss., said, "ALS is a terrible disease, but I’m going to keep my life as normal as possible."

Starting in the facial region last year, Julia’s disease has limited what she can eat. She’s also noticing her legs growing weaker as her mobility slowly decreases.

Despite the changes in her body, Julia remains positive with help from her family, friends and faith.

Help From Above

Julia, 64, and her husband, Larry, 65, who was elected mayor of Tupelo in 2000, feel blessed to have a loving and helpful family, which includes four grown children and five grandchildren. (Their town is best known as the birthplace of Elvis Presley.)

Friends constantly offer prayers and support as well, providing Julia with rides to physical therapy and sending cards, flowers and food. When Julia began using a walker, a group of adults from Larry’s Bible study class at Calvary Baptist Church took it upon themselves to build a ramp from the driveway to the home’s front door.

Julia taught Bible study class for 30 years, helping to shape the spiritual and moral fiber of preschool children.

Her husband said, "I’m probably the most fortunate man in the world to have such a wonderful, wonderful wife who’s given her life in raising our family and in helping other people so much. Now I have an opportunity to return to her all the kindnesses that she’s done for our family in taking care of her." 

Call in the Troops

Found to have ALS in July, Julia asked her husband to use his position as mayor to become an advocate for those with the disease. He frequently speaks at public forums and addresses the seriousness of the progressive neuromuscular disease.

Larry Otis was appointed to the National Advisory Committee of Rural Health and Human Services last year. The 21-member group holds meetings across the country to discuss rural health problems such as aging, oral health and behavioral health. The committee then recommends changes in regulations to Secretary of Health and Human Services Tommy G. Thompson.

Hoping to address the life-threatening diseases covered by MDA, Larry has proposed discussions on ALS and muscular dystrophy as well as accessibility issues for 2004.

"When you live in rural areas, it’s difficult to get diagnoses and then get the services that you need with those illnesses," Larry said. Both of the Otises are cancer survivors.

Now in his second term, the mayor is confident that his wife’s diagnosis won’t affect his ability to serve. The next election is in 2005, and Julia’s made him promise to run for office again, regardless of what happens to her.

"I have a promise to keep," said Larry, who admires Julia’s strength and determination in facing each challenge.

Love Comes in All Shapes

The city has dedicated a rose garden next to the city hall in Julia’s honor.

Her grandson, Will, convinced his fifth-grade classmates to raise money for MDA last year. The 10-year-old’s gifted class featured Julia at their booth during the Students Helping Others Project (SHOP) three-day event.

"My advice to anybody," Larry said, "is that you better tell that spouse of yours or that person that you love the most, you better tell them today how much you love them, because you don’t know what tomorrow will bring."

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ALS Online

Join MDA Director of Planned Giving Fred Stecker and MDA directors of special gifts at www.mda.org/chat on Feb. 10 from 6 p.m. to 7 p.m. for an informative discussion of life- and estate-planning issues. The Planned Giving Chat will discuss the steps you can to take to ensure that your wishes regarding your estate will be carried out. (All times are Eastern.)

A Practical Ventilation-Respiratory Tips Chat will be held from 5:30 p.m. to 7 p.m. Feb. 26, led by two respiratory therapists.

Chat with the staff writers and editors of The MDA/ALS Newsletter and Quest on April 8 from 5:30 p.m. to 6:30 p.m. The chat, led by MDA Director of Publications Carol Sowell, will be an opportunity to tell MDA’s Publications staff what kinds of articles you’d like to see.

Meet MDA Medical and Science Editor Margaret Wahl on May 6 from 5:30 p.m. to 6:30 p.m., and learn how MDA reports news and other stories about research in neuromuscular diseases. The Medical/Science Reporting Chat will fill you in on how MDA follows medical and scientific news.

Several of MDA’s peer-led chats involving topics of interest to families affected by ALS will continue in 2004. They are:

• Living with ALS for people with ALS and their caregivers, every Monday, 4-6 p.m.

• Spouse-Caregiver Chat for spouses and caregivers of people with any neuromuscular disease, every Monday, 3:30-4:30 p.m.

• Positive Thinking every Thursday, 8-9 p.m.

Watch www.mda.org/chat/calendar.html for announcements of new chats, including special expert-led chats on medical and research topics.

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NATURALLY SPEAKING

Voice Synthesis Study Advances

by Margaret Wahl

The first phase of a project whose goal is to allow people with ALS and similar conditions to "speak" through a computer in their own voices has come to a successful completion, says investigator Tim Bunnell of the Speech Research Laboratory of the Alfred I. duPont Hospital for Children and the University of Delaware in Wilmington.

The study is moving into a second phase, and researchers are seeking people familiar with augmentative, alternative communication (AAC) programs.

Tim Bunnell works on speech recording in his lab's sound booth. He’s trying to develop software that would generate speech in the user’s own voice.

Bunnell, who has a doctorate in experimental psychology and specializes in speech perception and production, is working with an academic rehabilitation engineering group. They hope to develop software that would allow people who expect to lose speaking ability to record and store a variety of sounds from which a computer will later generate speech.

The software now under development is far more sophisticated than the AAC programs now available, some of which use prerecorded phrases the user has banked. The new product would let the user to say anything in his or her own voice after selecting letters or words from a computer screen.

Grateful to Early Bug Finders

During the first phase of the software development (see "Study to Evaluate Speech Synthesis," June 2002), the researchers recruited people with ALS and other disorders to try out the system and help discover its pitfalls and strengths.

Bunnell said, "We had a great deal of help from quite a few people, and we can’t thank them enough. We’re incredibly grateful to the people who helped us with the development phase. They did it in many cases with no guarantees that they would be helped, but only that they might be helpful to others."

The initial volunteer group, which included about 20 people with ALS, found that the software worked better for those able to produce a relaxed, natural speech without wide fluctuations in tone or emphasis, Bunnell said. Speech that was "breathy," as it can get in ALS, was all right, he said, but slurred speech was a problem.

The investigators also found that the software couldn’t handle certain accents, such as those used in Australia.

Phase 2 Digs Deeper

The goal of the second phase, Bunnell said, is to make the new speech software work with existing AAC products, such as EZ Keys software, a communication program available through Words+ (www.words-plus.com), and software available through Enkidu Research. (See "DynaVox Systems.")

These programs use word prediction, a function designed to save keystrokes by allowing the user to enter an abbreviation or the first few letters of a desired word. The program then tries to "guess" the rest of the word or phrase and offers a list of choices to complete the entry.

Bunnell says the developers are seeking participants to install the new system on their home computers and experiment with it. He cautions that the endeavor at this point is "not trivial" and "not for the faint of heart."

The investigators are looking for people who are very familiar with and comfortable using computers, and prefer that users have an engineering background. Details and downloadable software can be found at www.asel.udel.edu/speech/DownloadInstr.html.

Volunteers will be asked to register but won’t be placed on any mailing lists or subjected to any advertising or fees.

Questions can be addressed to the text-to-speech project investigators at tts@asel.udel.edu, who will respond as time permits, Bunnell notes.

Flexible Product Is Long-Range Goal

Bunnell says the speech-recording part of the system will probably be available in the future only through speech-language professionals, because of its likely high price tag and its complexity.

However, once a professional has assisted the user to put his voice into the system, the resulting program should be useable by anyone, anywhere.

With funding from the National Institutes of Health, the developers are now working with a Delaware software company to move their product from the academic to the commercial realm.

For continuing information about the project, visit the lab’s Web site at www.asel.udel.edu/speech.

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AAC News: DynaVox Systems Buys Enkidu Research

Two manufacturers of popular augmentative, alternative communication devices became one last month when DynaVox Systems of Pittsburgh acquired Enkidu Research.

DynaVox officials announcing the sale said that Enkidu products would continue to be available as a separate brand under the DynaVox Systems name. Eventually, the company will merge product lines and combine the best features of each, they said.

Current owners of Enkidu’s Impact products will still be able to receive technical support by calling (800) 297-9570 from 9 a.m. and 6 p.m. EST, or e-mailing support@enkidu.net for a response within 24 hours.

Current Enkidu customers will eventually have access to extended service hours offered by DynaVox (8 a.m. to 8 p.m. EST), according to information about the merger at www.enkidu.net.

DynaVox also offers 24-hour technical support at its "online knowledge base" available at www.dynavoxsys.com. People interested in buying an Impact device will have access to DynaVox’s funding team.

DynaVox President Joe Swenson said the union of the two companies would "allow us to deliver better communication solutions to those with significant speech disabilities much more quickly."

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A NEW LIFE WITH ALS

Making Peace With Circumstances

by Steven and Jennifer Bishop

It’s almost a relief to have the holidays over and the New Year in full swing.

We had a wonderful time with Christopher on his winter break and had mixed feelings when he went back to school. It certainly frees up our time during the day — 5-year-olds tend to monopolize that. However, there was a real joy in the relaxing days spent with our little family with no pressure to be anywhere or do anything.

With Christopher back in school, our attention is focused on our goals in life. If you don’t have any, make setting them your first one. We’ll continue our mission to raise awareness of ALS, gather funds for research, and provide help and hope to anybody affected by this dreadful disease.

Healing

We recently participated in a personal achievement seminar focusing on the core issues of life, such as: What causes upset for you and why? Then, the process of healing these core issues was addressed, so participants could learn to stop them from sabotaging their dreams.

We attended a similar seminar by the same facilitator about nine years ago, and it changed our lives. Perhaps it’s one of the reasons why we look at ALS as a blessing instead of a curse.

Everyone handles the same circumstance, ALS for instance, in different ways. ALS has a way of triggering our worst fears — such as death, financial insecurity, loss of companionship. If we can find a way not to fear these things and come to a place of peace instead, then perhaps ALS can seem less devastating.

ALS has happened to us whether we fear it or not. That’s the circumstance. We have to make peace with where we are in our lives right now.

Freedom

Imagine the possibility that this life situation (ALS) might be the perfect opportunity to start or do something you’ve always wanted to — taking a trip, starting a new hobby, writing a book, mending or ending a relationship, becoming the person you’ve always wanted to be.

This could be a time in your life in which you have complete freedom to go, do and see (internally or externally) whatever has been put off by other circumstances.

We realize that people with ALS are in different stages of this mysterious disease. But the physical limitations of our bodies don’t have to invalidate the process of dreaming, either for those with the disease or their caregivers.

We’d like to leave you with a thought expressed at the seminar: Peace is love at rest and joy is love at play.

We hope that 2004 brings you much peace and joy!

(To find out more about the seminar we attended please visit www.l-c-a.com.)

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ALS IN THE NEWS

Several significant recent press stories about ALS have involved people registered with MDA.

In November, the Huntsville, Ala., Times ran a five-part series of reports about members of a local MDA/ALS support group. The report, "Living With ALS," can be seen, without its powerful photos, at www.al.com/specialreport/huntsvilletimes/?als.html.

On Dec. 16, National Public Radio’s "All Things Considered" ran a commentary by Darcy Wakefield, a 33-year-old community college teacher from South Portland, Maine, called "ALS Ends Running Days." Hear it at www.npr.org/features/feature.php?wfId=1550798.

Erin Brady Worsham, an artist featured in the MDA Art Collection, was profiled in the Nashville Tennessean on Dec. 28. See her story and examples of her artwork at www.tennessean.com/features/living/archives/04/01/44627515.shtml?Element_ID=44627515.

If you’re interviewed in the media about your experience with ALS, don’t forget to mention the services MDA provides in your community, and give the reporter the telephone number of your local MDA office. Please let the MDA office know if you’ve been contacted for an interview.

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