Houston Couple Named to Co-Chair MDA
by Tara Wood
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.
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,
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
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
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,"
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.
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.)
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.
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
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 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
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
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
5. Take charge of your treatment.
Pick your health care providers carefully. Remember: They work for
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
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.
Coach Finds Strength in Family and Football
by Tara Wood
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
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.
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
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
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
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
A ‘Just Keep Doing It’ Attitude
Evans family business is providing motorcycle escorts for funeral
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."
Plan Ahead for Disability With a Power
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
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
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
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
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
- 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
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
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
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
Greg Gadarian, a Tucson, Ariz., attorney specializing in disability
issues, provided guidance for this article.
MORE ON LEG SWELLING
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
of California Los Angeles
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
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.
A NEW LIFE WITH ALS
Thanks for a Life-Changing Year
by Steven and Jennifer Bishop
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.
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
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
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
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