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    Home> Publications > MDA/ALS Newsletter March 2004 v9 n3
Your Source for the Latest Information About ALS Vol. 9, No.3 March 2004

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Houston Couple Named to Co-Chair MDA ALS Division

by Tara Wood

Diane HUberty  
Reda and Christopher Rice

Christopher and Reda Rice insist they’re "just regular people" doing the best they can in an extraordinary situation.

Yet those who know the Houston couple contend that there’s nothing regular about how they’ve responded to Chris’s diagnosis of ALS — with unblinking determination.

That’s why the Rices were invited to become co-chairpersons of MDA’s ALS Division, a role in which they’ll help raise awareness of MDA’s efforts in the fight against ALS through media interviews, speaking engagements and public service announcements nationwide.

It’s a role the couple is excited to use as an opportunity to share vital information about the disease, and to spread hope and empower others who are affected by ALS.

"It’s humbling to represent such a great group of people, a great group of families," said Reda Rice. "We’re no different than the other 35,000 families that are facing this disease. Majority of them, they just have the most positive spirits, they’re fighters."

Chris Rice, 38, received a diagnosis of ALS (bulbar onset) in October 2001. His speech is slurred, and his mobility is beginning to be affected, although he’s still ambulatory.

He occasionally uses a communication device, particularly for phone conversations when he’s working.

Whenever Possible, It’s Life as Usual

Chris credits his job with keeping his mind off "what could be" and helping him focus on living his life.

Diane HUberty  
Chris and Reda Rice have three children, (from left) Shelby, 4, Tori, 8, and Mason, 6.

He manages information technology for Lincoln Property, overseeing a region that includes the Texas cities of Houston, Austin and San Antonio, plus Phoenix.

Reda is a stay-at-home mom who is, among many things, the "bus driver" for the couple’s three children, Tori, 8, Mason, who turns 6 this month, and Shelby, 4.

The Rice children are typical kids who love to play outside. Often, the Rice home is the center of neighborhood activity, Chris said.

A very spiritual family, the Rices say their religious faith has buoyed their ability to cope with ALS.

"The reason why I am doing so well is because of God, and everything after that is gravy," Chris said.

"The thing about faith for me that helps is that there’s more to life than just this," Reda said. "I look at it like, I guess God is using us in this way now. I don’t know what God’s plan is in all this, but I know he has a plan for our lives individually."

Equally important is the support they receive from MDA, the Rices said. Chris makes regular visits to the Ronny & Linda Finger MDA/ALS Center in Houston, where he’s seen by director Stan Appel, a nationally known ALS authority.

The Rices said they get peace of mind from MDA, knowing they can let someone else do the worrying about ALS. For instance, they appreciate that MDA-funded researchers are working around the clock to find a cure for ALS, and that a variety of experts are available at clinic for whatever Chris’ needs might be.

"That’s what MDA does for us — they allow us to live our lives," Reda said. "We go to clinic every three months, and that’s when we address our ALS issues. They help guide us with what we might need next, and we get to meet all the other families. That’s what makes it feel like a family to us."

A Message to Spread: Every Dollar Counts

Another message the Rices hope to share is the power of fund raising, as a way to help find a cure and to "do something" to help someone with ALS.

"There are 300 families at the ALS clinic in Houston alone. If they could each raise $1,000 a year, that’s a lot of extra money," Reda said. In fact, friends, church members and co-workers have been actively raising money — $52,000 — on Chris’ behalf since they heard about his diagnosis.

And even the smallest donations can make a big impact, they said.

"All the people who raised money on my behalf did it at $75-a-plate lunches and garage sales," Chris said. Many of his co-workers pay to wear a T-shirt with his name and picture on it on Fridays.

"It’s stuff like that, all the little tiny things — they really add up."

And of course, the two are determined to spread a message about the urgent need for a cure.

"That is just huge, and it’s not just for Chris, it’s for all the people that we represent that can’t even be here to represent themselves," said Reda.

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New Studies Support Roles of Inflammation, Oxidative Stress in ALS

by Margaret Wahl

Three new studies confirm the roles of two long-suspected factors in the development and perpetuation of ALS.

Inflammation is a set of biochemical changes brought about by the immune system, while oxidative stress occurs when an excess of electrically charged, oxygen-containing molecules damage DNA and other cellular substances.

Inflammation

David Jayne  
Robert Brown

Robert Brown, director of the MDA/ALS Center at Massachusetts General Hospital in Boston, was among the authors of a study of inflammation published in the Jan. 15 issue of Physiological Genomics.

The researchers looked at postmortem samples of spinal cord tissue. They found a definite "pro-inflammatory state" in the ALS tissue compared with samples from people who didn’t have ALS.

They also found that genes involved in the inflammatory process in ALS were selectively activated. (This finding doesn’t imply anything is wrong with the structure of the genes; it means they’re "turned on" because of the inflammatory process instead of being in their usual "turned off" condition.)

David Jayne  
Stanley Appel

Stanley Appel, director of the Ronny & Linda Finger MDA/ALS Center at Baylor College of Medicine in Houston and an MDA research grantee, was part of the team that conducted another ALS tissue study, published in the February issue of Annals of Neurology.

In this study, the researchers also compared postmortem spinal cord tissue samples. They looked for evidence of dendritic cells, key players in an inflammatory response in the nervous system, and for traces of the chemical messenger MCP-1, which can recruit these cells from the blood into the nervous system.

They found that both dendritic cell surface markers and MCP-1 were elevated in the tissue from ALS patients.

Two drugs — minocycline and celecoxib (Celebrex) — that combat inflammatory responses are now being investigated in ALS clinical trials.

Oxidative Stress

In the third study, published in the Jan. 27 issue of Neurology, Appel and MDA research grantee Jenny Henkel were authors. The researchers found that an enzyme that repairs damaged DNA was elevated in several areas of ALS brain tissue, not just in the areas that control muscle movement.

The enzyme, known as PARP, is apparently brought into play when oxidative stress has damaged DNA.

The investigators concluded that widespread oxidative damage to DNA occurs in the brains of people with ALS and that some parts of the brain are able to resist or repair it. Other areas, particularly the motor neurons (which control muscle movement), apparently can’t keep up with the devastation.

The researchers suggest that the lack of damage in other brain areas could be due to a superior ability to handle calcium on the part of these cells.

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10 Tips for New ALS Patients

by Will Hubben

I was diagnosed with ALS in July 1998. Looking back at almost six years of living with ALS, I can identify a number of coping mechanisms that have helped me immeasurably, as well as a few that would have helped if only I’d followed the advice of the good people at my ALS clinic.

1. Be compassionate to yourself.

If you’re like me, your first reaction to being told you may have ALS was shock and fear. We all go through wild emotional swings when we hear such dreadful news.

Allow yourself to feel denial, grief, anger and whatever else you feel without criticizing yourself for it. It’s natural, and necessary, for you to experience powerful emotions. Many feelings will arise again and again as ALS progresses.

This too will pass. Being gentle with yourself is a big help.

2. Reach out to family and friends.

Many people will want to help, but not know how. Talking openly to a family member or friend about what’s going on for you will help both of you cope.

Ask for help with preparing meals, running errands, taking you to the movies or doing household chores. Building your support network will help you and your primary caregiver, and it lets family and friends get involved.

David Jayne  
Will Hubben

3. Learn about ALS.

Knowledge is power. ALS tends to make people feel powerless. Learning all you can about the disease, about supplements and drugs that might slow progression, and about current research, can help empower you.

Sharing what you learn will help raise awareness about ALS and the need for more research money.

4. Do everything you can for your health.

Improve your diet, quit smoking, take up yoga and/or meditation, practice positive visualization, get plenty of sleep, develop your own regimen of helpful vitamins. Every little effort will help you, both physically and mentally.

5. Take charge of your treatment.

Pick your health care providers carefully. Remember: They work for you.

Talk to your primary care provider and your neurologist about any vitamins and supplements you may want to take. Ask lots of questions. If a health-care professional doesn’t patiently and respectfully answer (or research) all your questions, fire that person and find someone else.

Don’t be passive about your treatment options. You’re always in charge.

6. Develop a relationship with a major ALS center.

MDA’s 30 ALS centers across the country, as well as its 230 hospital-affiliated clinics, have lots of experience with ALS. They generally take a multidisciplinary approach with ALS patients, and can be helpful at every stage of the disease.

The experts at these centers are usually the first to know about potential treatments and upcoming clinical trials. Go to www.als-mda.org/clinics/alsserv.html for a list of MDA/ALS centers.

7. Do some things you’ve always wanted to do.

Take that trip to Europe, spend more time with your family, jump out of an airplane, write your book, raft the Grand Canyon.... Whatever it is, go ahead and do it. In a few months you may not be able.

8. Find ways to help others.

One of the best ways you can help yourself is to help other people with ALS. Raise money for research, join advocacy efforts, volunteer for clinical trials, attend support groups and reach out to those who need emotional support.

Giving what you can enriches your life as well as the lives of others.

9. Practice hopeful, positive thinking.

Having a positive attitude in these trying circumstances really takes practice, but it’s worth it. Not only is your moment-to-moment experience improved, but most experts would agree you also improve your body’s resistance to disease processes.

Remaining ever-hopeful helps me to enjoy my life, in each moment, as much as a hopeful person not facing ALS. There’s a lot of promising research going on in many different areas of investigation. Remember: Help is on the way.

10. Stay ahead of the curve.

Get a wheelchair when walking difficulties begin, even though you can still walk. Get a feeding tube before you lose weight. Begin using augmentative communication aids before you need them. Get respiratory support by using a BiPAP at night as soon as possible.

By taking these and other steps early, you remain in control. No one with ALS regrets doing these things early; many regret waiting too long.

Will Hubben, 49, of El Cerrito, Calif., is an artist and marketing professional who's followed his own 10 tips since 1998. In 2000, he started the ALS Research Digest, which delivers the latest ALS research and scientific news and abstracts to thousands of people with ALS, researchers and clinicians weekly. He also contributes regularly to the e-mail newsletter ALS Digest. Back issues are at www.alslinks.com/alsdigestarchives.htm.

 

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Coach Finds Strength in Family and Football

by Tara Wood

David Jayne  
Diane and Don Evans

It’s probably a rare person with ALS who can count on a network of support that includes hundreds of kids, teenagers and young adults.

But for Dallas’ Don Evans, who received an ALS diagnosis in 1999, that’s exactly the case.

In addition to his family’s extraordinary care and support, Evans, 49, is bolstered by boys and young men he’s coached for the past decade in a local Pop Warner football league.

Coaching the Kids

Evans has spent several years "taking Kenneth (their 18-year-old son) to practice for football and our daughter (Marakia, 13) to practice for cheerleading," said his wife, Diane.

The team he coaches, the Salvation Army Cedar Crest Comets, earned a national championship title in 1995 when Kenneth was 10, and Evans can count a handful of current collegiate football players among his alumni.

Evans, who uses a ventilator for assistance with breathing, continues to coach football from his power wheelchair. He relies on Kenneth to take him to practice and assist him as his "illustrator," by diagramming plays and demonstrating techniques.

Football and his players (ages 10 to 12) — many of whom Evans said are "underprivileged" and come from hard family situations — help keep his mind on something other than ALS.

"He loves going out there," Diane Evans said.

David Jayne  
Kenneth Evans’ senior high school photo is a collage that includes a shot of his father coaching football.

"As a matter of fact, we had one of our biggest arguments this year because he was just getting out of the hospital with pneumonia and it was raining and cold. He thought he was going to the football game. I asked him had he lost his mind?"

Evans makes a point of attending players’ games when they graduate beyond Pop Warner. He always asks somebody to "go touch a player on the shoulder and let them know I’m there.

"Then, it seems like their attitude gets different when they’re on the field, that they know I’m watching them," he said.

Beyond tackling and touchdowns, Evans said, the Comets’ coaching staff teaches the youngsters lessons about life.

"I’m teaching them a way of life," he said, by building their self-esteem, teaching them to be part of a team and helping them learn to be successful in all aspects of life.

Family Support Beyond the Ordinary

Football and cheerleading are extracurricular activities for the Evanses. The family owns and operates a motorcycle escort business that guides funeral processions through the city’s many intersections.

Evans, no longer able to ride a motorcycle because of ALS, now "just bosses," said Diane Evans. The couple’s oldest children — Donald Hollins, 29, and Oscar Anderson, 28, (from previous marriages of Don and Diane) — have filled in where Don left off.

Diane is business manager of the family firm, and works full time at a nearby General Motors plant, a job that provides crucial health insurance benefits.

Teens Kenneth and Marakia take care of their dad’s many needs during the day. They also take him along to their favorite activities, like shopping or watching school basketball games.

"When my wife goes to work, me, Marakia and Kenneth, we load up and go to a basketball game," Don Evans said. "We hit the streets!"

Kenneth has postponed his plans for going to college to care for his dad, and plans to become certified to coach Pop Warner football this year.

Evans fully appreciates the magnitude of what his teens have taken on by regularly caring for him. In fact, he sees them learning valuable lessons about life and its priorities, while balancing their own activities, such as Marakia’s band practice and cheerleading.

"They help me keep going. The more they help me, the more I keep going, and then the more they learn about this disease. That will help them too," Evans said.

"My family, they are number one. If it weren’t for them, I don’t know where I’d be right now," he said. "My wife — she works every day, and she gets up with me every night, five or six times a night."

A ‘Just Keep Doing It’ Attitude

David Jayne  
The Evans family business is providing motorcycle escorts for funeral processions.

The Evans family has found that staying tough has helped them cope with the numerous challenges of ALS.

"The main thing is not to give up hope. Keep going. Keep trying to live life at its fullest," said Diane Evans, adding, "It takes energy to keep up with Don Evans!"

Evans advises others with ALS to find a way to continue pursuing things they enjoyed in life before the disease.

"I just refuse to quit. I could just sit there and feel sorry for myself," he said. "When I first was diagnosed, I was devastated… I would cry every day. Eventually, I had to wipe the tears and keep on doing what I was doing."

With the loving support of his family and friends, Evans has firm plans for the future: "I’m going to keep on moving. I’m going to be out there again this year — coaching. I’m not going to stop."

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Plan Ahead for Disability With a Power of Attorney

by Christina Medvescek

One way to stay a jump ahead of ALS is to consider who will handle your financial affairs if you lose your ability to make or communicate decisions. Otherwise, a time-consuming and potentially costly court procedure may be necessary for a spouse, relative or companion to handle your financial transactions or sell your property.

Power of Attorney

David Jayne  

A power of attorney grants one person the legal authority to act for another. It’s important to name this person — called an agent — in advance because you can’t confer power of attorney once you’re incapacitated.

Granting someone else power of attorney doesn’t take away your own power to handle your finances for as long as you can.

Incapacitated means being unable to make or communicate decisions. So as long as you can communicate you still can "sign" important documents even if you can’t write, by giving instructions to someone to sign for you, in the presence of a notary.

Having a power of attorney in place is a safeguard against a time when you might not be able to make or communicate a decision, for whatever reason.

There are several kinds of power of attorney. A general power of attorney is for situations when you’re temporarily unavailable to handle your own affairs (for example, due to surgery or extended vacation). But this power automatically ends if you become incapacitated.

More appropriate for someone with ALS is a durable power of attorney, sometimes called durable power of attorney for finances. Its "durable" nature ensures that your agent can still act on your behalf after you become incapacitated.

Some people choose to create a springing power of attorney that goes into effect only when they become incapacitated. This requires creating a way for others to decide that the time has come to "spring" the power of attorney.

A durable power of attorney for health care authorizes your agent to make medical and health care decisions if you’re unable to communicate your wishes. This type of authority will be covered in a later article.

What Powers Are Given?

Roger W. Anderson, author of Plan While You Can: Legal Solutions for Facing Disability (1stBooks, 2003), suggests thinking carefully about the financial tasks you do over the course of a year before drawing up a durable power of attorney. Some common powers are:

  • Writing and cashing checks
  • Handling real estate and other property transactions (even when jointly owned)
  • Collecting Social Security
  • Medicare and other government benefits
  • Handling investments
  • Handing transactions with banks and other financial institutions
  • Filing and paying taxes
  • Operating a business
  • Making gifts to individuals or charities
  • Managing your retirement accounts

Choosing an Agent

The key qualities to look for in an agent are trustworthiness and financial decision-making ability. Do you trust this person to look out for your best interests, and not simply his or her own?

Many people choose a close family member or friend as agent. Lawyers or other professionals can be appointed, although they usually charge a fee.

It’s possible to appoint more than one person as an agent, as long as they can communicate and can get along well enough to make joint decisions. Don’t appoint joint agents just to keep your adult children happy, if they’re likely to squabble over every action. You also can appoint backup agents in case the original person can no longer serve.

A power of attorney can be revoked — undone — at any time. If your spouse is your agent and you get divorced, the power of attorney is automatically revoked.

How Do You Set Up a Power of Attorney?

The simplest way is to hire a lawyer to draw up a document based on your needs and wishes. But you also can do it yourself. Standardized power-of-attorney forms are available online, through bookstores and sometimes the state health department or attorney general’s office. Banks and title or escrow companies also usually have forms.

If you draw up your own document, be sure the language is both broad enough and specific enough to allow your agent to handle a variety of financial transactions. In particular, real estate companies can be picky about letting someone else buy or sell your property. Consider filling out the power-of-attorney forms provided by your bank and mortgage company if you’re concerned they may not honor your own document down the line.

Also take care not to sign a standardized form that transmits powers you don’t want to give, like the power to commit you to a mental institution.

To be legal, the document must be notarized. Although laws vary from state to state, it’s wise to go above and beyond what’s required and have two witnesses sign the document in the presence of a notary. Neither witness should be the person named as the agent.

Although thinking about the future with ALS can be troubling, people often report a feeling of calm once they’ve taken time to make a plan ensuring their finances will be handled appropriately no matter what happens.

Greg Gadarian, a Tucson, Ariz., attorney specializing in disability issues, provided guidance for this article.

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MORE ON LEG SWELLING

Dear Editor:

Christina Medvescek’s article "Don't Let Leg Swelling Go Untreated" (February) is very good.

One of the important additional causes for leg swelling that I would identify is cor pulmonale. This occurs when a person with a neuromuscular disease, such as ALS, develops respiratory muscle weakness and consequent poor ventilation and cough.

The ability to breathe adequately is often worse at night. Cor pulmonale, or right-sided heart failure, with ankle swelling, occurs due to low oxygen levels due to underventilation (hypoventilation).

Thus, I have seen ankle swelling as the first indication of respiratory failure in people with neuromuscular diseases such as ALS. Many patients and many physicians may not consider that ankle swelling may be due to respiratory muscle weakness.

Edward Anthony Oppenheimer, MD, FCCP
Pulmonary Medicine
University of California Los Angeles

 

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ALS Online

David Jayne  

In MDA’s series of expert-led Clinical-Research Chats, the following have been slated for March and April:

Nutrition and Exercise in MD Chat hosted by Mark Tarnopolsky from the Neuromuscular Disease Unit at McMaster University Medical Center in Hamilton, Ontario. March 10 from 5:30 p.m. to 6:30 p.m.

ALS Inheritance and Genetic Research Chat hosted by Nailah Siddique, research coordinator for the Neuromuscular Disorders Program at Northwestern University Medical School in Chicago. March 24 from 5:30 p.m. to 6:30 p.m.

Be sure to check out the 2004 Experts Clinical-Research Chat schedule at www.mda.org/chat/cli-res-host.html.

Also coming up:

Chat with the staff writers and editors of The MDA/ALS Newsletter and Quest. April 8 from 5:30 p.m. to 6:30 p.m.

The MDA Medical/Science Reporting Chat May 6 from 5:30 p.m. to 6:30 p.m.

Find out how you can join in a chat at www.mda.org/chat/calendar.html.


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A NEW LIFE WITH ALS

Thanks for a Life-Changing Year

by Steven and Jennifer Bishop

The Bishops  

The time to change the guard is upon us, and we’d like to reflect on what an honor and privilege it’s been to serve as co-chairpersons of MDA’s ALS Division over the past year and a half.

From the beginning of our service in late 2002, it’s been our mission to bring greater awareness of ALS, raise funds for MDA’s research program, and provide help and hope to those affected by this terrible disease.

Highlights

We taped three videos to be distributed to families newly facing ALS and introduce them to the benefits of participating in a MDA support group. We taped a television public service announcement that’s been aired nationally for a year.

Early in 2003, we spoke at a national conference of MDA’s Health Care Service Coordinators. We were able to convey what a powerful impact they can have on the fragile families they deal with.

In the summer, we gave the patient and advocate side at a conference of dedicated doctors, clinicians and biostatisticians who are working hard to find treatments or cures for ALS.

We were honored to be on the cover of Parade magazine’s Labor Day weekend issue and to help draw viewers to the Jerry Lewis MDA Telethon. To this day we receive positive correspondence from the impact of that article.

On the Telethon, we shared our ALS story with the millions of people watching.

Our monthly articles in this newsletter have been intended to give readers some thought-provoking ideas about dealing with ALS and assure them they aren’t alone.

Continuing to Serve

We’ll continue, whenever and wherever possible, to spread the word about ALS, raise funds for research, and provide help and hope. These objectives are the basis for our "new life with ALS."

We’d like to thank everyone who’s helping in the fight against ALS, whether personally, publicly, financially or through research. This disease can deteriorate our bodies but it can’t take our spirits.

Our opportunity to serve the Muscular Dystrophy Association gave us purpose when this insidious disease had stripped it away. We hope we’ve made a difference and, when the cure is found, we’ll know we had a part in it.

We’d especially like to thank Jerry Lewis, MDA National Chairman, humanitarian and friend. All year round he selflessly gives of himself to his "kids," including a 38-year-old man who will forever be changed by Jerry’s unconditional love and passion for life.

Steven and Jennifer Bishop live in Arvada, Colo., with their 5-year-old son, Christopher.

 

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