Meet Ann Bell Worley through her new family website focused on living with PANS

By DAVID CRUMM
Editor of ReadTheSpirit magazine

Our publishing house team had worked with writer and editor Ann Bell Worley on the production of George A. Mason’s new book, The Word Made Fresh, for months before we became aware of her activism on behalf of families living with PANS.

PANS is Pediatric Acute-onset Neuropsychiatric Syndrome and is distinct from a similar diagnosis of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections). The Stanford Medicine website makes a helpful distinction for lay people. Because research is continuing, many online resources have not been able to keep up to date. Wikipedia, for example, continues to lump PANS together with PANDAS.

That’s why the Vision statement on Ann’s new website, called Gray Colored Glasses, is: “‘to make PANS a household name, leading to decreased suffering and isolation & increased community understanding and support.”

She adds, in another part of her new website: “There are kids in nearly every school and place of worship who are living with it. And yet, PANS often goes undetected, because it is a relatively new diagnosis and not well known, even among doctors. Sadly, delayed treatment can result in years of unnecessary suffering and potentially permanent consequences.”

There’s a larger mission behind the new website, as well, Ann writes: “There is power and purpose in sharing our experience—to raise awareness about PANS and generate compassion and understanding for medically-complex children and their families.”

So far, the most compelling resources on Ann’s website are her blog posts, collecting columns she has written over a number of years.

Plus, she provides a Contact page for folks who want to connect with her and help share her message with others.

As professional colleagues who have come to respect Ann’s work on media projects, we are pleased to recommend her website to others.

Care to learn more?

Ann played a major role in the development and editing of George A. Mason’s new book, The Word Made Fresh. If you care to see her professional expertise and understand more about her spiritual values, you can order a copy of George’s new book from Amazon now.

The Best-Selling Series by Beloved Catholic Teacher Bishop Kenneth Untener Continues for Lent 2023

As a longtime journalist covering religion in America, I reported on the launch of the late Catholic Bishop Ken Untener’s Little Black Book series for Lent of 2020.

At the time, no one had any idea that this simple concept would lead to millions of devotional books sold around the world, but I kept checking in with Ken’s project over the years and soon millions of the little books were circling the globe. To this day, Ken’s friends in the Diocese of Saginaw’s Little Books publishing house continue to roll out annual books, now via Kindle. If you check Amazon, there is not only this new 2023 Little Black Book for Lent on Kindle, but also editions for previous years.

I am thrilled to see this idea for special pocket-sized devotionals continuing to touch lives, so I’m reviewing the 2023 edition right away. Perhaps by adding a review, I might encourage more folks to pick up this year’s edition while Lent is still mostly ahead of us.

Click on the cover to visit the book’s Amazon page.

The team at Little Books continues to select pieces by Ken for each edition. Anyone who knew Ken’s life and work understood that he was all about concise storytelling and preaching. He was a pioneer in working with his priests, many years ago, in workshops on preaching to encourage them to more carefully plan their daily homilies and also to keep them tightly focused. So, the idea of these tiny texts springs from the heart of Ken’s wisdom about how to share the faith with others: Keep your message clearly focused.

In fact, Ken used to point out in his workshops: That’s how Jesus does it in the Gospels. One of the first meditations in this 2023 edition is an example of that: Jesus using the example of a child to explain how he wants his followers approach the world, in this case saying, “Whoever receives one child such as this in my name, receives me.”

Then, throughout Lent, Ken’s daily reflections celebrate Christian wisdom, customs, the saints and scripture.

For example, you’ll meet Blessed Rutilio Grande (and this short piece has been updated to include the fact that Grande was declared “Blessed” in 2022). You’ll meet Peter Benenson, the founder of Amnesty International, Australia’s singing nun Janet Mead, the American-born St. Katharine Drexel and more.

Although Ken died far too young in 2004 from a form of leukemia, his compelling teaching continues in many forms, including this remarkable best-selling series.

Give yourself a gift in this Lenten season and follow along with one of Ken’s little books.

 

Howard Brown’s second book is a chorus of 365 inspiring voices

By DAVID CRUMM
Editor of Read the Spirit magazine

The message of Howard Brown’s memoir, Shining Brightly, comes across loud and clear in his contribution to a new global collection of 365 voices of hope and resiliency: The Art of Connection.

Howard was invited to contribute one of the year-long day-by-day readings for this volume, which debuted on Amazon this month.

In his contribution, Howard starts with advice that’s already well-known to readers of Shining Brightly:

We all get knocked down in work, family, and in life. The question for all of us is, “How do you get back up again?” As a stage IV cancer survivor, I have been knocked down to my core; emotionally, physically, financially, and in relationships. I have learned and now teach that cancer and life are team sports. You cannot and should not go it alone. Accept help from friends, family, colleagues, and even strangers.

To read more, click on the image above to visit the book’s Amazon page and order your own copy.

Or, check out the entire story in Shining Brightly.

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Care to learn more?

This is a perfect moment to become one of Howard’s growing global community of friends by ordering your copy of his book.

Here are other articles we have published, exploring the launch of this book:

Take a look at the book’s Foreword: ‘Shining Brightly’ Foreword by Dr. Robert J. Wicks: ‘Learn anew about the American Dream’

And especially read this story: Two-time cancer survivor Howard Brown writes ‘Shining Brightly’ to encourage others to stay healthy

Free Resource Guides

Download (and free-to-share) resource guides for discussing Shining Brightly:

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Help our families and friends honor National Caregivers Month

Choose one of these books as a gift for the tireless caregiver in your life

(Depending on your digital device, the recommended books will appear at left—or below.)

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MOST AMERICANS either have served as caregivers—or know a caregiver currently serving as an unpaid lifeline for a loved one. That’s why Americans mark November, each year, as National Family Caregivers Month—as a time for all of us collectively to say: Thank You!

In his annual proclamation of this special month, President Biden wrote, in part:

The truth is, at some point in our lives, each of us will likely need to be a family caregiver—but the burden falls especially hard on those who cannot afford support. Women, people of color, and immigrants shoulder a disproportionate share of the obligation, sometimes forced to leave good jobs to instead provide care. Their work is a profound service to their families and to our Nation, but they are still too often unseen, undervalued, and unpaid. 

Care to learn more?

The U.S. Census Bureau offers the latest data on caregiving for writers, journalists, activists and community leaders who are planning to reach out on behalf of caregivers this month.

The Administration for Community Living (ACL) provides more information, plus free-to-share graphics for use in social media. Want to mark the month in your own email messages, social media or newsletters? You’ll find lots to share from ACL.

Choose the gift of reading

Since the founding of our publishing house in 2015, we have been publishing a wide array of books that inspire caregivers. Some books provide practical help; others are fun and uplifting; and all of these books reassure caregivers about the value of their hard work. Please look at the books featured with this column—either at the left or below, depending on the device you are using to read this column.

Click on any of those covers to visit their Amazon pages.

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Aging Today podcaster Mark Turnbull talks with Rabbi Joseph Krakoff of the Jewish Hospice and Chaplaincy Network

A Fascinating Interfaith Dialogue about End of Life Issues

Click on the cover of Rabbi Krakoff’s book to visit its Amazon page.

Podcaster Mark Turnbull is a friend of our publishing house and, in this new hour-long podcast, he talks with our author Rabbi Joseph Krakoff, head of the Jewish Hospice and Chaplaincy Network.

This is a fascinating conversation because both Turnbull and Krakoff began their careers in ministry with congregations. Turnbull is a Protestant minister who moved from serving congregations to his current focus on issues involving the later stages of life. As they talk in this podcast, Krakoff explains that his career has followed a similar path.

Turnbull asks Krakoff what he finds rewarding in this vocational focus.

The rabbi explains that his work allows him to help men and women at a time in life that many people have never paused to consider. “Dying is a life-cycle event—just like birth, bar or bat mitzvah in Judaism or confirmation in Christianity, or a wedding. The life cycle event of dying needs as much attention as the other life cycle events because of the way it affects the individual and family members and friends so significantly.”

However, it’s sometimes challenging to start that kind of conversation and Turnbull asks the rabbi to talk more about the wide range of responses he encounters.

This can be particularly challenging, Krakoff says, with the “half of our community that is unaffiliated, meaning they don’t have a congregation. … When we do reach out, a lot of times we will hear people say, ‘I don’t want a rabbi. I’m not religious and never was.’ But, then, closer to the end, they do want a rabbi, someone to ask about what Judaism says about what happens when we die. … They want to know about verses of the Bible and our teachings around the end and whether there’s something else out there after we die.”

Please, make time to listen to this inspiring hour-long conversation—and please share this with friends.

 

Mindy Corporon on Responding to the Oxford Shootings in a Loving Way

EDITOR’S NOTE: Mindy Corporon is a nationally known advocate for the thousands of families affected by tragedies each year—drawing on hard-earned wisdom she has gathered after a terrorist attack struck her family. Now, Mindy’s life’s work has become a multi-faceted effort to share spiritual solace as well as very practical ideas for coping with trauma and loss. Her podcasts and her community-outreach and training programs already have helped men, women and young people nationwide. So, this week, when a 15-year-old gunman unleashed a shooting rampage inside a Michigan high school, Mindy immediately responded with examples of the many practical ways neighbors can respond. (Wikimedia has more background on the Oxford High School incident and its aftermath.)

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Responding to a horrific tragedy starts with the simplest of daily challenges

By MINDY CORPORON

With deep respect for the lives lost and the lives shattered in the shooting at Oxford High School this week, we pause and ask ourselves: What can we do?

Crying, prayer and sharing your feelings with your family and friends is always a good place to start. From there, there are different actions depending on whether or not you know the victims.

If you know the victims of the tragedy, you can help by gathering together, being present, assisting with the necessities of daily life, such as laundry, grocery shopping and caring for the family pet. Drop off paper products. Organize a long term plan for meals, beyond the initial days following the event. Their grief will leave them needing help with food and day-to-day needs for weeks and perhaps for months down the road.

If you don’t know the victims, but are hurting for humanity, you can send a letter to the victims’ families to the funeral home.

You can send notes to the high school for students and faculty to read when they return.

Make a donation to the high school for the services they may need, to help with the grief and healing.

Plant a tree or have your own candle-lighting for the victims.

It is important to remember the students at Oxford High School when they return to classes in January. Letters, flowers and cards will help the Oxford community as they reassemble and face their new reality.

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Care to Learn More?

Mindy writes about the legacy of her own family’s trauma after a terrorist attack in Healing a Shattered Soul, which is available from Amazon.

A popular speaker, teacher and writer, Mindy has dedicated her life to encouraging kindness, faith and healing in congregations, companies and communities. Among the programs she has co-founded with this vision are the Faith Always Wins Foundation and Workplace Healing, LLC.

The emphasis on healing, which is right there in the first word of her memoir’s title, is the core of this book’s power to inspire readers and spark fresh engagement in our communities.

Experts, caregivers point to potential solutions at inaugural forum

First event in Southeast Michigan from local journalism collaborative

A program at Detroit’s Hannan Center that provides day care for adults with dementia, offering a needed break for their caregivers, was one of the projects discussed by panelists at a public forum held Thursday on issues facing caregivers and possible solutions for them. Courtesy of Detroit Public Television

By Lindsay M. McCoy

Paula Duren, a Detroit-based psychologist, is one of an increasing number of caregivers of elderly adults who felt overwhelmed by the task of caring for aging parents, both of whom suffered from dementia.

“There were moments that felt like you didn’t even know what to do,” Duren said. “It brings about a helplessness.”

Duren was a panelist at a recent virtual forum hosted by the New York & Michigan Solutions Journalism Collaborative, a group of news, community and academic organizations that cover chronic problems with a solutions-focused lens, and Strides for Seniors, an annual month-long event series focused on Detroit’s senior centers.

The event, presented by collaborative members Detroit Public Television and Urban Aging News, featured journalists, caregiving experts, and community members who have served as caregivers for their loved ones.

The number of unpaid family caregivers has been rising in the United States, up from 43.5 million in 2015 to 53 million in 2020, according to a recent study by the AARP Public Policy Institute. The causes are numerous—from the aging of the Baby Boomer generation to a shortage of paid family caregivers. But despite formidable challenges, panelists discussed potential solutions being attempted across the United States.

After her experience, Duren founded Universal Dementia Caregivers. The non-profit organization offers support and education to those affected by dementia-related issues through services such as family mediation, legal guidance and workshops on caretaking skills and self-management.

“One of the things we do is invite attorneys in so people can ask their questions,” Duren said. Family caregivers “never think about the fact that (they) might need a power of attorney or a will might need to be established.”

Paid caregiver, funding shortage

The strain of caregiving isn’t unique to family caregivers; professional caregivers are also struggling.

“It’s a job that many spoke … about feeling very underappreciated,” said Sarah Rahal, a reporter for The Detroit News, during the event.

Paid caregivers’ turn over at a rate of 82 percent, and the workforce is currently in need of 34,000 more professional care workers, she said. This is a situation that is “expected to get much worse. There are thousands in Michigan who are in desperate need,” Rahal said.

One solution is dedicating more money toward paying caregivers—raises for paid caregivers as well as funding for the millions of unpaid caregivers.

The recent Biden administration infrastructure proposal originally included funding for increased caregiver pay, but that provision was left out of the deal struck this summer between the White House and a bipartisan group of senators.

Billions of dollars were proposed to go to expanding access to long-term care services in the home rather than receiving care at institutions, and the second priority would be to make caregiving jobs worth having, said Michael Kilian, editor of the Rochester Democrat and Chronicle.

Professional caregiving jobs “don’t pay well and… are very difficult,” Kilian said.

But Biden’s proposal did not include similar funding for unpaid family caregivers. The AARP has found that unpaid caregivers pay on average more than $7,000 a year out of pocket caring for loved ones.

According to Madeleine O’Neill, a reporter with the USA Today Network, there is currently a proposal in Washington that would provide unpaid family caregivers a tax credit up to $5,000 and allow Medicaid to cover more home-based services.

This proposal, if passed, “would be transformational for family caregivers in a sense that family caregivers might actually be able to access professional care for their loved ones and return to the workforce,” O’Neill said.

Needing a break

In addition to financial stress, caregivers also cope with physical and emotional strain.

For instance, Rahal pointed to the difficulty of the work itself, stating that caregivers are injured at a higher rate than even truck drivers in the United States.

Duren, the Detroit psychologist, says caregivers will neglect self-care when they put their loved ones first.

The Hannan Center, a senior center in Detroit, offers respite care in the community through a program called Daybreak. This respite care service allows caregivers a break at affordable rates, sometimes as low as $5 per hour.

“Sometimes it’s just a few hours, sometimes it could be five days a week,” said Vincent Tilford, the center’s executive director. “It helps to improve that relationship between the care partner and the person that they are caring for.”

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Care to Learn More?

The full public forum can be viewed on DPTV’s website. The interstate collaborative plans to continue engaging the community on solutions for caregivers through events and reporting.

Follow the collaborative’s reporting at nymisojo.com and email story ideas to Project Director Karen Magnuson at [email protected].

Members of the news collaborative in New York include the Democrat and Chronicle, Minority Reporter, La Voz, WXXI and News10NBC in Rochester, and WGRZ, The Buffalo News, the Niagara Gazette and the Lockport Union-Sun & Journal and WBFO in the Buffalo area. Community partners include Rochester Institute of Technology’s MAGIC Center.

Members of the news collaborative in Michigan include Bridge Michigan, Detroit Free Press, Detroit Public Television, Detour Detroit, Hometown Life, Michigan Radio, The Detroit News, Livingston Daily, Macomb Daily, The Oakland Press, Tostada Magazine and Urban Aging News. Four news organizations represented by New Michigan Media are also involved: The Arab American News, Latino Press, Michigan Korean Weekly and The Detroit Jewish News. Community partners include Front Edge Publishing, Michigan State University, Just Ask Talk Show, and Wayne State University.

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And a special thanks to Lindsay McCoy, an MSU journalism graduate student who covered the forum for the collaborative.