Kate Swaffer – Dementia, My Story

Not all Dementias are due to Alzheimer’s, nor do they reveal themselves in the same way. CLICK ON THE TEXT BELOW TO VIEW KATE’S VIDEO BLOG.

Kate Swaffer My name is Kate Swaffer, and I live in South Australia, Australia. This is my true story about being diagnosed with a younger onset dementia, probably Semantic Dementia. It is a hideous disease that is terminal, debilitating and challenging to live with.

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Alzheimer’s Stole My Father’s Speech – Our Dog Brought It Back

Lisa-AbeytaAPPCityLife-160x152by Lisa Abeyta: Founder, CEO APPCityLife Inc.

Yesterday afternoon, I had the privilege of spending a little bit of time with my dad, who is in the advanced stages of Alzheimer’s.

My parents have two dogs in their home, one of whom, Molly, is my father’s constant companion. More than once, I’ve watched him coo and talk to Molly even as his ability to form sentences and find the words he needs to communicate has deteriorated.

When my father and I arrived at my home yesterday to give my mom an hour to run some errands, our own family dog, Roscoe, greeted him at the door. For the next hour, my father petted and talked to Roscoe. Not wanting to lose the memory of the moment, I filmed a few moments of his interaction with our dog, amazed at the clarity of my father’s words.


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Lonely Cowboy

Martin BayneBy Martin Bayne:Martin has been an assisted living resident for more than 10 years, and credits many of his ideas to his experiences as a Zen Buddhist monk and an MIT scholar. His website is TheVoice0fAgingBoomers.com; his literary journal—showcasing authors ages 60 and older—can be found at TheFeatheredFlounder.com.

I now share a table in our dining room with a 99-year old woman we’ll call “M”.
When I met M for the first time – yesterday evening at dinner – I cried uncontrollably for a good half-hour. In retrospect, I realize that my tears were the first shed since my mother died last month. The last four weeks I’ve been wondering when the grief would finally hit . . . and yesterday was that day.

I suspect it’s also because M has an uncanny resemblance to my mom: sunken cheeks, translucent skin, and the other myriad realities of old age – making her even more precious.

Today at dinner, I found myself again in tears – only the second time in 4 years I can remember shedding tears in the dining room. This time the sluice gates opened when M mentioned her dog, Cowboy, and how desperately she missed him, “He’s slept with me every night for eight years,” she said. I asked her to describe the dog and I then realized the dog is now being watched over by a member of the staff, here at my facility. In fact, I remember seeing the dog just yesterday – brought in by the very same staff member – who it turns out is M’s granddaughter! [I promised M I would look into it tomorrow].

But M said something else today that triggered a small epiphany. You see, “ambient despair,” a term I coined to describe the phenomenon in which residents constantly subjected to abnormally high rates of dementia, death, depression and disability, “fail” quicker than their counterparts who receive the majority of their care in the community and at home.

Yet I’ve always felt that something was missing from the equation. And tonight, as I bit into a crab cake, and M finished talking about Cowboy, she said, “The trouble with being this old is that everyone tells you what to do . . .as if you were a child.” That’s when the lights came on. The inconsistent, manipulative policies of both staff and administration in any top-down management system eventually trickle down to the residents.

Here’s an example: my facility has the ability to pump FM radio throughout the building, and every day they anesthetize the residents with the same, dreary, monotonous “golden oldies” station. All of which begs the question, “Did anyone ever ask the residents what they want to listen to?” (There’s a great little NPR affiliate station in Bethlehem, PA – just a stone’s throw from where I live.)
So, every day, at an arbitrary time slot – whether I’m talking to a friend, writing an essay or reading a magazine on the john, I can be absolutely certain I’ll hear those immortal words:

If you wanna’ be happy
For the rest of your life,
Never make a pretty woman your wife,

So from my personal point of view,

Get an ugly girl to marry you.
A pretty woman makes her husband look small

And very often causes his downfall.

As soon as he marries her

Then she starts to do

The things that will break his heart.

But if you make an ugly woman your wife,

You’ll be happy for the rest of your life,

An ugly woman cooks her meals on time,

She’ll always give you peace of mind.
Don’t let your friends say

You have no taste,

Go ahead and marry anyway,

Though her face is ugly,

Her eyes don’t match,

Take it from me she’s a better catch.
Say man, 

Hey baby.

Saw your wife the other day.


Yeah, she’s ugly.

Yeah, she’s ugly but she sure can cook.


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Dementia – The Last Childhood

By: Victoria Orlando – Teacher, Artist, Care Partner, Volunteer and Person-centered Soul

Four faces of lifeI was thinking yesterday, just before listening to a USC webinar about their gerontology program, how the course of Alzheimer’s and other dementias can include as many years as childhood. Few parents would allow their children to live those years in a physical-medical model, depriving them of the psychological, emotional, social and spiritual dimensions of care, yet our culture tacitly endorses this for our elders. I was going to ask the staff from USC if they had begun developing a program for person-centered and creative dementia care, but the emphasis was on how they were developing technologies for elders, with technology being perhaps, a nice link between the old and the young. Respecting their approach, and realizing the program I am hoping to see will not be available next semester at USC, I continue to ask myself, how can we get mainstream education involved in providing compassionate awareness and career options for holistic dementia care?

As care partners, we can find courses from the University of Bradford, or sensitive training from David Sheard’s Dementia Care Matters in the UK, learn from Hogeway, the Eden Alternative, Planetree, MoMA, and many other programs that have led the way person-centered care, and follow the art, music, horticulture and movement therapists who have used their skills brilliantly to create new ways of creating expression for people living with dementia.  But, I will not give up thinking how wonderful it would be if a higher learning institution would welcome a full program – not just courses – that specifically addresses dementia care and its many components, emphasizing, in addition to the science explaining any of the illnesses, the emotional, spiritual, social, expressive programs to support it, starting from home-care through residential settings. Cancer used to be such a frightening disease; some people would not even use the whole word, yet now attitudes have changed. Alzheimer’s and similar illnesses need more light, more exposure so they are not so feared.  Once fear lifts, understanding and care expands. We might not have cures but we do have models of acceptance and profound compassion and healing inspiration and comfort.

Today, I discovered for the first time that the world-known Mind and Life Institute in Massachusetts dedicated “to building a scientific understanding to reduce suffering and promote well-being” – offers research workshops and up to $6,000 in funding to advance work on a particular project or idea.  Creating a holistic curriculum for compassionate and comprehensive dementia care in many settings could fit their initiatives.  To build such a program and to have a university or college that truly seeks to include and promote this program to lead the way would be fantastic – and beyond me!  The authors of the wonderful white paper you sent me have such a depth of expertise and skills for more of what’s needed to do this. Do you know if creating a full course of study is something the experts are thinking about? (How to get a well-developed program reflecting the CCAL white paper, “The Quality Chasm”, into a school, I don’t know, but out of curiosity, I’ve written a friend and former dean from Rutgers to see how a school creates programs.)

They say, it is important to be nourished by your passion because even if others seem uninterested, a dream has its own life and will give you its energy for your next step.  I have no titles or noted expertise in field of dementia, but I can see more in people than many, and it moves me along, just as it moves you and so many others who share this dedication.  To offer students the opportunity to develop, create and help deliver holistic programs for people living with dementia as a meaningful career path would be so valuable in generating a life-giving culture change around such illnesses. Given the anticipated number of people diagnosed with dementia ahead of us, my hope is that we will be ready for it; with programs equal to the people they serve.

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Building a Person-Centered Culture for Dementia Care


dementia care SmallWith millions of Americans experiencing dementia and the number growing with an aging population, researchers continue to seek effective prevention and treatment methods, while many long-term care providers are placing more emphasis on how best to care for people with dementia.

“We’re hearing more from families regarding their concerns about the quality of care and services available for their loved ones with dementia, not surprising given the millions of people affected by it and how costly care is,” says Jackie Pinkowitz, M.Ed, chair of CCAL-Advancing Person-Centered, a national advocacy organization, that created the person-centered National Dementia Initiative. Pinkowitz is also an instructor at Rutgers University School of Social Work, Gerontology Program.

The 2013 Alzheimer’s Disease Facts and Figures from the Alzheimer’s Association estimated 5.2 million Americans have Alzheimer’s disease, a number projected to increase to 7.1 million by 2025 and 13.8 million by 2050.

“The best practice is person-centered care,” reports Ruth Drew, director of family and information services at the Alzheimer’s Association in Chicago. “Care is focused on the individual.”

Person-centered care offers a humanistic and holistic approach to caring for someone. It incorporates not only physical considerations but also the person’s psycho-social and spiritual well-being. “It’s a multidimensional framework, and it requires owners and a governance board wanting to make these changes,” says Pinkowitz.

The Dementia Initiative brought together an expert panel to determine best person-centered practices and offer guidance. The initiative produced a consensus white paper, Dementia Care: The Quality Chasm. “We want stakeholders across research, policy and practice to use this paper as a call to action to collectively address and advance person-centered solutions,” Pinkowitz adds. The document presents a history of the philosophy for person-centered care as well as operational and personalized practices for delivering care in this way. It also offers recommendations to address barriers and challenges to care.

Many LeadingAge members have embraced person-centered care and have developed innovative programs to advance dementia care within their organizations.

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Understanding Needs and Emotions of the Person With Dementia

By Rhonda Rotterman, Program Director for the UB Inst. for Person-Centered Care, University of Buffalo School of Nursing; and the former executive director for the Western New York Alliance for Person-Centered Care, a grassroots collaborative of communal living environments funded by the Oishei Foundation.

music-and-dementiaPeople will forget what you said, people will forget what you did, but people will never forget how you made them feel ~ Maya Angelou.

The above quote is the perfect phrase to depict person-centered care and one that holds true despite physical or mental frailty. When we begin to deteriorate, there is one facet that remains intact – our emotions. Our feelings, even if we can’t accurately express them, are always there.(Click for video)

Caregivers often feel helpless about what to do when their loved one is suffering from a cognitive impairment, where the individual is no longer able to navigate their world “normally” or able to communicate the way we do. Usually we perform trial and error responses such as food/hydration, use of the bathroom, rest or activity. When those don’t work and we are out of ideas we often ignore, placate, fabricate tales to deflect whatever they happen to be obsessing about at the time. The problem with that is that we still haven’t solved the root cause of the problem or unmet need they are trying to convey to us.

Think about what makes you who you are: your passions, interests, customary routines, careers and your relationships. If you were to become ill, you still would remain the same person with the same desires and needs. Physically we all need the same things: food/water, shelter, safety and the means to provide these things. Aside from these basic human needs, what sets us apart from one another are our unique skills, interests, personalities, etc. THAT is what makes us who we are and THAT remains throughout our life. Our brains become programmed based on the skills we develop; our interests become habits, our habits become our personalities and our personalities become our uniqueness.

If we are to understand those with dementia, we need to truly know the individual, their uniqueness, what makes them who they are and to be able to tune into their feelings. There is where a higher communication lies. Use your intuition, your gut, and your feelings when the things we view as behaviors are manifesting. If the individual’s brain can no longer communicate in a way we can understand, then we must find a new way to understand.

Everyone, every moment needs to have a sense of purpose. All of us need to live in and through that sense of purpose; otherwise, we are simply passing the time until we die. Relationships contain an element of spirit, mind and body and relationships are the fundamental building blocks of humanizing care.
How often do you take the time to understand the person with dementia, as well as be understood?

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If It Had Been a Child Care Center They Would Have Shut It Down – My Two Cents on the Frontline Special

by: Anthony Cirillo, FACHE; ABC; Healthcare & Aging Expert; Director CCAL

anthonyAfter watching, for some reason I was not as shocked at what I saw and maybe that is because I have heard about tragic incidents here in the Charlotte area that certainly equal those reported. The most notable was a nursing facility where a resident was locked in a closet for days. No one could find her. When they did she died shortly after at the hospital.

I would hate to think I am numb to the repercussion. But I do think that what one woman said on the special was most telling – if it had been a child care center that caused a death they would have shut it down and sent people to jail.

There is simply no outrage and there needs to be. If we had a culture that truly was concerned about our elders there would be outrage. And culture is at the heart of this. It is a societal culture around aging. And it is also the culture of organizations that set the tone for the care delivered.

The quantity of incidents reported on the special at the largest AL provider might suggest that there is a culture that places more emphasis on money than people. But that is a blanket statement and they are never very accurate. Yet, the tone of the culture is the leading edge for the care that follows. I have reported on companies that I know get it. And it is all about culture.

I do think Emeritus was quick to blame staff error and residents with dementia for why things don’t always go well. When things like this happen, it is the leadership, period, that needs to own up. That is where the tone of the culture is set.

Next topic, transparency. It is all the buzz in the hospital sector and by hook, crook or regulation, SNFs have been dragged into this as well. Here is the thing. Whether regulated or not, you need to own transparency. I am sure you have lost count of the number of sites that rate facilities and progressive companies like Silver Living are upping the ante. Companies that sign on with them embrace a level of transparency until now unseen in the arena.

People will find things out! And if you have the wrong type of culture, employees will leak things out.

Next, I believe that the litigious culture we have in healthcare is causing many of the problems. But having seen this special, it is clear it has to stay in place. There is no other recourse at the moment in assisted living.

So let me end with two things.

All of my hospital, SNF and AL clients hear me harp non-stop on this point. The experience of care is the marketing. Your front line staff is the marketing department. You must make that connection in the organization to see how this all works together.

And speaking now as one human being to another. I am a baby boomer and I want to and am preparing to age in place. From the house retrofit to the technology I need, my wife and I are planning now. Talk privately to any ED whether in a SNF or AL and they will tell you they want to do the same – age in place. No one wants what you offer and in time no one will. The implication is that you need to take a serious look at your business model.

And on an individual level, it means preparing for aging sooner in life – physically, financially , emotionally. I call it educated aging. It is about aging with a quality of life not a crisis at the end of life. This entails a huge amount of self-responsibility in a culture where we have become totally dependent on the healthcare system and the expectation that we can go to pot because there will be a pill, implant, or procedure to fix everything. Come on. Suck it up cupcake.

For now, let’s take a breath. I do not think it can be business as usual in AL after this special. The damage is done. So move on from here. Create the best experiences you can and then tell your story.

P.S. Major kudos for Larry Minnix’s eloquent commentary to this special. There is someone not afraid to say it like it is. I am sure he’ll hear about it too, positively and negatively.

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FICO Credit Scores Predicting Medication Compliance – Benefit or Bane

balanceby Lon Pinkowitz: CCAL Advisory Board

You may have read that FICO, the credit score people have used large data sets to draw a correlation between people’s credit scores and the likelihood that they will be compliant in taking their prescription medication. FICO says that the correlation is around 70% accurate. The upside of having this knowledge is the ability to predict which patients should receive e-mail reminders to take their medication, and thereby remain healthier and avoid a medical crisis.

This is all good assures FICO’s good twin. After all almost 25% of hospital emergency room visits are a result of medication errors and non-compliance. By reducing non-compliance, one can reduce emergency room visits and thereby save a ton of money. All true on its face; but now comes the murky part.

FICO’s data sets upon which they base their assumptions were gathered during a world-wide financial recession bordering on a depression. We know that when there is a choice between eating and medication, or rent and medication, or the car payment and medication – medication loses. Ergo, using data from this period will most likely enhance the perceived correlation between poor credit scores and medication compliance. This does not mean that the correlation is wrong, just not as robust.

But wait, we have not yet heard from the evil twin; now comes the scary part. Suppose I work for an insurance company. I know that people who are less likely to be compliant in taking medication are more likely to have higher medical bills. Would not a lower FICO medication score make our insurance company less enthusiastic about providing insurance to people with these lower scores?

Knowledge is power; power can be used for beneficial as well as destructive ends

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Meaningful Life: 8 Lessons From Our Elders on Leading a Quality Life

by: Anthony Cirillo -  CCAL board member and healthcare consultant and aging expert

rowdy seniorsThere is a Taco Bell Super Bowl commercial in which a bunch of elderly folks get rowdy while the song “We Are Young” by a band called Fun plays in Spanish. It’s irreverent, but it is fun! The English lyrics read:

Tonight / We are young / So let’s set the world on fire / We can burn brighter / Than the sun.

On most days you probably don’t feel like you can set the world on fire. But caregiving doesn’t have to be a bad experience. Caregiving is an opportunity to give back and have a closer personal relationship with the person to whom you provide care.

Over 20 years of performing for elders in nursing homes and assisted living communities, I’ve learned a number of life lessons. One woman who was blind and in a wheelchair had a better quality of life — in a place we associate with death — than many I know on the “outside.”

I have observed eight traits of elders living a quality life that can teach us all something. In fact, I turned these lessons into a keynote presentation called “The Meaning of Life,” which I give for caregiving groups and long-term care professionals.

  1. Have purpose.   Ruth Anne, a resident in a Charlotte nursing home, was president of the resident’s council, delivered mail, and never kept still. When I interviewed her for my book, Who Moved My Dentures?, she said she prayed to God every day for her purpose. I mean, wow! Do you know your purpose in life? If so, great — but understand that it will evolve and change over time, so watch out for the signs. You will not be a caregiver forever.
  2. Stay active.   Why is my 91-year-old mom still getting around and driving my sister crazy? She went dancing three times a week up until her mid-eighties. My equally spry mother-in-law is in her early eighties, walks every day, and takes no medications. Put time aside on your calendar for fitness.
  3. Laugh every day.   The residents I have the most fun with are those who kid around with me, like Esther, my designated heckler. Bring humor into your life and workplace. Listen to comedy. Watch something humorous. Buy a book on stand-up comedy. Open yourself up to fun.
  4. Learn something new.   One of the groups I write about in my book calls itself The Raging Grannies, a protest group of elders who use song parodies. They involve other residents by having them help with costumes and songs. It keeps them young because their minds are constantly stimulated. As Jim Rohn said, “Formal education will get you a job. Self-education will get you rich.”
  5. Nurture friendships.   The strong friendships that develop in assisted living communities are amazing. Seniors find that the social aspect of the community is life-sustaining. There are many studies on the value of friendship and socialization. If you are shy and reserved, try to step out of your comfort zone and talk to and meet new people. Be a good listener. Estranged from someone? Life is too short. Make amends.
  6. Have a great attitude.   My friend Jean, a CCRC resident who has long passed, when first introduced to her new living arrangement saw it not with pain but with possibilities. This shy, widowed housewife embraced community life and came to all of my performances. The importance of a positive attitude has been beaten to death. But know this: Your attitude reflects on you, and you — yes you — have your own personal brand of attributes that others will use to define you.
  7. Be grateful and
  8. Be loving.   We’ll put the last two together. The seniors I hang out with have unconditional love for people. But what really strikes me is how grateful they are for everything. Try this: Every day, be grateful for three things in your life. Keep a journal documenting one positive thing that has happened to you that day. Miracles are everywhere. When you are grateful, they show up.

Your health and well-being are important. Don’t sacrifice them as you care for a loved one. Pay attention to what you can learn from all of this. Your caregiving is a journey, and the rewards are the lessons you learn from paying attention to that journey.

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Coming Soon to Senior Living – the Consumer Electronics Show

by Jack York, CEO, It’s Never Too Late

Remember being 10 years old, heading to Disneyland, (I grew up in Southern California so that’s my frame of reference – plug in your own favorite amusement park), feeling your heart race as you waited in line to get on the Matterhorn?  As you get into your 50’s its hard to replicate those shots of exuberance and guilt free adrenaline, one way to approach that exhilaration for technology consumers is to head to the Consumer Electronics show in Las Vegas.

The show is a cacophony of technology innovations, solutions and guesses as to the future.  And its insanely huge!  I’m sure a lot of readers are familiar with the larger senior living provider conferences like Leading Age, AHCA and ALFA –  in a good year upwards of 8,000 people will attend those shows.  Try this on for size, at CES there are over 153,000 attendees and 3100 exhibitors!  The overall floor space takes over approximately the size of 37 football fields – yikes!    The techno guru of our company, Michael Gardner, spent 4 days at the show and had a pedometer strapped on to count his steps, final answer for his effort was 98979 steps (49.5 miles).

The show touches everything.  All kinds of insane new car designs (be alert for driverless cars!), innovations in audio and video technology, crazy robotics, new types of sensors for the home,  virtual interactive gaming devices, preparing for the digital home of the future.  And as you wander from booth to booth you meet everyone from the savvy sophisticated executives from world class conglomerates (Samsung, Sony, Phillips, Ford, etc) to the fledging entrepreneurs from remote places in China trying to change the world with their one idea.  It’s a Kiplingesque integration of marketing sophistication side by side with the hucksters you meet at a state fair.  The fact that its in Vegas only adds to the absurdity of the experience, whatever decadence you choose to partake in on the show floor is matched by the decadence of your choosing at 3 am on the Vegas strip!

My shtick is always leaning towards finding how this paradise of technology and innovation can meander its way into senior living, and aging in general.  Part of the solutions are obvious, and the marketplace is catching up with the need.  Integrating sensors into clothing to monitor vitals, smart homes of the future that learn an individual’s needs and send the appropriate signals wirelessly to other devices, integrating health and wellness into a person’s smart phone, etc, etc.  It is exciting to see that common sense type of mindset beginning to work its way into the mainstream technology landscape.  I always enjoy, however, finding nuggets of technology that 100% contribute to the quality of the older person’s (or disabled person’s) quality of life.

Two things I fell in love with, and we’ll integrate into our own product pending testing results, are inexpensive, engaging, life changing devices.  The first is a baseball cap, yes, a baseball cap!  What’s so special about it?  You put the hat on, and a small, undetectable wireless speaker embedded in the hat rests alongside your skull.  Just wear your hat, and the sound from your phone or PC is conducted directly into your inner ear through vibration. Our CIO, Lili Dwight, has not had hearing in one of her ears for almost ten years and she texted me from DIA last week (with her hat on) saying for the first time in the last decade she could listen to music stereophonically.   And the guy hawking it was awesome – Mike Freeman, the product developer. (www.maxvirtual.com).  He was wildly exuberant, hands flailing away left and right as he tried to revolutionize the world one ear at a time.   The other device was a musical instrument called Beamz, it’s a 3 pronged instrument about the size of a 20” monitor where when you put your hands between the prongs of the device you break a laser beam that plays a specific musical instrument.  A musical neophyte like me can be transformed into a concert pianist or a jazz guitarist depending on the background music you can seamlessly select.  And it runs right off of your PC.  What I love about it from our company’s perspective is that it is just as appropriate for a person far down the dementia path as it is for someone fiercely independent at 93, no skill necessary to apply!

I like to have my ideas verified by industry experts, so the week after CES I took both of these devices with me to the headquarters of Brookdale Senior Living in Tennessee.  To my delight, they got it!  Their associates  enjoyed playing with the musical instrument, and fundamentally saw the benefit of the hat for the thousands of residents they serve with varying degrees of hearing loss.  Their executives care about this stuff!  You should hear one of the their executive VP’s  (Todd Kaestner) talk in detail about ambient decibels and background noises  and how that can impact a residents quality of life – I can’t keep up!  It’s the perfect storm to find organizations that look at technology as something above and beyond medical records and pill dispensing.

Another thing I like about CES is the mindset of commercialization and the appropriate price points.  Over the years I’ve attending dozens of conferences dealing with various types of adaptive technology and software / hardware solutions.  The problem is the price points, it’s great to see technologies that can change people’s lives but if no one can afford them what’s the point.  It’s a tough line to walk but the very definition of “consumer” electronics means you’re trying to reach the masses, that means the price points matter.  The baseball cap, for example, will cost about $50 – $60 dollars.  Think about that for next year’s Christmas gift for Grandpa!

So my recommendation for any of you technophiles, or even technophobes, is to get CES on your bucket list.  It’s a no lose proposition.  You’ll find things that benefit yourself, benefit the elders many of your serve, benefit people you love, whether it be your grandkids or your mother in law.  And you can instantly become hip to your own kids.  Next year I’m bringing my 20 year old son JP and my 18 year old son Nathan with me to the event, they’ll be able to explain to me all of the things I can’t figure out.   The world is changing whether we like it or not, CES is a way to hop on the train and see which way the world is turning.  All that’s required to attend is a few hundred dollars of cash and your imagination.

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