Fun With Frances: Tales From an Emergency Pet Shelter
by Christina Medvescek
Kathy and Paul Ball drove to Florida on Sunday, Aug. 29, with nary a thought about hurricanes. At the last minute they decided to bring Kathy’s manual wheelchair, which she recently had begun using for long distances and which would come in handy at the hospital where her father was having heart surgery.
Little did they know that before the trip was over, Kathy would spend long sweaty, smelly, scary hours sitting in that chair, trapped by Hurricane Frances in an emergency pet shelter with an odd collection of people and critters.
’Oh My Gosh!’
Kathy Ball, 55, of Taylor Mill, Ky., is a self-described “90-mile-an-hour” kind of person. She’s had ALS symptoms for two years, including cramping, leg weakness and speech/breathing issues, and is seen at MDA’s clinic at the University of Cincinnati.
Ball’s parents, Donald and Virginia Newburn, live in Edgewater, Fla. In mid-November, the Newburns successfully rode out Hurricane Charley in their manufactured home, but her father’s heart trouble was aggravated by the stress. Two weeks later, doctors ordered immediate heart surgery. Kathy and Paul rushed down to be by his side.
On Thursday night, when her father was recovering well in intensive care, police with bullhorns rolled down the Newburns’ street announcing a mandatory evacuation.
“I thought, ‘Oh my gosh, there really is something to this hurricane thing,’” Ball says.
Her father could safely stay in the hospital, but the rest of the family — Kathy, Paul, Virginia and Kathy’s sister, Joann Davis of Atlanta — had to go to a shelter.
Although a special needs shelter was available for wheelchair users, it wouldn’t accept her mother’s beloved cats, Dudley and Tigger. The nearest pet-friendly shelter was 32 miles away at the Volusia County Fairgrounds.
Packing up snacks, water, bedding, lawn chairs, cat food, “and half of everything Mom owns,” the group set out for the fairgrounds early Friday. It was a gorgeous day. They wouldn’t change clothes again until Monday night.
The Wait
At the huge fairgrounds exhibition hall, humans and pets (which had to be caged at all times) were assigned back-to-back 5x7-foot plots. Because of Ball’s wheelchair, her group was given two plots.
She was pleased to find the building wheelchair accessible, but the air conditioning was freezing. “I thought, gee, can they turn it down a little? Little did I know…”
Saturday dawned bright, beautiful and bone dry. After spending a cold, sleepless night listening to barking and mewing, Ball was ready for some fun.
“I don’t sit around well,” she explains. “I said to Joann, let’s go for a roll.”
Outside, Joann discovered some extra orange safety cones and set up an obstacle course. “She pushed me through it quickly and the first time we hit a pothole, she liked to throw me out of that stupid chair,” Kathy laughs. “We had a blast, sitting outside talking to people walking their dogs.”
By evening, clouds from Frances’ outer ring brushed the sky, but the storm plodded along at 5 miles an hour. Bored, the sisters took to “naming” their shelter-mates. There was Birdman, owner of a nervous, motley cockatoo. Suspender Man’s cocker spaniel barked incessantly.
Tower Lady had a 7-foot-tall stack of cages containing cats, dogs, a chinchilla, and various birds and rodents. Tower Lady confided in the bathroom line that she’d just gotten out of jail. Apparently, the county jail had released all non-felon inmates and many had headed for the fairgrounds shelter.
That night Ball called her son in Kentucky. “I told him God called us two-by-two to the ark, but he hasn’t closed the door yet. And we’re getting ready to sacrifice the cocker spaniel.”
Jet Planes & Kitty Litter
When Frances hit, she hit big. About 1:30 Sunday morning, “I thought the roof was coming off,” Ball recalls.
“It sounded like jet planes taking off. It felt like the concrete floor was vibrating. You could feel rain blowing in when the wind lifted the metal roof. Everyone was deadly silent, even the cocker spaniel. It was scary.”
Within 15 minutes the electricity went out and the room quickly heated up to about 100 degrees. “That room was stinking,” Ball recalls. “There was body odor, people and animal bad breath, stinking fur, kitty litter... I have a newfound appreciation for Noah.”
Frances battered the shelter all day Sunday. A single generator-powered shop light enabled the Balls to play cards and chat with neighbors, but the heat and living conditions took their toll.
Kathy Ball says, “You try and hide it, but I was becoming miserable. I was tired, not eating, biting my cheeks and tongue, having swallowing problems. The wheelchair was hard to sit on all day, and I got stiff.” By Sunday night, “everybody was on everybody’s nerves.”
Sunday night, she says, “was the most interesting of all.”
A woman was arrested trying to sneak out (no one was allowed to leave). There was a heart attack, a heat stroke and a spider bite.
And Ugly Naked Fat Guy earned his name when he stripped off his clothes in the middle of the night and walked to the bathroom stark naked, accompanied by his cursing, complaining wife.
Home Again
Frances moved out early Monday, but flooding kept the family at the shelter until afternoon. Luckily, the Newburns’ house survived with minimal damage. Kathy and Paul stayed another week until the electricity came back on and her father was released from the hospital.
Now back in Kentucky, Ball says she still feels weak and her muscles aren’t recovering as quickly as she’d hoped. Does she wish she hadn’t gone? Her answer reveals the ongoing strength of her spirit.
“And miss all the fun? Oh no!”
ALS RESEARCH ROUNDUP
Cellular Transport Protein Implicated
A research group led by Mayana Zatz at the Biosciences Institute of São Paulo (Brazil) University has identified a mutation in a chromosome 20 gene as a likely cause of motor neuron diseases in some families. Motor neurons are the muscle-controlling nerve cells.
The gene carries instructions for a “vesicle-trafficking” protein known as VAPB. The mutation may disrupt an intracellular “conveyor belt” system involved in transporting substances inside the cell.
Zatz and her colleagues studied seven Brazilian families, all with the same genetic mutation, but each with a different motor neuron disease. In some families, the motor neuron disease was classified as “typical” ALS, while other families had a more slowly progressive form of ALS or spinal muscular atrophy.
In every case, the disorder was inherited in an autosomal dominant pattern, meaning only one genetic mutation from one parent is needed to cause the disease.
The researchers, who published their results online Sept. 15 in the American Journal of Human Genetics, noted that the data may improve understanding of motor neuron loss in ALS and may provide new targets for therapy development.
“The observation that some patients, although carrying the same pathogenic mutation, may have a much milder course is very interesting,” Zatz said. “If we can understand what ‘protects them’ from the deleterious effect of the mutation, this may open new, important avenues for the treatment of ALS.”
EmCell Investigation Shows Poor Results
Boston Globe reporter Gareth Cook recently traveled to Kiev, Ukraine, to investigate EmCell, which bills itself as having “the world’s largest clinical experience in embryonic stem cell transplantation for various diseases and conditions,” including ALS.
The reporter also spent more than two months with a Boston-area family that went to EmCell for treatment of their muscular dystrophy-affected son and interviewed other EmCell patients.
Although the clinic’s advertising suggests that it uses “embryonic” cells, which would be about five days old, the clinic director says it uses cells taken from aborted 2-week to 8-week-old fetuses. There’s no information available about how such cells are purified or tested, no animal experiments have been conducted, and treated patients haven’t been followed up at regular intervals, Cook said.
The Massachusetts boy experienced small improvements shortly after the treatment, but those later disappeared.
EmCell scientists haven’t published any papers in a scientific journal that’s reviewed by other scientists.
The EmCell articles are in the Sept. 26 edition of the Boston Globe, and can be read at www.boston.com/news/science, under “Recent coverage from the Globe.”
Parkinson’s Drug Helps Mice With ALS
A team of researchers in Germany and Israel published a report in the September issue of Neurology describing the possible benefits in ALS of a drug that’s now undergoing testing in people with Parkinson’s disease.
Albert Ludolph at the University of Ulm (Germany) and colleagues tested rasagiline alone and with riluzole, a drug approved for ALS treatment, in mice with an ALS-causing genetic flaw. They found that it prolonged survival in the mice but had somewhat confusing effects on function.
Mice that received the larger of two doses of rasagiline alone lived 29 days longer than untreated, ALS-affected mice, which was considered statistically significant. The longest survival occurred with a combination of riluzole and the higher dose of rasagiline — an average of 41 days longer than untreated mice.
Effects on motor (movement) function were more complicated. Early in the disease, mice treated with both drugs made less use of their running wheels than did untreated mice. Later, only the group treated with high-dose rasagiline remained more active than the untreated group.
Rasagiline and riluzole work via different mechanisms. Riluzole is thought to reduce the release of the potentially toxic chemical glutamate in the nervous system, while rasagiline may reduce a type of cellular damage called oxidative stress and may have a protective effect on mitochondria, the cells’ energy-producing units.
For up-to-date information on clinical trials in ALS, visit www.mda.org/research/ctrials.aspx.
VEGF Protein Helps ALS-Affected Mice
The naturally occurring cellular compound known as vascular endothelial growth factor, or VEGF, has been shown to play a direct role in nerve-cell survival, as well as to affect the growth and development of blood vessels.
Belgian researchers announced in May that, when VEGF genes were injected into the muscles of mice with an ALS-causing genetic mutation, they bolstered the number of surviving nerve cells, delayed the onset of ALS symptoms and extended life span.
Now, a Swedish research group led by Jan-Inge Henter at Karolinska Hospital in Stockholm, has improved motor performance and survival in ALS-affected mice by injecting the VEGF protein into the abdominal cavity. The report was announced in the October issue of Annals of Neurology.
Delivering a protein as a medication is generally more practical than delivering a gene, and approval from regulatory agencies is easier if genes aren’t involved.
Avanir Still Seeks Volunteers for Neurodex Study
Adults with ALS and an accompanying diagnosis of pseudobulbar affect are needed for a study of AVP-923, also called Neurodex.
Pseudobulbar affect is thought to occur in ALS because of an interruption of signals from the upper part of the brain to the lower (bulbar) part. In this phenomenon a person experiences emotional expressions, such as laughing or crying, that don’t match his or her actual emotional state.
INC Research of Raleigh, N.C., is overseeing the trial. For more information, contact INC Research at (888) 255-5300.
Avanir Pharmaceuticals, makers of Neurodex, announced positive results for the drug in controlling pseudobulbar affect in ALS in 2002. The formal findings were published in the Oct. 26 issue of Neurology.
A Legacy: Sharing Your Life Story
by Victoria J. Wolf
Almost four years ago our granddaughter, Kaity Miller, was born, turning our lives upside down, inside out and all the way around with joy. One year later, I was diagnosed with ALS. As I realized I might not have as many years with my beloved grandchild as I’d dreamed, I began considering how to tell her my life story.
How do you want to be remembered? What memories do you want to pass on to your children and grandchildren? What important lessons in life are worth sharing? What do you wish you had made time to say?
There are many ways to leave a legacy of yourself to future generations. The most important thing is to start right now, organizing your thoughts and deciding how best to communicate the past, present and future. Here are some ideas, based on my experience.
Audiotape
This is perhaps the easiest way to tell your story, especially for those of us with muscle atrophy in our hands and arms.
Several years ago I taped my Grandma Tince talking about her life. I asked questions that took her all the way back to her childhood, and then proceeded forward to the current year. I’ve listened to that tape many times over. It gives me great peace and comfort.
In addition, I learned firsthand information about the time period between the 1900s and 1950s. It was much better than studying it in a history book. I discovered that my family experienced the Great Depression, the “dust bowl” years, scarlet fever and polio, the world wars, and on and on.
Hearing about my grandmother’s joys, failures, losses and loves gave me great faith and assurance that I could get through anything, even ALS, because of those who went before me and what they endured.
Write It Out
Since I enjoy writing, this is an ideal approach for me. Of course, writing out your whole life story could take weeks, if not months and years, which our time clocks may not allow.
So, I suggest getting a memory book to help you along. There are many on the market at local bookstores and card shops, geared to both men and women. I enjoy Grandmother’s Memories to Her Grandchild: A Journal of Faith and Love, illustrated by Thomas Kinkade (Tommy Nelson, April 2004).
These books leave no story untold! They prompt you to cover your family, childhood, marriage, all the “firsts” (kiss, birth, home, etc.), goals, special holidays, favorite things, and everything in between. Through your entries, you share valuable information about your views of love, faith and hope. It’s a perfect way to write when you need a little help knowing where to begin.
Keep a Journal
A more personal way to write your legacy is to detail your daily life and thoughts, writing them down just as if you were speaking to someone. Journals don’t need to be edited for mistakes or to follow a pattern of time or subjects. Journaling is simply sharing from the heart those things you want future generations to know. You can pick up a journal any time, write down the date, and record as little or as much as you want.
I’ve found journaling to be a useful tool in coping with my ALS. Despite the disease, we have blessings that come in all forms and at all times. Perhaps today you saw a rainbow or a butterfly and you want to express how the beauty touched your soul and gave you hope. Perhaps you had fears today and you need to express them in order to encourage yourself to stay with the fight and not give up.
Journaling allows me to take a deeper look into my heart. That may be where you’ll find the story you need to share.
Videotape
Not many of us like being in front of the camera, but this method allows everyone to see you and read your body language. People can see you enjoying life through your smiles, and sense the sincerity in your voice. Those yet to be born can see the person everyone is talking about.
If you have access to a video or DVD camcorder, this may be the best way to leave your legacy.
Make a Scrapbook
Arranging old photos and memorabilia together in a scrapbook is a rewarding and creative way to share your life story.
You can find a wealth of materials for making beautiful scrapbooks at craft stores, online and at home shows. Begin by organizing your pictures chronologically, by event or however you choose. Decide if you want your books to be decorative or simple, serious or funny.
Create professional-looking pages by using precut borders and stickers, or use your imagination and design your own unique backgrounds.
Don’t forget to write about the events shown in your pictures! This will turn your photo collection into a treasured storybook for future generations to read and enjoy. Despite the time and expense of scrapbooking, I’ve found the end product to be a masterpiece that preserves my family’s history.
The most important thing is not how you share your story, but that you take the time to share it. My motivation is my granddaughter. To whom do you want your story to be told?
Family Caregivers
10 Ways to Get More Help
by Christina Medvescek
November is the month officially set aside to honor the nation’s family caregivers, and to advocate changes that support and empower their caregiving.
Organized by the National Family Caregivers Association, (www.thefamilycaregiver.org), National Family Caregivers Month 2004 — with the theme “Share the Caring!” — focuses on public policy, and patient and caregiver health and safety. Activities and presentations on these topics are being held across the country.
“One of the goals of NFC Month is to get family caregivers to realize that their own good health is the best present they can give their loved one,” says Suzanne Mintz, NFCA president and co-founder.
“This year we’re encouraging people to help family caregivers stay healthy by lending a helping hand. There are so many ways to help. Caregiving is more than a one-person job.”
Public Policy
One limited source of help is the federal National Family Caregiver Support Program, an Administration on Aging program available in all states through local community service agencies and area councils on aging. It’s geared toward family members who are caring for someone older than 60, and to caregivers over 60 who are caring for a minor child.
The program provides five basic services: information about available services to help caregivers; assistance in gaining access to services; individual counseling, support groups and caregiver training; respite care; and a limited number of supplemental caregiver services.
Several bills making their way through Congress also offer caregiver support. The Lifespan Respite Care Act (S. 538, H.R. 1083) authorizes $90 million in competitive grants to make respite more readily available to family caregivers, regardless of age or disability. The Ronald Reagan Alzheimer’s Breakthrough Act (S. 2533, H.R. 4595) also contains the full text of the Lifespan Respite Care Act.
Finding Help
Every caregiver knows it’s hard to get help. Asking can feel awkward and embarrassing, and there’s a chance you won’t get help even if you ask. But usually requests for help — directed to the right person or organization — have a positive result.
“A little bit of help can go a long way,” Mintz says. “A little bit of shared care can make a big difference.”
Here are 10 ways to get more help with the caregiving workload:
1. Convince yourself you need it.
List everything you do in a day to remind yourself it’s a big job. Overworked, exhausted caregivers are more prone to accidents and mistakes, as well as their own health challenges. The smart solution is to delegate. Asking for help is a sign of strength and coping.
2. Be clear about what you want.
Is it two hours of respite on Tuesdays? Round-trip rides to soccer practice for your youngest child? Know what you want and ask for it.
Avoid vague requests: “Maybe sometime you could stop by to visit with Al for a few minutes?” Make requests direct and specific.
3. Brainstorm sources of help.
Sometimes the same people get asked a lot, while others never are asked, even though they’ve offered help.
Consider neighbors and acquaintances who might be glad to do simple repairs or bring over a movie to watch with your loved one. Ask a knowledgeable relative to help sort out finances or insurance papers. Check out the phone book to locate church and youth groups, service clubs, scouting organizations, etc.
4. Get help getting help.
Ask a close friend or relative to ask people for help on your behalf. Using an intermediary often makes the process more comfortable for everyone.
Another resource is a personalized Web site, such as one offered by the for-profit site CareCircle (www.carecircle.com). These use the Internet to allow people to volunteer for times and tasks you post on the site.
5. Be simple.
People feel good about doing mundane chores like laundry, mowing, picking up milk or returning videos. Break larger tasks down into smaller jobs. These simple bits of help add up.
6. Seize the moment.
Keep lists of chores by the phone or in a purse, so when well-wishers ask, “Is there anything I can do to help?” you can tell them.
Or, ask if you can call them when you need something from the store or a short respite. If they say yes, call them.
7. Expect some hesitation or refusal.
People lead complicated lives. If they turn you down, remember they’re refusing the task, not you. Consider giving them a second chance another time, urges the Family Caregiver Alliance (www.caregiver.org).
8. Pay for some services.
Treat yourself to services you used to do yourself, like cleaning. A clean house lifts the workload and the spirits.
9. Get more information.
Learn from others’ experiences by attending local caregiver support groups or finding groups online. (See “ALS Online,” for more about MDA’s ALS chats.)
Call your area Council on Aging for lists of in-home services that are available in your area. Learn more about area hospice providers.
10. Advocate more help.
There’s an old saying, “Ask boldly and ye shall receive.” Good-hearted people often don’t know how to help until you tell them what you need.
Take the message to a wider audience by writing letters to the editor and elected officials about needed changes in public policy, so someday all family caregivers can get the help they need.
Staying Alive — Does Personality or Belief Make a Difference?
by Margaret Wahl
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Cheryl New says technology makes ALS "manageable" instead of "terminal."
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Alison Grossman, a clinical neuropsychologist associated with the Kessenich Family MDA/ALS Center at the University of Miami, says she got a surprise when she first began counseling ALS patients.
Grossman had worked with people who had cancer, AIDS, head injuries and a variety of other conditions, and found that depression was common. But when Grossman gave depression assessment tests to ALS patients, she found that “the majority of them were not depressed at all, not even close to clinically depressed levels.”
That seemed “counterintuitive” to her, and, working with neurologist Walter Bradley, medical director of the Kessenich Center, she began to formulate some research questions and goals to see if she could find out more.
Personality characteristics reflect a certain amount of genetic influence, the researchers reasoned. Perhaps the finding of a cluster of personality traits might help solve another piece of the genetics puzzle in ALS.
Last year, Grossman received an MDA grant to study the impact of psychosocial factors on ALS onset and disease progression.
Although she recognized that a study of personality traits would have some inherent pitfalls, because “personality” is hard to define and to isolate from mood and circumstances, Grossman nevertheless decided to see what she could find out.
She chose to question someone very close to the person with ALS, such as a spouse or close friend, and interviewed that person not more than six months after the ALS diagnosis.
She and her colleagues used a standard, “five-factor” personality test, which consists of 240 statements, with which the respondent can either agree or disagree. “He’s pretty set in his ways” and “He thinks he’s better than most people” are examples.
Putting Emotions Aside
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Will Hubben, who died in May, six years after developing ALS believed in using all that medicine has to offer and allowing grief and anger to come and go.
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Emphasizing that her findings so far are only preliminary, Grossman says her interviewees generally reported that, before the illness, the person with ALS had characteristically responded to stressful situations by forging ahead to meet a challenge, concentrating on what needs to be done, and suppressing painful emotions while doing it.
Grossman has now extended her studies to include observations of factors that bode well or ill for survival once someone has ALS. She doesn’t have much data yet, but she suspects some coping strategies will prove to be better than others and that psychological health could even have an impact on disease progression itself.
An ALS Personality?
Not everyone believes that certain personality traits are correlated with particular diseases.
Steven Albert, who describes himself as “the psychological guy” on the team at the Eleanor and Lou Gehrig MDA/ALS Center at Columbia University in New York, says he’s skeptical of that hypothesis.
Albert, an epidemiologist whose specialty is patient decision-making, says it’s hard to imagine an ALS-prone personality profile. Even if you found some correlations, he says, “you’re looking at people who already have ALS, and the disease could change many aspects of how you think about yourself.”
Albert doesn’t doubt that some personal factors are associated with longer or shorter survival with ALS. He puts these in the realm of deeply held beliefs about life and death, as well as coping skills, competency in disease management and self-care, and access to social support, rather than personality traits that affect disease progression per se.
Test of Time
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Erin Worsham decided to use every life-extending intervention possible once she learned she was pregnant.
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When Albert and his colleagues studied decision-making in ALS, they found that, “on the whole, people have a pretty good idea of what they want, and they don’t change their minds too much.” The results were published in 1999 in the journal Neurology.
When the researchers probed patients’ decisions about life-extending interventions, such as assisted ventilation or a gastrostomy tube, they found that wishes expressed early in the disease correlated pretty well with what people actually did later.
“I think the desire to make maximum use of life-extending technologies is in most cases part of a deeply held set of beliefs or an ideology, and less a function of mental health,” Albert says.
There are people whose attitude is “I would never consider living like that” and those who say, “I want to be around to see my grandchildren,” Albert says.
In a later study, published in Neurology in 2000, Albert and colleagues looked specifically at religiousness and spirituality and their effect on decisions made by people with ALS.
They found that those who were more religious or spiritual were less likely to want life-extending technology. People who described themselves as less spiritual or religious were more willing to use medical interventions.
Albert doesn’t think these decisions have much to do with mood, mental health or personality, but with “deep, well-entrenched, consistent approaches to the world.”
The religious perspective, he believes, may reflect a desire not to “manipulate the world.” He likens this view to positions about abortion and embryonic stem cell research. Those with a less spiritual point of view don’t mind such tampering if it prolongs life, he says.
Other Factors
Researchers acknowledge that genetic factors now being studied undoubtedly have a strong influence on how long people with ALS survive. Many of these factors are likely to be independent of personality traits and unrelated to decision-making, life skills or social support systems.
John Drury: A Television Legend Lives With ALS
by Kathy Wechsler
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John Drury and wife, Ann.
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After 40 years on the air, Chicago television legend John Drury retired as a newscaster from ABC Channel 7 (WLS-TV) in 2002. Two years later, Drury, 77, received a diagnosis of ALS, but it was 25 years ago that he first made an important connection with MDA.
Seeing Stars
While working as a reporter and anchorman for WGN-TV, Drury hosted the 1979 Chicago broadcast of the Jerry Lewis MDA Labor Day Telethon. As a host, he introduced the entertainment and interviewed people with neuromuscular diseases. Of course, another part of his job was to cheer on viewers’ donations.
Drury found his MDA experience exhilarating. He treasured his interviews with children affected by muscular dystrophy, and hearing stories about how families were helped by MDA warmed his heart.
“I realized the Telethon was important [before my diagnosis], but I realize its importance more now,” said Drury, who lives with his wife, Ann, in Wheaton, Ill. “Now that I’m a victim of ALS I understand personally in my daily life how important research is and how important it is to keep people comfortable.”
Steve Novak, who was a floor director during Drury’s career at WGN-TV, has produced the last four MDA Telethons on the superstation.
Drury brought a lot to WGN-TV, Novak said. Viewers could tell he loved his job and had a knack for presenting the news. He was well liked and respected by his colleagues and helped people climb the ladder in the television industry.
“People watched John because he brought a feeling of trust and honesty,” Novak said. “He made everybody feel very comfortable, and he was very believable.”
On a Roll
Drury moved between WGN-TV and Chicago’s ABC and CBS affiliates, working the longest at ABC7.
“I’ve done everything you could think of in broadcasting,” said Drury, who was elected to the Chicago Journalism Hall of Fame in 1996 and was named Journalist of the Year by Northern Illinois University upon his retirement.
“I worked with a great group of people. I was just delighted, and I enjoyed going to work every day.”
He also received the prestigious Silver Circle Award, the Better Government Association’s Distinguished Journalism award and three Chicago Emmy awards.
Among his memorable stories, he reported on Chicago’s first woman mayor, emceed the presidential debates in Chicago, and attended political conventions in various cities.
“It’s an exciting time now with the election coming up,” said Drury, who occasionally writes articles for the Chicago Tribune. “I yearn to be working.”
Hearing From Fans
“Since I was on the air, I’ve gotten hundreds of cards from people, wishing me well and praying for me,” said Drury, who’s having some muscle weakness and trouble swallowing.
Still able to walk on his own but losing strength and energy, Drury gets a large amount of support from the MDA/ALS Center at the University of Chicago Hospitals.
ALS Online
MDAchat, an online service for people served by MDA and their families, enables Internet users to obtain information about the latest advances and developments in neuromuscular disease research and to share insights on aspects of living with these diseases.
MDA offers a number of regularly scheduled chats
for those with ALS and their families. Internet
users can see a list of ALS-related chats
at www.mda.org/chat/calendar.html.
MDAchat features a weekly “Living with ALS” chat session every Monday from 4 p.m. to 6 p.m. During these sessions, people with ALS and their caregivers share information about their experiences. Those with ALS, their spouses and caregivers also are encouraged to visit the “Spouse-Caregiver” chat, which takes place every Monday from 3 p.m. to 4 p.m.
Every Thursday from 8 p.m. to 9 p.m., MDAchat holds a session titled “Positive Thinking,” which explores ways to foster a positive attitude for those living with neuromuscular diseases.
Expert guests, including top researchers and physicians, are frequently invited to chat, and their participation is announced on the calendar. Some chats focus on ALS research conducted at MDA/ALS research and clinical centers across the country, while others explore quality-of-life issues such as ventilation, caregiving, nutrition and exercise.
MDAchat invites people with ALS to become chat hosts. Look for the group application available at www.mda.org/chat/app.html to submit an idea.
To participate in MDAchat, users must register to obtain a password at no cost. Chat rooms open 15 minutes before the chat begins and close 15 minutes after the stop time. All times listed are Eastern. To determine local times, visit the World Clock Meeting Planner at www.timeanddate.com/worldclock/meeting.html.
Transcripts of all MDAchat sessions are posted at www.mda.org/chat/transcripts.html.
Wings Over Wall Street — A Sheer Success at $850,000
Celebrities and New York financial leaders joined together to raise $850,000 for MDA’s ALS research program at the fourth annual Wings Over Wall Street gala on Sept 29.
The VIP cocktail reception at the New York Marriott Marquis in Times Square included spirited bidding at live and silent auctions that turned out to be a hair-raising — or, rather, hair-cutting — experience for two of the event attendees.
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| Wings Over Wall Street
co-host Billy Baldwin lost his hair for MDA, and received a
kiss of thanks from event organizer Warren Schiffer. |
Actor Billy Baldwin, who co-emceed the event, and Jonathan Foster, a Long Island high school student, both offered to sacrifice their shoulder-length hair if the bidding for them to do so went high enough.
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Co-host Jann Carl shared a smile with award recipient David Memmott.
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Their offers worked: Baldwin garnered $50,000, and Foster $15,000. Each was shorn on stage by co-emcee Jann Carl and other volunteers.
Guests bid for items that included a round of golf with former New York Mayor Rudolph Giuliani, 10 minutes with Donald Trump, resort packages, and many baseball-themed items in honor of Lou Gehrig’s legacy.
Carl, weekend anchor and correspondent for “Entertainment Tonight,” is a member of MDA’s Board of Directors.
Special awards were presented to neurologist Stanley H. Appel of Houston, Andrew T. Knipe of Oceanside, N.Y., and David Memmott of Rumson, N.J., for their efforts to fight ALS.
Medicaid Choice Program Expands to 11 States
Eleven states were chosen in October to receive funding for an experimental program that allows Medicaid beneficiaries to direct their own care and live more independently.
The Cash & Counseling program provides a self-directed, individualized budget to recipients of Medi-caid personal care services. Participants use the money to hire their own caregivers or purchase assistive items (like chair lifts or touch lamps) that help them live more independently.
Quality of life improved, satisfaction with services increased, unmet needs for care were reduced and access to home care increased under the program.
Each person’s cash allocation is approximately equal to the value of personal care services he or she would have recieved from an agency. The program also offers participants counseling on making the best use of the funds.
Thanks to the success of the program in three pilot states (Florida, Arkansas and New Jersey), it’s been expanded to 11 more states by its joint funders, the Robert Wood Johnson Foundation, and the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services, and the Administration on Aging, also in HHS.
These states received three-year grants of $250,000:
- Alabama
- Iowa
- Kentucky
- Michigan
- Pennsylvania
- Rhode Island
- Vermont
- Washington
- West Virginia
Two states received $350,000 in order to expand the model further: Minnesota and New Mexico.
An evaluation of the initial program showed that participants’ quality of life improved, satisfaction with services increased, unmet needs for care were reduced and access to home care increased — all without compromising the recipients’ health or safety. Although the evaluation on cost isn’t yet complete, initial results from one state show that by the second year, the consumer-directed option cost no more than agency care.
To find out more about Cash & Counseling, go to www.cashandcounseling.org or call the national program office at the Boston College Graduate School of Social Work, (617) 552-2809.
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