Autoimmune diseases: Live well, despite illness

Denise and Barbara Johnson

Photo by Karl Rabe.

When Denise Johnson was 30, she received news that changed the path of her life forever.

She had multiple sclerosis.

Johnson, now 33, thinks back on that time and says even though the diagnosis was tough to accept, there was also comfort in it.

“It was such a long process that I was glad to finally know what it was,” said Johnson, of Poughkeepsie.

During the six months Johnson waited to find out why things slipped through her numb hands, why her limbs at times felt paralyzed and why her legs gave way on her, she did her own research.

Finally, Johnson came to know that what had invaded her immune system was a chronic degenerative disease of the central nervous system that affects the brain, optic nerves and spinal cord.

MS is one of the 85 known autoimmune diseases, which result when the body does not recognize its own cells and attacks its immune system. Such diseases have increased dramatically over the last two decades, especially among women, leaving people grappling with a range of symptoms -from pain and fatigue to paralysis.

The National Institutes of Health reports there are 23.5 million people with autoimmune diseases, including lupus, rheumatoid arthritis, type 1 diabetes, scleroderma, ulcerative colitis and Crohn’s disease.

According to the U.S. Centers for Disease Control and Prevention, autoimmune diseases make up the third-largest category of disease behind cancer and heart disease.

More awareness

Dr. Maryanne Wysell, with Orthopedic Associates of Dutchess County, specializes in the treatment of lupus and rheumatoid arthritis, a chronic disease in which the immune system attacks the joints and causes inflammation. She surmises awareness is likely a factor behind the surge in diagnoses.

“It seems there is an increase, and I think it’s because internists and other doctors are looking for these diseases and people are getting diagnosed earlier and getting treated earlier,” Wysell said.

The reason for the spike in autoimmune diseases is largely a mystery, but varied medical research efforts have pointed to environmental, genetics and dormant infections as factors.

According to a March 2005 report by the National Institutes of Health Autoimmune Diseases Coordinating Committee, about one-third of the risk of developing an autoimmune disease can be attributed to heritable factors while the rest is thought to be based on non-inherited factors.

Lupus, a chronic disease in which a person’s organs or tissues become inflamed, affects 500,000 to 1.5 million Americans, according to the the Lupus Foundation of America – making it one of the most common autoimmune illnesses.

Patty Guidice, president of Hudson Valley Lupus Foundation, agrees awareness is a factor in the increase of lupus cases.

“More doctors are now aware, are looking for symptoms, testing and are able to diagnose it,” Guidice said.

Early diagnosis and treatment are crucial factors in slowing the development of diseases, Wysell said.

“The earlier, the better for rheumatoid arthritis and especially for lupus because if we catch it early and start aggressive treatment, it can prevent damage to organs,” Wysell said.

Though an early diagnosis can greatly facilitate a patient’s treatment from a physical standpoint, aggressive intervention may not prepare an individual for the emotional strain a diagnosis can levy on a person’s life.

Don Plunkett’s early diagnosis surely did not brace him for the chain of events that ensued. When he retired in 1984, there were no balloons, sheet cake, good luck speeches or gold watch to celebrate his 19 years as a New York state trooper.

Retirement was unwanted and much earlier than he had anticipated. It came during a trying time – right after his 19-year marriage broke up and shortly after he found out the cause of his double vision and staggered walk was multiple sclerosis.

“It’s certainly not the way I envisioned my life,” the New Windsor resident said.

The MS diagnosis created a sense of disquiet and fear in Plunkett’s life, but he says he turned the tables on the disease and changed his life – for the better.

“I went back to school and got my master’s degree and I started lobbying in Albany and D.C., for MS research funding. I turned everything to positive,” Plunkett said.

Plunkett, 65, is still living by that credo today. He competes annually in the National Veterans Wheelchair Games, winning several gold medals. He also runs an MS support group.

“I know that a lot of people have MS in this area, but they choose not to go to support groups,” Plunkett said. “I recommend the groups because you find out that you are not alone, and it’s an opportunity to share.”

As Barbara Johnson watched the health of her daughter, Denise, weaken and waited for answers, she thought of how her body had waged a war against itself three decades ago.

Bound by pain and love

It took months to find out why the skin on her hands became blackened and seemed as hard as a brick. Then a biopsy gave a name to the enemy – scleroderma.

It’s a chronic connective tissue and autoimmune disease that affects an estimated 300,000 people nationwide. Hardening of the skin is one of the most recognizable features.

“I was diagnosed with scleroderma 31 years ago. It took a very long time to find out what was going on. Denise was about 2 years old then,” Barbara Johnson said.

Though there were not a plethora of options for treatment, Johnson, now 64, was determined to survive. The City of Poughkeepsie resident endured the nosebleeds, fatigue and for a while, took high doses of prednisone, a corticosteroid that reduces inflammation but can cause side effects such as weight gain, mood swings, weak muscles and increased hair growth.

“When I found out about the harmful effects of prednisone, I got off of it because I knew I had to be around for Denise,” Barbara Johnson said.

As determined as she was, the scleroderma was equally as relentless. Johnson’s kidneys failed and she withstood dialysis exchange, a grueling process in which the abdominal cavity is drained several times per day. Despite those daunting circumstances, Johnson remained strong.

“Sure I was depressed, but I eventually found a peace. I never felt that I was going to die. Because Denise was my youngest, I knew I had to live – I lived for Denise,” she said.

Though concrete causes for autoimmune diseases continue to confound researchers, there have been significant advances in the treatment of some of the illnesses, such as lupus and arthritis.

Wysell said new medications have improved the quality of life for some patients.

“In the last 10 years, we’ve seen great progress in treatment with new biological agents and injectable medications,” she said.

Those advances have enabled Denise Johnson, who was once wheelchair-bound from MS, to walk on her own again.

Since starting a new medication, thought to be one of the most effective drugs available for MS patients, she has regained 80 percent of her mobility.

Also, watching her mother live with a chronic illness has been a source of encouragement and strength.

Barbara Johnson manages the scleroderma with medication, rest and avoiding stressful situations. The disease is believed to be the cause of the other ailments she has developed – diabetes, gout, high blood pressure and a weakened heart. Still, she is grateful.

“Last year, I was hospitalized three times for severe joint pain and once for congestive heart failure, but this year has been a good year,” Barbara Johnson said.

Denise Johnson is equally optimistic.

“For a while, I was angry and depressed and I wanted to be left alone, but fortunately I had so much support from my family and friends, that it helped me. You can live again. You don’t have to let the disease kill you,” she said.

 

The NFL’s PR Fumble(s)

Parker Anderson (Creative Commons)

Parker Anderson (Creative Commons)

Without question the NFL is the most continuously embattled sports franchise in America. From cheating scandals to murder trials to domestic violence and child abuse, the NFL seems to always have a crisis in its lap to manage. Beyond the weight of the multiple scandals is the NFL’s approach to crisis management — it is an ongoing study of contradictions.

It has been, and continues to be, painful to watch the Ray and Janay Rice saga unravel. Each layer adds a dimension to the public discourse that, seemingly, widens the chasm between the sides of the debate. You’d think there would only be one side the one denouncing the brutal violent attack on a women, but sadly there are audacious voices who’ve questioned what prompted Ray to slug his then-fiancé, as if it there is ever justification for domestic violence.

The video is what it is and show what it shows. We know there were two versions, the abbreviated version (disturbing enough) and the full version that shows the episode from beginning to end (the one that left me numb). When the NFL actually viewed the full footage is dubious, and while the League scurries to make amends, it’s their response to the Rice drama that should give pause.

While the spotlight is glaring on the NFL, Baltimore Ravens and Ray Rice, this is obviously not the NFL’s first crisis spurred by domestic violence.

Carolina Panthers defensive end Greg Hardy was convicted of misdemeanor domestic violence charges last July. According to public records, Hardy allegedly choked his then-girlfriend, dragged her by her hair and threw her on a sofa that was covered with several loaded assault rifles. Despite Hardy’s conviction, which he is appealing, he was never placed on indefinite suspension as Rice was. In fact, he played in the team’s 2014 season opener.

Carolina Panthers defensive end Greg Hardy

What’s the difference, NFL? Even though Hardy is appealing his conviction, he was convicted, and he received not even a slap on the wrist. Yet Rice, initially received a two-game suspension—the equivalent of a time-out—on the strength of the partial video footage, and now that the full footage has been exposed he’s out indefinitely. What gives? Is domestic violence only a concern when it’s captured on video, or only when the media gets hold of it?

The NFL has made several classic PR missteps in the Rice and Hardy situations: sending mixed messages, lack of transparency, not admitting its mistakes, and feigning concern only after being exposed.

Vilifying Rice and Hardy are not the right course of action, either. Plainly, both men need interventions and guidance, and deserve an opportunity to rehabilitate their behavior.

No one should be judged by their personal failings for the rest of her/his life. That’s not the issue. The broader issue is that the NFL should take a stance, an authentic stance unmotivated by public outcry, against domestic violence, implement swift action for all domestic violence offenses and sideline players until allegations are resolved in the legal system. Jumping from extremes of toddler time-outs in the form of two-game suspensions to indefinite suspensions to no suspensions at all are the wrong moves. Pick an approach—the right approach— and stick with it!

Commissioner Roger Goddell and the NFL have repeatedly fumbled opportunities to use good, strategic public relations to address the nation’s domestic violence epidemic in the raw: every day in America three women die due to domestic violence, and 25 percent of women say they have been physically abused.

This is what we need to talk about. The NFL has a chance to lead here, and not for gain of sponsor or union favor, but for the good of culture. Come on, young girls and boys are watching.

The good that has come out of these crises is that the world is talking about domestic violence. As we approach Domestic Violence Awareness Month, hopefully it will be an additive and substantive discussion.

The NFL can and should take the opportunity to correct itself by sending a stronger message against domestic violence and joining the conversation, but only if it gets its story straight.

Domestic violence is never okay, the victim’s gender does not matter. Domestic Violence Awareness Month is each October. Visit the National Coalition Against Domestic Violence for resources.

FAIL: Epic Missteps in the City of #Ferguson’s P.R. Strategy

Kimberly N. Alleyne
http://www.kimberlynalleyne.com

#FERGUSON

The civil eruption in #Ferguson (Missouri) has quelled since the Aug. 9, 2014,  shooting of Michael Brown by a police officer though the conflict that’s tearing an already divided community rages on, if silently.

Photo by Blue Cheddar

Photo by Blue Cheddar/Flickr Creative Commons

Varying accounts of what actually precipitated the fatal shooting of the unarmed recent high school graduate still mottle accounts offered in print, broadcast and cyber media: Brown attacked Darren Wilson (the officer who shot Brown); Brown was fleeing; Brown had his hands up begging Wilson not to shoot him; Brown didn’t have his hands up…the truth will eventually manifest during the trial.

Despite the calm that is now reclining on the St. Louis County town, a emotional unrest persists among the residents and there is a notable chasm-like void in the City of Ferguson’s public relations approach — to date, it’s been near indiscernible. Here are reasons why the strategy, whatever it is, has been ineffective.

1. Late to the game — By the time the City of Ferguson retained an agency of record (Common Ground PR), civil unrest on both sides had exploded; the shrapnel bred additional crises, such as Michael Brown’s autopsy report, that compounded the situation. The City failed to get in front of those crises–or to respond quickly enough.

2. Lack of community engagement — There are deep divides in the public opinion, primarily along racial/ethnic and socioeconomic lines. A smart strategy would be to focus on engaging the community via town halls and listening tours. You cannot communicate with an audience if you don’t know what they’ll respond to. Lack of engagement–and understanding–blows targeted messaging out of the water.

3.  Insertion of personal opinion – The City of Ferguson announced that Common Ground PR would assist with crisis management by “fielding media inquiries,” and soon after, the racial/ethnicity composition of the firm’s staff was questioned (Not unreasonable since they’re handling an intensely racially-charged situation). Denise Bentele responded, umm sort of, to the criticism in a statement in which she shared her dismay about negative online comments. What?! … Why? Regardless of what the public thinks, Bentele should have never offered personal commentary. And coming on the defensive about the racial make-up of her staff actually heightened suspicion about the firm’s capabilities. The crisis is not about her, and her opinion adds no substance to the public dialogue.

Denise Bentele, CEO of Common Ground PR,

Denise Bentele, CEO of Common Ground PR

4. Not responding on social media – So it looks like Common Ground is not very social. Despite the plethora opportunities to engage media and community members online and on social, the PR agency has also been criticized for not engaging on social, Twitter in particular. Not a tweet out of them so far.

5. No clear spokesperson (s) — Who’s running the show? A spokesperson has yet to emerge. There are too many people talking in this situation. The airwaves are far too crowded with opinionated voices soapboxing boxing about the tragic incident, and not one of those voices includes a City of Ferguson spokesperson. What gives? An essential, and basic, PR strategy is to establish a spokesperson and to equip she or he with a substantive message. That’s not happening in Ferguson. Fielding media inquiries is a back-burner priority in relation to this.

6.  Missed storytelling opportunities –In the face of the widely circulated images of an incensed community standing against police/military, rallies for Michael Brown, and rallies for the Darren Wilson, the officer who shot Brown, there have also been displays of unity that transcend zip code, income, race and ethnicity. The City of Ferguson and Common Ground PR should seize those storytelling opportunities to flip the frame and show another view of the picture.

Also, a PR agency should be an extension of and a complement to a brand, more like a silent partner, not a replacement of its voice.

Common Ground PR should revisit its approach — the nation is watching.

 

Odd Tips to Prioritize Your Day via Fast Company

Kimberly N. Alleyne
http://www.kimberlynalleyne.com

Who doesn’t love a Fast Company article? Today’s “Hit the Ground Running” newsletter offers a great article with tips for setting priorities. For an example, have you ever considered thinking about death to help you set priorities? The article shares a neat prioritization tip from Warren Buffet, too.

 

If today were the last day of my life, would I want to do what I am about to do today? — Steve Jobs

Changed Priorities sign by Addison Berry

Changed Priorities sign by Addison Berry

Check it out. The tip I’ll add is to “imagine your day.” I am re-reading “Think and Grow Rich” by Napoleon Hill. Hill writes that the trick is to envision all you want to accomplish on a day the evening before and the morning of. I’ve found that this simple visualization method helps me to sift out the less important, less urgent items from my to-do list.

What tips do you use to set priorities?

Make Your Feedback Matter

Kimberly N. Alleyne
http://www.kimberlynalleyne.com

Photo by Giulia Forsythe

Photo by Giulia Forsythe

 

If you’re in a leadership position, it’s a must that you master delivery of feedback to your team mates. Otherwise, you’re wasting their time — and yours. While feedback is expected, it is not helpful if it is not handled with care. Here are a few tips to make you feedback matter.

1. Celebrate great ideas and significant achievements privately and publicly. We reinforce behavior by reinforcement. So if an employee knocked it out of the park Derek Jeter style (Gonna miss you, Captain), broadcast it. When you brag about a job well-done, the chances for a repeat performance will shoot up!

Feedback Lightbulb

2. Give details and, if possible, examples. Vague commentary that is laced with anger, irritation or displeasure is not only ineffective, it just doesn’t serve anyone’s interests. Statements such as “I don’t like it” or “I didn’t get that” are unproductive and don’t advance anything. You can expect someone to improve in a weak area if you cannot articulate the problem. As much as possible, cite examples of the preferred outcome; and explain why something didn’t work.

3. Make feedback timely. Firing off a load of criticisms about a campaign that lacked luster months or even a year after the fact doesn’t make much sense, and it’s also unfair. Give feedback close enough to the incident/behavior/situation so that the individual who is receiving the feedback can actually remember what took place, absorb what went wrong and why, and implement improvements.

Photo illustration by Steve Ransom

Photo illustration by Steve Ransom

Are You A Boss or A Leader?

leaderLeadership Ahead

Kimberly N. Alleyne
http://www.kimberlynalleyne.com

I read a great article on qualities that great bosses share. The author listed eight qualities, all of which I co-sign; but I got to thinking that there are significant differences between an individual who is merely a boss or manager, and one who is a leader.

Here’s what I mean:

It’s easy for someone who is clever at directing processes, gifted at project management, and adept at organizing details. Sure. But can that same person rally a team to exceed goals? To glamorize the active pursuit of individual improvement for the betterment of the person, team and organization? Or to keep morale up when the organization faces financial crises? Or to inspire others to believe in themselves? No, not necessarily.

Throughout my career, I’ve worked for bosses, those whom were unremarkable (dreadful in some cases); and I’ve worked for leaders— those whom imprinted my life and made me professionally and personally richer. I’ve learned something from each of them, be it in the form of qualities I found admirable and incorporated in my own leadership style, or qualities that I knew I’d always strive to avoid.

As a result of my experiences I am fascinated with leadership approaches, especially as I navigate my own ride on the corporate elevator. As a leader, I consistently hunt ways to improve, particularly as it relates to leading people–that’s hugely important to me. The fact is not everyone is not gifted to lead people. Meeting team goals and organizational objectives are not open for compromise, of course. But when it comes to my team, how do I get it right? What works? How do I influence a team, its members individually and collectively, with lasting impact?

The leadership styles I have been exposed to have been are varied. And what I have noted is while there are many avenues to get to an end point, there are traits that separate bosses from leaders.

Boss versus leader

Olivier Carré-Delisle

  1. Leaders get in the game, they don’t sit on the sideline while their teams toil away. They push and pull with their teams.
  2. Leaders don’t hover or micromanage; they give others space to dream, create and execute. They give others freedoms to shine, to step up, or sometimes, to fall.
  3. Leaders inspire others to do what they think they cannot do.
  4. Leaders do not paint with a broad brush or only with one color. They lead others based on individual needs, strengths and weaknesses.
  5. Leaders groom their bench for growth. If a  leader is not preparing an individual/team for the next step up, she or he is doing them a disservice.
    Black Enterprise Favorited My Tweet
  6. Leaders understand that’s it not a solo show, it’s a team performance.
  7. Leaders give credit and celebrate others’ accomplishments.
  8. Leaders are honest, transparent and fair.
  9. Leaders understand that leadership is an eternal journey of learning, growing and adjusting.
  10. Leaders dream in color and dream big, but build in ample opportunity for course correction.
  11. Leaders are confident, but they know they’re not always right, and that they don’t always know the answer. They admit their mistakes—quickly.
  12. Leaders know that leadership is a gift, and they embrace it with respect, humility and honor.

 

Dr MLK

Leaders inspire–and lead–movements.

In the vast universe of leadership, there are inevitable twists and turns, ups and downs. Each ebb and flow is a mere dot point, not the final destination. There is always space to be better. Always. And a title is not necessarily a mark of leadership—if no one is following, or wants to follow—then it’s not leadership…yeah, not so much.

Are you a boss or a leader?

Great PageTurners on Leadership:

  • The 21 Irrefutable Laws of Leadership, John C. Maxwell
  • The Power of Positive Thinking (The Amazing Results of Positive Thinking), Norman Vincent Peale
  • Great on the Job (What to Say, How to Say It, The Secrets of Getting Ahead), Jodi Glickman
  • Bringing Out the Best in People (Aubrey C. Daniels)
  • Strengths Based Leadership (Tom Rath, Barry Conchie)