Multiple System Atrophy Awareness Month

From Ed Wall:


Hang on, because March is something you never heard of. It is Multiple System Atrophy Awareness Month. That may sound like a computer disease, but it is all too human.

Ataxia is a hidden tax on human life.

Atrophy is a trophy to crashed human drives, and scientists are still looking for ways to reboot.

Multiple System Atrophy (MSA) is also known as olivopontocerebellar atrophy (OPCA), an incurable neurological ailment, a form of Parkinsonism. I was diagnosed with OPCA nearly a decade ago. It is called a progressive disease. It keeps going, nibbling at a person’s ability to walk and talk, among other things.

Here’s the media announcement prepared through the volunteer leadership of Pam Bower of Halifax, Nova Scotia, and other members of a online MSA group.

March is Multiple System Atrophy Awareness Month

There are no Hollywood celebrities linked to MSA (Multiple System Atrophy)—just more than 2,300 fans known on Facebook as “Miracles for MSA,” whose goal is to draw attention to this rare, currently incurable disease. With that in mind, this group has designated March as Multiple System Atrophy Awareness Month, in order to increase public awareness and encourage research activities worldwide.

Multiple System Atrophy is a neurodegenerative disorder that affects many of the autonomic body systems that people take for granted. The symptoms can occur in any combination, from loss of balance and coordination, fainting and dizziness due to severely low blood pressure, bladder and bowel issues, speech and swallowing difficulties, sleep disturbances, breathing problems, and rigidity and tremors similar to Parkinson’s disease or ALS.

“We all worked hard in our jobs and now we have to work hard to keep ahead of this disease that destroys,” said MSA patient Gene Rechsteiner, of Bakersfield, California. “My hopes are to bring awareness and educate people on how bad MSA is and finding funds for research to find a cure. The medical society needs to realize that for each MSA patient, there are at least a dozen doctors in different fields that will be treating that patient: Primary, neurology, urology, speech, PT, OT, pulmonology, fitness trainer, caregivers, just to name a few. MSA sucks. You lose your independence along with your health. There are only a couple of hours in the day that I am able to function safely. The rest of the day I have to nap, watch my blood pressure. MSA took my career. We cannot stay safely in our home. And now it is eating into our retirement. My wife no longer works in order to care for me 24/7. But we cannot give up hope.”

Previously known by such names as Shy-Drager Syndrome, sporadic olivopontocerebellar atrophy and striatonigral degeneration, MSA is not considered to be hereditary. It generally affects middle-aged men and women, advancing rapidly, with progressive loss of motor skills, eventual confinement to bed, and death. It is very rare for someone to live 15 years with MSA. There is no remission from the disease and currently no cure. The current lack of awareness of MSA leads to misdiagnosis and mistreatment, as well as misdirected research funding that could be better applied to the MSA effort.

Approximately 50,000 Americans are now reported to have MSA (possibly more). A recent epidemiological survey, reported on the European MSA Study group website, has found MSA to have a prevalence rate of 4.4 people per 100,000.

Those are the clinical facts of MSA. But they don’t begin to address the havoc the disease wreaks not only on patients but also on family members, caregivers and friends, who watch their once vibrant loved one gradually lose all those abilities once taken for granted. It is the goal of all those who have been affected in some way by this disease to draw attention to it, not only during March but also throughout the year.

“Novel research to diagnose this debilitating illness sooner and to separate it from Parkinson’s and other disease is critical for creating a better future for MSA patients,” said Dr. Anna Langerveld, who owns Genemarkers of Kalamazoo, MI. “An important first step was taken in 2009 with a pilot study to define a genetic signature of MSA in patient blood samples. The initial work was a collaboration between Genemarkers, Dr. Charles Ide of Western Michigan University and Dr. David Robertson of Vanderbilt University Medical School. Efforts have begun to design and fund a new study to extend and improve these findings. Success will require continued scientific and financial participation from all interested groups. Our passion and the data generated in the ongoing work will expand awareness of MSA, draw more scientists and physicians into our efforts, and begin to bring hope to MSA patients and caregivers.”
For more information on Multiple System Atrophy, including links to MSA organizations and research groups worldwide please visit http://www.msaawareness.org/.

To join the “Miracles for MSA” Facebook page, visit http://www.facebook.com/pages/Miracles-for-MSA/138909258573.

Should priests be both dad and father?

My grandma used to tell me about the time General Grant spoke to her Uncle Ben on the battlefield. “Stand back, Benjamin, and let your gun cool.” She laughed when she told that story. She remembered stories about the family traveling by covered wagon from New England to a new home out west, in Le Roy, N.Y.

As a little kid I liked hearing her accounts of friendly Indians, of making soap, and of the casual sale of powerful drugs in the unregulated pharmacies of that time.

Attitudes change. History wins some and loses some. Those drugs are regulated now, but they are selling more briskly in alleys and neighborhoods than ever before. When I started high school at the end of the 1930s there were virtually no dealers. I was editor of the school paper. I never saw a police officer at the school. I never heard of bikes being stolen or anyone assaulted. It was a simpler time. World War II had not happened yet.

I knew that God liked me when I landed a job as a copy boy on the morning paper. When the war began, and the draft swept young reporters into the army, I was promoted to full-time reporter by my 18th birthday. My favorite beat was called night police, but I covered education, a college dropout unconscious of the irony, along with something called general assignments. I was even assigned to the copy desk, where I quickly learned to edit stories, write headlines, lay out pages and play blackjack.

Old-timers welcomed me into the late-night gambling in the news room. When I was 17 I was included in parties at the homes of reporters. After my first party, the hostess complained that I didn’t drink. She didn’t like the idea that a kid would remember everything the next day.

When I began the job I was a naïve product of a Victorian home, a calm school and lots of religion. I’d never smoked or had a drink. That’s who I was when a shapely woman reporter invited me to her home after we finished work, and it was there that she showed me the painting of herself, dressed for the shower.

A male police reporter who was showing me the ropes showed me the first porn I had ever seen. He was the first of the men on staff who wanted to demonstrate some of the facts of life to a teenager.

He explained that the paper’s policy was to publish nothing about the arrest of priests accused of committing “crimes against nature.” Anyone else could be named.

It couldn’t happen in 2011. Offering a teenager drinks, making sexual overtures, teaching him to play blackjack for money, would get newspaper staffers fired today. And no daily still protects priests. Not so almost 70 years ago.

Attitudes began to change in a hurry for Catholics closer to 50 years ago, when the enthusiasm of Vatican Council II opened church windows to modern breezes. I became editor of The Catholic Review in Baltimore in 1965. It was an exciting period. Bishop Joseph Bernardin—later the cardinal archbishop of Chicago—was general secretary of the conference of bishops in Washington, D.C. He asked me to resign as managing editor of The Honolulu Advertiser to become director, and the first editor-in-chief, of the National Catholic News Service.

My assignment was to reverse financial losses, along with a loss of clients, and simultaneously to convert the daily mimeograph-and-mail operation into an authentic wire service. In the course of that I became president of the International Federation of Catholic News Agencies, which gave me an opportunity to work with Catholic journalists from many parts of the world.

Most of my friends are clergy. It’s been that way for 50 years. Sally, my late wife, knew precisely how Cardinal Lawrence Shehan liked his leg of lamb and how Columban Father John Loftus liked his lamb stew. She cooked for Bernardin and Avery Dulles, for Donald Wuerl long before he became the cardinal archbishop of Washington, for Jesuit Father Thurston Davis and often for scripture scholar Raymond Brown, S.S. There were pastors, seminarians, missionaries, educators and of course journalists at our table, with lots of conversation.

One priest was so attracted to our son during dinner that Sally and I were stunned. The good news is that our son had no idea what the friendly dinner guest had in mind. The bad news is that we didn’t speak up. We didn’t think we could jeopardize a man’s vocation when we had only our parental hunches, and no evidence. It could be frustrating, even risky, to speak up in the 1970s. The unwritten policy was to avoid embarrassment. And nobody wanted to turn in an acquaintance. Some called it tattling.

Most of the sexually active clergy Sally and I knew — whether cardinals or newly-ordained, whether in an American parish or the apparatus of the Vatican, whether gay or straight — were on good behavior. They might have been more comfortable spiritually if celibacy had been optional.

But celibacy siphons off a priest’s sense of family responsibility and all of the priest’s energies can be claimed by the church. And one other thing: The unmarried priest doesn’t have to be paid enough to cover a family’s groceries, clothes, vacations, orthodontists, health insurance and Sunday envelope offerings.

The imposition of celibacy requires men to shun God’s singularly beautiful gift, and deprives the Catholic world of children born with a valuable inheritance.

Celibacy doesn’t work, and evidence of its failures are found wherever priests become convicts, wherever church treasure becomes payouts to victims and their lawyers.

Priests are extraordinary men, offering themselves fully to God and humankind. Humanity is not well served by diminished respect for priesthood.

Whether standing back to let your Civil War musket cool off, or evading workplace predators when you’re a kid, or praying for the human rights of Catholic priests to be both dad and father, everyone has a choice, even if the choice is not to choose.