Couple Battling ALS Starts Over in Katrina's Wake

by Christina Medvescek

It used to be that Walter Ferrier, 57, a lifelong resident of New Orleans, would never evacuate during hurricanes. But since the onset of ALS, a diagnosis of which he received in March 2004, he finds it hard to breathe when the electricity goes out and he loses his BiPAP and air conditioning. In August, he and his wife, Valetter, decided to leave their neighborhood in extreme eastern New Orleans in advance of Hurricane Katrina.

“We thought we would be gone just two or three days,” said Valetter. “We left with just comfortable clothing, two pair of shoes, four pair of underwear, Walter’s manual chair. We didn’t take any precious photographs, my wedding book, nothing. We left his Hoyer lift, lift chair, hospital bed, power chair — all the things that made life convenient for him.

“I had no idea the water would be over my roof. Not in my wildest dreams. We had no idea the levees would breach. The river and the lake met each other over my house. I have no doubt there are alligators swimming in our house right now.”

A Big Group

The couple made their way to Humble, Texas, outside of Houston, because they have relatives in the area, and because Valetter has breast cancer that has metastasized into bone cancer, and she has been getting treatments at Houston’s M.D. Anderson Cancer Center. The Ferriers traveled with their large extended family of 18 people, ranging in age from newborn to senior citizen.

Realizing early on that they wouldn’t be able to go home for a long time, family members moved quickly to secure three apartments in the same complex. Pooling their resources, they’re managing to get by, but many family members now are unemployed, and those who still have jobs aren’t getting paid regularly. Insurance also is proving balky, unresponsive and slow, although ultimately it should provide some help with living expenses.

Valetter registered with FEMA and applied for food stamps, but was “crushed” to discover she and Walter didn’t qualify for the stamps because they both get Social Security disability checks. They’ve since made contact with a food bank that’s helping out. Also, Dillard’s donated some “very, very nice clothing,” she says, and a church group brought over some household supplies.

MDA and M.D. Anderson have responded to the Ferriers’ immediate medical needs. A tub transfer bench was shipped from the Austin MDA office, but it’s taken a little longer to find a hospital bed and Hoyer lift.

“Our vendor is just overwhelmed,” explained Houston MDA Health Care Service Coordinator Anne Swisher, noting she’s still looking. She arranged for Walter to be seen Sept. 20 without medical records in the MDA/ALS clinic at the Vicki Appel MDA Neuromuscular Clinic at the Methodist Hospital in Houston.

MDA Helping Out

The Houston MDA office went into high gear after Katrina, as the area filled with New Orleans evacuees. After widely publicizing the MDA phone number through social service agencies, hospital physical therapy departments and disability referral sheets, Swisher helped connect a number of ALS and muscular dystrophy patients with clinic appointments and assistive equipment.

Swisher also was indirectly able to provide a communication device for a young man with ALS who had left his behind in New Orleans. “We take our communication devices to a speech pathologist, Laurie Sterling, to have them recycled, and we had just taken her one the day before,” said Swisher. “This young man somehow managed to make his way to Laurie at Methodist Hospital without calling MDA. She called us to see if she could loan him the device, and of course we said yes.”

MDA also received calls from people with other disabling conditions, such as multiple sclerosis and cerebral palsy, and staff were able to provide help in those cases.

“I feel badly for the people who had to relocate, but I’m proud of MDA for stepping forward and proud of our community,” said Swisher, adding she feels “blessed to help.” Many MDA families and volunteers, including MDA summer camp counselors, have contacted the office offering housing, transportation and other assistance.

Swisher hopes to connect evacuees with ALS to the local MDA ALS support group meetings, and she may start a support group for displaced families affected by muscular dystrophy.

A Long Road Ahead

In spite of the uncertainty and frustration of their current situation, the Ferriers are settling into their new quarters.

Although it’s more difficult without assistive equipment, Walter said he’s managing “OK,” thanks to being “totally surrounded by my family.” The extra help with his bathing, dressing and feeding has provided a small break for Valetter, who said she’s feeling “tired, overwhelmed and blessed.”

The couple aren’t eager to go back to New Orleans anytime soon. Even when the water is pumped out of their neighborhood (estimated to be in mid-October), the area is going to be beset with toxic waste, mosquitoes and disease.

“There’s no way we could go back now. And I’m not interested in going back at all,” said Walter slowly, his words slurred but clear. “I’ve already got one disease I’m battling right now. That’s enough.”

Epilogue: After “looking at weather maps, considering our options and calling hotels,” the Ferrier family decided not to leave Humble in the face of Hurricane Rita later in September. Neighbors who tried to evacuate came back due to highway traffic jams. The storm produced only high winds and rain in Humble.

For more on Hurricane Katrina survivors who have an MDA connection, go to www.mda.org/whatsnew and www.mda.org/publications/Quest/extra.

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Augie's Quest

by Alyssa Quintero

Since 1977, Augustine (Augie) L. Nieto II has guided the fitness industry to new heights, notably as the co-founder and former president of Life Fitness Inc. Now, he has one more mountain to climb and conquer — in March, at the Mayo Clinic in Scottsdale, Ariz., the fitness industry innovator received a diagnosis of ALS.

Nieto, 47, immediately resolved to find a way to raise money for ALS research, hoping to help open the door to new treatments and ultimately a cure.

A 1980 graduate in economics from Claremont McKenna College, Nieto has built his career in the fitness industry on the principle of making a positive daily impact on people’s lives.

“What businesses can you ever be associated with where you can really change not only someone’s outlook on life but also how long they live?”

Now, Nieto has the chance to do the same in a different arena.

“My goal is to help increase the survival rate,” Nieto said. “I look forward to helping any way I can as long as I can.”

Augie's Quest

In January Nieto bought the Octane Fitness Company of Andover, Minn., which designs and distributes premium elliptical cross-trainers, and became company chairman.

From left: Lindsay, Nicole, Lynne (wife), Nieto, Austin and Danielle

Two months after the purchase, however, he received his ALS diagnosis. Since then, he has focused much of his attention on raising funds for ALS research. Six months later, Nieto’s campaign, called Augie’s Quest, has taken center stage.

Following his diagnosis, Nieto embarked on a nationwide journey in search of answers. He visited the top research facilities “to learn more about what I’m facing.”

“I wanted to know how I could learn more, and I became an information hound, trying to find out where the top facilities were, and what I found is that they were all MDA facilities,” Nieto said.

After completing a thorough investigation, he realized that MDA “is the largest contributor to ALS research,” and Nieto decided he wanted to build a partnership with MDA.

“I couldn’t have picked a better partner,” Nieto said. “It was very easy once I had all of the information.”

At this time, Nieto is working with members of the MDA staff to coordinate future fund-raising events that will benefit ALS research.

“I’m thrilled to be able to work with Sharon [Hesterlee, MDA director of research development] and her staff in Tucson, Ariz., and to learn about where we should be putting the money.”

The Benefit

When Nieto learned that he was to receive the fitness industry’s top honor, the Lifetime Achievement Award presented by the International Health, Racquet & Sportsclub Association and the National Fitness Trade Show, in September, he had a brainstorm.

Nieto convinced the trade show’s organizers that its annual reception and dinner should be transformed into a benefit that would raise money for Augie’s Quest and MDA’s ALS research.

Ron Hemelgarn, IndyCar team owner and benefit emcee, presents Augie Nieto the fitness industry Lifetime Achievement Award.

“This was never a fund-raiser in the past,” Nieto said. “I got together with Shannon [Shryne] of the MDA office in San Diego, and said, ‘Let’s go make it happen.’ And, in less than three months, we set a record for MDA.”

The benefit raised the largest amount ever by an inaugural event of its kind — over $1 million. The funds have been earmarked for MDA’s ALS research program.

Nieto declared that MDA’s Scientific Advisory Committee is best qualified to determine how the funds should be spent.

“The benefit on Sept. 8 was an amazing highlight in my career,” Nieto said. “I was grateful to the industry but more grateful for how they responded financially.”

Still Running

Nieto started out in the fitness industry almost 30 years ago, largely because he was an overweight young man.

“I struggled with weight as a young adult, and once I found it [fitness] to be my answer, my panacea, I wanted to share that belief and that vision with everybody else,” he explained.

Even though his arms are much weaker six months after his diagnosis, Nieto isn’t willing to let ALS keep him down.

“I ran six miles this morning, and I’m not giving up,” he said. “Exercise is a part of my life, and I intend to be active as long as I can, forever.”

Despite the changes that come with ALS, Nieto has developed Augie’s Quest because he wants to continue to make a difference in people’s lives.

“There’s incredible therapy in being part of helping to find the cure,” Nieto explained. “It gives me purpose in my life to try to provide some leadership in an area where there aren’t enough people that know what’s out there.”

Learning About Living

Nieto and his wife, Lynne, have been married for 10 years, and they reside in Corona Del Mar, Calif. Nieto has four children, Nicole, 22, Danielle, 20, Austin, 19, and Lindsay, 16.

“My first priority is to spend time with my family,” he said. “You have to be careful that you don’t get out of balance. And, I want them [my kids] to look at me as a role model in that this is what Dad does when he’s given a stack of cards. He plays his hand and does the best he knows how to do.”

Nieto’s learned a few life lessons that he carries with him as he continues to live in the face of ALS.

“It doesn’t matter how many medals you win, how many trophies you have, how much money you have made. There is only one thing at the end of the day, and that is love,” Nieto said.

And, although he’s facing the challenge of his life, Nieto still hasn’t lost his sense of humor.

“I’m going deep into my wine cellar right now,” he said. “There aren’t too many bottles that I’m waiting to drink. I figure, don’t put away for tomorrow what you can drink tonight.”

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ALS Research Roundup

by Margaret Wahl

Beijing Report: Fetal Cells Fail to Stop ALS

John Winchester, of Medina, Ohio, is among a small number of Americans with ALS who have gone to China’s capital city to receive transplants of cells that cover nerves involved in the sense of smell (olfactory ensheathing cells) taken from fetuses. These OECs have some stem cell-like properties.

Winchester and his wife, Megan, traveled to Beijing in December, some three years after John’s diagnosis at age 33. At the time, he was using a power wheelchair and nighttime assisted ventilation.

After checking into a sparsely furnished room at West Hill Hospital in Beijing, Winchester underwent blood and breathing tests, an electromyogram (EMG) and an MRI scan.

Then, with the aid of local anesthesia, doctors drilled two holes in his skull, into which they inserted the fetal cells. (Winchester felt only vibration.)

After a few days of rest, he began speech and physical therapy, acupuncture, massage and electrical stimulation. The total cost for the Winchesters, excluding only airfare, was $19,000.

At the end of the first week, Winchester says, he noted improvements in hand and arm function and in his speech. The second week brought even more gains, and there were short periods when his speech was very clear.

But back home, Winchester experienced a steady decline over the next eight weeks, with an unexplained improvement in week eight. By August, he had gotten worse again.

Via e-mail in September, Winchester said his speech had further deteriorated, that he could no longer feed himself and needed help to transfer.

“Two that I know of from my [transplant] group have since passed away, and others I e-mail with are declining,” he wrote. But he added, “Nobody regrets trying it.”

Although these experiences demonstrate that cell transplantation for central nervous system disease has a long way to go, much research in this area continues.

Low SMN Levels Increase ALS Risk and Severity

The more SMN (survival of motor neuron) protein one has, apparently, the better it is for motor neurons, the nerve cells in the brain and spinal cord that control movement and degenerate in ALS.

A Dutch study published online Aug. 10 in Neurology shows that relatively low levels of SMN, such as those found in carriers of spinal muscular atrophy, a disease affecting the motor neurons in the spinal cord, increase the risk of developing ALS and shorten survival time in those who already have the disease.

Study investigator Jan Veldink at University Medical Center Utrecht says that, even with low SMN levels, the risk of developing ALS remains small. With low SMN, it increases from about 1.5 per 100,000 to about six per 100,000.

He said the main implication of the findings is not that people with low SMN should worry about developing ALS, but that understanding SMN’s functions may shed new light on the mechanisms underlying ALS development and progression.

Life Satisfaction Probed

Graduate student Roy Chen at Michigan State University in East Lansing is investigating the relationship between self-acceptance of a disability and life satisfaction. Chen, who has muscular dystrophy, is seeking people who are at least 18 years old and have a progressive neuromuscular disorder.

His online questionnaire can be found at www.surveymonkey.com/s.asp?u=344351246794. For information or a hard copy of the survey, contact Chen at (517) 355-8091 or chenroy@msu.edu.

MDA Seeks to Move Gene Therapy to Clinical Trials

In September, MDA issued a request for proposals related to gene therapy for ALS. The transfer of genes for vascular endothelial growth factor (VEGF) and insulin-like growth factor 1 (IGF1), as well as strategies to block genetic information through a technique known as RNA interference, have shown promise in laboratory models of ALS, and MDA now wishes to move these strategies into clinical trials as quickly as possible.

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More Influence Than You Know...

by Christopher Rice

Living with ALS, of course, has many downsides. At the same time, dealing with people, in day-to-day activities, has taught me a lot about the upsides. One thing I’ve learned is that the way I carry myself and the way I deal with life really have an effect on others.

Chris and Reda Rice of Houston are co-chairs of MDA's ALS Division

This became apparent in my correspondence with Tara, a friend and co-worker at Lincoln Property. Tara was an administrative assistant to a vice president in Austin, Texas, part of the information technology service area for which I was responsible. She e-mailed me to inform me she was moving on to another job. She made some comments that were quite surprising to me, and very nice. With her permission, here is the edited e-mail:

Chris —
I have met some wonderful people over the years that I am really going to miss — and you are certainly at the top of that list!

I’ve learned a lot of things because of you — about myself, about ALS, human nature in general... You really are an amazing human bean (as my little one says).

Because I know you, I will try my best to always be thankful for my health, and if you can get up and live life to the fullest every day, then I can surely get off my butt and play with my kids when I really want to sleep in! I’ve also had the opportunity to share these lessons with my girls at a very young age — my oldest daughter researched ALS and gave a presentation to her class! And since we were on TV at the Telethon here — now my kids think I am a star!

Also because I know you, I will be more patient with people who have challenges — because now I know that behind the slurred speech lies a brilliant mind and a warm heart — a valuable co-worker and a loving husband and father!!

… I wanted you to know that you have educated and inspired me. Someday medical science will prevail — and then there will be Chris Rice’s Cure for Lou Gehrig’s Disease! And maybe they will name a stadium after you!

… always know that you and your beautiful family are in my thoughts and prayers!

Tara’s words surprised me. All I thought I was doing was living my life, the way I see so many others with ALS do. I had no idea what kind of effect someone with a disability, namely, ALS, can have. I recently retired from my job, and heard similar things from others I worked with over the past seven years.

All of us who have ALS can and do use this attitude in order to make this disease more visible. One person may be a whisper, but all together we speak in a loud voice.

Reminder Every fall, MDA offers those it serves free flu shots, because influenza can be extremely dangerous for people affected by neuromuscular diseases. For more information, call your local MDA office.

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Snapshots of Life

by Alyssa Quintero

From celebrities to prominent political figures to professional athletes to the average man or woman on the street, John Joseph Davis has seen it all.

For over 40 years, Davis has photographed countless American and international icons, including Sammy Davis Jr., Gregory Peck, Dionne Warwick, Ray Charles, Ted Kennedy, Nelson Mandela, Venus and Serena Williams, and Michael Jordan, just to name a few.

Serena and Venus Williams with their mother Oracene. Photo by John Davis

Davis’ résumé — and his memory — is long. After taking thousands of photographs over the years, the self-proclaimed natural-born photographer really thought he had seen it all. Well, almost.

In August 2004, Davis received a diagnosis of ALS.

“I knew right away it was devastating and terminal,” Davis said. “It tore me apart for a while, but then I knew that I had to pick up the pieces. It was very difficult to tell my wife.”

Davis, 65, who attends the MDA Clinic at UCLA, has lost the use of his arms and legs, uses a power wheelchair for mobility, and is experiencing swallowing difficulties.
With his diagnosis, however, Davis realized that it’s not the end but rather a new beginning, of sorts.

“It’s a new beginning spiritually,” Davis explained. “For all those years, I was living from the outside in, and now I have to reverse that and live from the inside out.”

Gregory Peck. Photo by John Davis

During this time of transition and change, Davis and his wife, Cheryl, as well as other family members, have relied on prayer to sustain one another and move ahead.

“Change is not easy,” Davis explained. “I would hug everybody I came in contact with, or shake his or her hand. I miss hugging my wife, but you haven’t heard me say that I miss too much more.”

Body of Work

Davis, a revered international photographer based in Los Angeles since the early 1960s, has several long-standing celebrity clients, including recording artist Dionne Warwick and actress Marla Gibbs. For several years, he has shot photography for the Essence, Soul Train and NAACP Image Awards. Several of his photographs also have been published in Ebony magazine and in official publications for the state of California.

“I’ve photographed a lot of legends, but I never advertised,” Davis said.

Davis’ photographs have been displayed at various museums, universities and galleries, including, most recently, the National African American Museum and Cultural Center in Wilberforce, Ohio; the Black Art Gallery in Los Angeles; the Pasadena Conference Center; Charles Drew University in Watts, Calif.; and the Los Angeles County Office of Education. Davis’ photographs of various jazz legends can be viewed at the Los Angeles Jazz Society.

Davis, who worked as the official photographer for the city of Inglewood, Calif., also has received many accolades, including a proclamation honoring him from the city of Inglewood in 2001 and a proclamation of John Joseph Davis Day, on Aug. 12, 2001, in Dayton, Ohio, where he was born, and where he worked with at-risk youth before moving to Los Angeles in the early 1960s.

Sammy Davis Jr. was one of Davis’ most prominent celebrity clients. He photographed the late entertainer during the last two years of his life. The star’s wife, Altovise Davis, is working on a book about her husband’s life. At this time, Davis is in talks to contribute his photos for the book.

“I’m really looking forward to working on that project,” he said.

A Night Under the Stars

Davis received the 2005 Golden Wings Award at MDA’s 19th annual A Night Under the Stars spring gala in Los Angeles on April 16. Established in 2003, the Golden Wings Award acknowledges an individual whose remarkable talents and vision make a difference in the lives of all they touch.

“I was very excited,” Davis said. “I decided that there was no way that I could receive an award as great as this without giving it away. I said this goes to the people who picked me up the day when I fell, and it goes to the wife that has to make sure I’m OK.”

Davis has always reveled in his ability to capture life through his photography.

“Most photographers photograph with their eyes, but I photograph from the heart,” Davis explained.

Life With ALS

While Davis admits that his emotions, especially his self-esteem, have been on a roller-coaster ride since his diagnosis, he also said that he has learned much about himself and humankind in a rather short time.

“It’s been an amazing journey, and it’s given me a lot of time to look deep inside myself,” he added.

For Davis, ALS has helped put life in perspective. While he understands that ALS brings certain physical losses, Davis prefers to enjoy the life he has left to live.

John Joseph Davis and his wife, Cheryl

“I can outweigh the losses by looking at what I have left,” he said. “I have a beautiful family that loves me dearly and friends galore. As I look at what I have left, it’s truly amazing. I’m not the old John Davis, but there is something new inside of me.”

Davis, who with his wife shares six children, is hopeful that some of his best days are on the horizon.

“Most people have already written me off, but I will be back, and there’s still a real hope that I’ll get to hear that shutter go off again,” he said.

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An Endless Fight for Essential Benefits

by Erin Brady Worsham

When I made the choice to live on a ventilator in 1997, I had no idea how many times I would have to fight for the private duty nursing (PDN) that makes it feasible for me to safely stay at home with my husband and young son.

Once I became vent-dependent, my doctor prescribed 12 hours a day of nursing care. But TennCare, Tennessee’s Medicaid program, repeatedly refused to provide my PDN, on the grounds that it was not a covered benefit.

We sought help from the Tennessee Justice Center. Our lawyer argued that Tennessee had not followed the Grier Consent Decree, which lays out guidelines the state must follow for denials and appeals. We hadn’t been properly notified of the initial denial nor told how to appeal. In addition, by categorically stating that PDN was not a covered benefit, TennCare showed it had neither considered my individual case nor based its decision on anything in my medical record. In May 1998, the state reversed the denials and determined that PDN was medically necessary for me.

Victory! Yet PDN continued to be a volatile issue. Later in 1998, the state proposed limiting home health visits to a total of 125 a year. The question of just what constituted a “visit” was troubling for someone receiving PDN in 12-hour shifts. If this proposal carried, many people would be forced into nursing homes.

I wrote down my thoughts on my Liberator communication device and testified, with others, before a legislative committee in 2000. Thankfully, the proposed changes did not go into effect. I could breathe easy for a while.

But not for long. Near the end of 2002, our PDN was threatened again. The state seemed determined to warehouse its most vulnerable citizens in nursing homes.

Desperate times called for desperate measures. My husband, son and I attended the Christmas Open House at the Governor’s Mansion, hoping to speak with Gov. Don Sundquist. He wasn’t there, but we gave the First Lady’s secretary a picture I’d made, along with a letter I wrote about the issue. But Sundquist’s term was ending. He hadn’t been a friend to the disability community while in office and did nothing to help us as he left.

Enter Gov. Phil Bredesen — a man who made his fortune in health care and who ran on the promise that he alone could reform TennCare. We didn’t know his idea of reform meant cutting 323,000 people from the rolls and reducing the benefits for another 396,000. One of those benefits was PDN.

This was the most serious threat yet, because Bredesen had obtained federal approval to proceed with the cuts. We received a letter saying we would lose our PDN on Aug. 1, 2005.

Once again, we didn’t sit back and wait for the axe to fall. We joined with hundreds of other protesters to put pressure on the governor. I spoke (via Liberator) at a prayer vigil, wrote letters to the editor and state and federal legislators, and attended vigils on the steps of the Capitol.

We’ve now been told that PDN will not be cut for ventilator-dependent enrollees, and the whole issue of PDN for others will be shelved until early 2006.

Another victory! For now. If — when — the issue arises again, we will be back on the front lines fighting, because the livelihood of our family depends on it.

ALS may have weakened my body, but it hasn’t weakened my resolve to survive. I will fight for as long as it takes!

Editor’s Note: Tennessee is one of several states that have curtailed or restructured Medicaid benefits due to rising costs. Many others are considering cutbacks. A proposed $10 billion reduction in federal Medicaid funds, scheduled for a vote in Congress this fall, has been put on hold due to the unknown effects of Hurricane Katrina on the Medicaid program.

Worsham, a freelance computer artist who lives in Nashville, Tenn., received her ALS diagnosis in 1994.

 

“Caring Every Day” Believe. Protect. Reach Out. National Family Caregivers Month November 2005 For more information and resources, see www.thefamilycaregiver.org

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