Inside the O’Briens shines a light on Huntington’s Disease

There are many diseases in the world and many in the media so much they become 22716194common knowledge.  Last year the ice bucket challenge gave worldwide attention to ALS, which probably a lot of people didn’t know ALS even existed.  It’s a disease that affects roughly 30,000 Americans at any given time.  ALS can strike anyone, it is not hereditary.

Then there is Huntington’s Disease.  It’s different than ALS in many ways except that it affects a small number of people.  Huntington’s Disease is an inherited condition in which nerve cells in the brain break down over time.  This is a hereditary disease that affects 20,000-200,000 Americans a year and the symptoms can start just past the age of 30.

In Lisa Genova’s new book Inside the O’Briens, she takes on Huntington’s Disease.  Joe O’Brien is one of Boston’s finest.  He’s been on the force for over 20 years and is married to Rose and they have four adult children.  Now forty-four, Joe is dropping things, having a hard time concentrating, can’t seem to keep his body still and his temper has been getting worse for the past six years.  Rosie finally convinces him to see a doctor.  Joe thinks the doctor will say he needs knee surgery because he has been falling.  Instead he hears the words Huntington’s Disease.  He also finds out that his kids could have it and that his mother didn’t drink herself to death even though that is what he was told when he was a boy.

At first Joe has a hard time processing this information.  Then he embraces the disease.  The four children need to decide if they want to find out if they test positive for the gene or stay ignorant.  Their son JJ and his wife have recently found out they are going to have a baby.  If JJ has the disease, will it be passed to the baby?

The other family member that is followed closely is Joe and Rosie’s youngest daughter Katie.  She really struggles with deciding if she should find out if she is gene positive or not.  If she isn’t, how is she going to deal with knowing her professional dancing sister, Meghan, is positive?  Someone who loves to move.  Katie also struggles with how to tell her family she is in love but not an Irish-Catholic from the neighborhood.  The struggles Katie goes through trying to decide if she should find out and the struggles with wanting to live her life away from her family sometimes frustrated me because I would want to know.  She is almost stuck in limbo not knowing what she wants to do or what she should do.

This book is a heartbreaker to read.  The O’Brien family are very close.  In fact they live in the same house, but on different floors.  While reading, I kept thinking would I want to know if I had the disease.  I think so, I would want to be able to prepare.  I would want to do as much as possible to be healthy and prolong my life.  I would want to know so I could not have any biological children but maybe adopt.  I would want to know so I could prepare for the future so my loved ones wouldn’t be stuck cleaning up any messes.  And I would want to know so I could see as much of the world as possible and live the fullest life I possibly could.

If you are a fan of Still Alice, which is another heartbreaking book by Genova, then you need to pick up Inside the O’Briens.  A beautifully written book that will take you on a ride that will sadden you, make you care for the O’Brien family and smile at the courage Joe shows through some of the darkest times of his life.  I will say I was very frustrated with the ending and hope if this ever becomes a movie they change the ending.  If you read the book you will know what I mean when I say it was a little rude to end it that way.

Book description:

From award-winning, New York Times bestselling author and neuroscientist Lisa Genova comes a powerful new novel that does for Huntington’s Disease what her debut Still Alice did for Alzheimer’s.

Joe O’Brien is a forty-four-year-old police officer from the Irish Catholic neighborhood of Charlestown, Massachusetts. A devoted husband, proud father of four children in their twenties, and respected officer, Joe begins experiencing bouts of disorganized thinking, uncharacteristic temper outbursts, and strange, involuntary movements. He initially attributes these episodes to the stress of his job, but as these symptoms worsen, he agrees to see a neurologist and is handed a diagnosis that will change his and his family’s lives forever: Huntington’s Disease.

Huntington’s is a lethal neurodegenerative disease with no treatment and no cure. Each of Joe’s four children has a 50 percent chance of inheriting their father’s disease, and a simple blood test can reveal their genetic fate. While watching her potential future in her father’s escalating symptoms, twenty-one-year-old daughter Katie struggles with the questions this test imposes on her young adult life. Does she want to know? What if she’s gene positive? Can she live with the constant anxiety of not knowing?

As Joe’s symptoms worsen and he’s eventually stripped of his badge and more, Joe struggles to maintain hope and a sense of purpose, while Katie and her siblings must find the courage to either live a life “at risk” or learn their fate.

Praised for writing that “explores the resilience of the human spirit” (The San Francisco Chronicle), Lisa Genova has once again delivered a novel as powerful and unforgettable as the human insights at its core.

Until next time…enjoy the view from your passenger seat

This fan will be Forever Royal

Last year I had the pleasure of attending the American League Wild Card game.

Standing outside Kauffman Stadium before World Series Game 6.

Standing outside Kauffman Stadium before World Series Game 6.

The crazy game where the Kansas City Royals were down 3-7 and came back to win in the 12th inning 9-8.  This is also the game where I lost my voice and the game where I fell hard for baseball, again.  The day I became a Forever Royal.

I’ve been a baseball fan since I was a little kid.  The atmosphere of the stadium, walking through the tunnel and getting your first glimpse of the field with the pristine green grass.  The crack of the bat, the players diving for catches, the triple plays and even off-the-field activities like vendors throwing peanuts a long distance to someone who passes their money down a row or high-fiving the strangers around you after a great play.

Baseball stadiums are like going to a family reunion.  You might not know the people around you, but you are all there for one thing, to have a good time.  I also like to people watch as much as I like to watch the game.  It’s fun to see the little kids smacking their fist in a glove just hoping for a foul ball.  The look on their face says they know that ball is coming to them and they will catch it.

Photo courtesy of KC Star.

Photo courtesy of KC Star.

I’m sure this summer, little boys and girls are going to be out on the field in Little League imagining themselves making that sliding dive in the outfield just like Alex Gordon or Lorenzo Cain.  Or sacrificing their bodies into the visitor’s dugout like Mike Moustakas did into the third base field suite.

Over the last few years, I knew a handful of the Royals players’ names but not very many.  After attending the AL Wild Card game, I started paying attention to the Royals stats.  I carried on conversations about the Royals with strangers while standing in line at the grocery store.  I actually watched the games on TV.  I haven’t watched an entire baseball game on TV since I was probably 12.

Then I got a call from my husband that I thought I would never receive.  A call that took me back to my childhood.  A call that allowed me to check an item off my bucket list. “Do you want to go to Game Six of the World Series?”  Did I want to go?  Did that even have to be asked?

I’ve always wanted to attend the World Series and to have four games in Kansas City made it even more special.  Just to attend one game and a game where the Royals won 10-0 to stay in the chase for the title, made it that much better.

World-Series-Royals-FieldThis is what I like about the Kansas City Royals:  The players don’t act like superstars that fans can’t approach.  The players have embraced their fans and the City of Kansas City.  That was obvious when some of them showed up at the Power & Light District after a game and paid for drinks.  They tweet about their favorite places for breakfast while eating.  They are active in the community by coaching their child’s sports team and leading Sunday school lessons at their local church.

Then there is Salvador Perez.  I follow Perez on Instagram and all the videos he posts with his teammates, especially Cain, humanize the team.  It shows how they are a family and how much they get along.  It shows their personalities.  It shows how they are a bunch of young guys doing what they love, playing baseball.

As opening day (April 6) draws closer, I look forward to attending a game or two or three or four.  I know lots of fans, like me, can’t wait for the 2015 season to begin.  It’s apparent by the record amount of season tickets that have been purchased.  I hope the Royals have a successful 2015 season and at least make it to the playoffs.  And if they don’t, that’s okay, I will enjoy watching a team doing something they love and I will always be a Forever Royals fan.

Until next time…enjoy the view from your passenger seat

Both sides of the race

I’ve been a runner since 2000.  Not very long, but when you have an older sister who has

Me and my sister Michele in 2003 at the Walt Disney Marathon

Me and my sister Michele in 2003 at the Walt Disney Marathon

been a runner since middle school, you eventually catch the bug.  So at 34, I became a runner.  Not a fast runner, but a runner.  Once I experienced how great I felt after running, I decided to be just like my big sister and run a marathon.

Even though my sister lives in Omaha, she became my coach.  She taught me how to increase mileage without getting injured.  She listened when I complained about different aches and pains and when it was hard to get outside in the winter.  Once the temperature goes below 40, you won’t find me running outside.

I’ve been a Disney fan all my life so of course my one and only full marathon had to be the Walt Disney World Marathon in 2003 and of course my sister traveled with me.  It was a wonderful experience running through the parks, high fiving with the characters and coming around the corner towards the finish line seeing my sister crying and cheering.  She’s a lot faster than me and finished almost 2 hours faster.

Part of my training was running the 2002 Humana half marathon on November 2.  This was the Waddell & Reed Kansas City Marathon before the Kansas City Sports Commission took it over.  The finish line was uphill on 12th Street from Main ending at Barney Allis Plaza.  Brutal for any fitness level.  If you don’t know the street, go drive 12th Street from Main to Wyandotte and let me know what you think about the current finish line.

Now I’m on the other side of a marathon, the planning side.  I’ve worked at the Kansas City Sports Commission (KCSC) for the past eight years and have experienced marathon weekend change and grow.  Does anyone remember the finish line ending in the parking lot at Fiorella’s Jack Stack/Lydia’s in the Freight House District?  Does anyone remember the wedding party driving right through the finish line festival for their reception at Lydia’s?

There is a lot that goes into planning marathon weekend.  When I joined KCSC in 2007, there was one full-time events staff member and now we have a department of four.  In 2007 there were a total of 4,558 participants.  Last year 8,780 crossed the finish line.

Separating trash, recycling and compost items at the WIN for KC Triathlon in 2011

Separating trash, recycling and compost items at the WIN for KC Triathlon in 2011

Working for an event planning organization has really opened my eyes, especially an event this size.  It never crossed my mind the blood, sweat and tears that go into planning a race.  And yes, there are tears from stress, frustration and sometimes tears of joy that the weekend is over.

First you need a steering committee made up of volunteers who bring all kinds of experience to the table.  Some are runners, some are not.  Some like sports and some just like to volunteer.  You also need a lot of volunteers throughout the three-day event.  And I’m talking A LOT.  Over the past eight years we have never needed fewer than 1,200 volunteers and up to 1,800.  These volunteers are very important, especially course monitors.  If there are not enough course monitors along the course, the race cannot happen.

The Events Department works on marathon weekend year-round.  There is designing brochures, logo, medals, email headers, participant T-shirts, volunteer T-shirts, pacer T-shirts, banners, magnets, advertisements and signs.  The staff visits with different businesses to become sponsors.  There are financial sponsors and in-kind sponsors.  You have to make sure water, food, medals all arrive in time and on the correct day.

Then there is securing bands, police, vendors, permits, medical team, security, clean-up team and timing company.  There is securing fencing, port-a-potties, tents, and rental trucks.  Several of our staff sleep very little the week of the marathon and from Friday-Saturday several staff members and volunteers stay up all night setting up the start and finish line.

Our staff at the WIN for KC Triathlon in 2014. I'm in the middle in the hat.

Our staff at the WIN for KC Triathlon in 2014. I’m in the middle in the hat.

The Waddell & Reed Kansas City Marathon with Ivy Funds is also a green event.  There is a lot more than collecting old running shoes and having bins for trash, recycling and compost.  Missouri Organic does a fantastic job collecting the bins and then they have to go through it all and make sure everything was placed in the correct bin.  At our WIN for KC Women’s Triathlon at the end of July, it is our staff, interns and volunteers who go through the bags.  I have been on the green team many years and you have to empty every bag, go through it and separate everything.  There have been years it’s so hot our rubber gloves filled with sweat.  It’s a less desirable task and I admire organizations like Missouri Organic who try to make our planet healthier.

Our entire staff is comprised of athletes.  Some have participated in races and some currently participate.  So know, even though we are exhausted, sleep deprived and a little loopy, we are celebrating your accomplishment when you cross the finish line as well as reaching our own finish line when everything is packed up and in the trucks Saturday afternoon.

Until next time…enjoy the view from your passenger seat

Canary takes you into the world of drugs and undercover work

Canary by Duane Swierczynski is a nail biting, action packed story.  Throughout the book 22500980college freshman honor student Sarie writes a letter to her Mom who has died.  In these letters, Sadie tells her Mom what is going on in her life.  This is a great concept for a book and is used in a really great way for some revelations.

The book starts out with Sarie telling her Mom about a party she is attending.  Usually at parties, Sarie acts like she is drinking but nurses a beer all night.  She also always passes up on drugs.  But at this party she decides to actually inhale when the bong goes around.  That is when she notices Drew “D” Pike, fellow honors student watching her.  He is someone she likes but doesn’t know very well.

D asks Sarie to drive him to the south side of Philadelphia, which is out of her way.  Since she likes him she says why not.  What she doesn’t know is that D is a drug dealer needing to pick up drugs and that the drug house is being watched by Detective Wildey.  Wildey arrests Sarie and D gets away.

Swierczynski does a great job of fleshing out the characters so you really get to know them.  You get to know Sarie, her father and brother, her friend Tamara Pleece, Detective Wiley and some of the drug dealers.  I have to say one thing that made me mad, what 19-year-old honors student in college covers for a guy she doesn’t really know risking being arrested.  Sarie is probably too smart for her own good.

I really enjoyed this book and found myself wanting to avoid working so I could continue reading.  I don’t think I would ever want to deal with the drug world, it is too scary.

If you tend to look at the end of a book before you are done.  Don’t because the last two paragraphs are a shocker.

Book description:

Honors student Sarie Holland is busted by the local police while doing a favor for her boyfriend.  Unwilling to betray him but desperate to avoid destroying her future, Sarie has no choice but to become a “CI”–a confidential informant.  Philly narcotics cop Ben Wildey is hungry for a career-making bust.  The detective thinks he’s found the key in Sarie: her boyfriend scores from a mid-level dealer with alleged ties to the major drug gangs.

Sarie turns out to be the perfect CI: a quick study with a shockingly keen understanding of the criminal mind. But Wildey, desperate for results, pushes too hard and inadvertently sends the nineteen-year-old into a death trap, leaving Sarie hunted by crooked cops and killers alike with nothing to save her–except what she’s learned during her harrowing weeks as an informant, which is bad news for the police and the underworld.  Because when it comes to payback, CI #137 turns out to be a very quick study.

Until next time…enjoy the view from your passenger side

The Moon Dwellers is a fantastic dystopia story

The Moon Dwellers by David Estes is a wonderful young adult dystopian story.  Hundreds The Moon Dwellersof years in the future, humans have done enough damage to Earth that civilization is now living underground in the Tri-Realms.  The privileged live on the Sun Realm, which is the closest to the surface.  There is also the Moon Realm and Star Realm.  The Sun Realm takes most of the power generated and leaves almost nothing for the other Realms so they are very dark and dank.

The story starts out with Adele who has been put into the Pen because of parent’s crimes of treason.  As she is sitting watching a parade go by that includes the President’s son, two people she doesn’t know sit down with her.  Tawni and Cole immediately make friends with Adele.  In the parade, the President’s son Tristan is waving at the crowd when he and Adele lock eyes making them both experience a searing pain and feel sick.  Something neither one of them has ever experienced before.

As a war breaks out, Adele, Tawni and Cole are able to break out of the Pen and go on the run.  Adele is determined to rescue her sister from a horrible orphanage and her parents from their confinements.  While the three of them are on the run, Tristan has decided to find out who Adele is and find her.  He goes out into the Moon Realm to find Adele because he feels a connection and wants to find out why they have a connection.  He also doesn’t agree with how his father runs the Tri-Realms.

There is lots of action and danger throughout the story.  Multiple times you can’t imagine any of them will survive.  David Estes is a great storyteller who pulls the reader along for the ride with his characters.  He makes you care for them and you want the characters to succeed.  The point of view of the book goes back and forth between Tristan and Adele, which was nice to see the different perspectives.  You get to see what each of them goes through as Adele looks for her family and Tristan looks for Adele.

I could…not…put…this…down!  I need the next installment and I need it now!  Do I recommend this book, you bet!  Will you be entertained, you bet!  Will you want more, you bet!  Well done David!  Now, time for me to devour everything else he’s ever written.

Book description:

In a desperate attempt to escape destruction decades earlier, humankind was forced underground, into the depths of the earth, creating a new society called the Tri-Realms.  After her parents and sister are abducted by the Enforcers, seventeen-year-old Adele, a member of the middle-class moon dwellers, is unjustly sentenced to life in prison for her parents’ crimes of treason.

Against all odds, Adele must escape from the Pen and find her family, while being hunted by a deranged, killing machine named Rivet, who works for the President.  She is helped by two other inmates, Tawni and Cole, each of whom have dark secrets that are better left undiscovered.  Other than her friends, the only thing she has going for her is a wicked roundhouse kick and two fists that have been well-trained for combat by her father.

At the other end of the social spectrum is Tristan, the son of the President and a sun dweller.  His mother is gone.  He hates his father.  Backed by only his servant and best friend, Roc, he leaves his lavish lifestyle in the Sun Realm, seeking to make something good out of his troubled life.

When a war breaks out within the Tri-Realms, Tristan is thrust into the middle of a conflict that seems to mysteriously follow Adele as she seeks to find her family and uncover her parents true past.  In their world, someone must die.

Until next time…enjoy the view from your passenger set

One Plus One takes you on a journey

One Plus One by Jojo Moyes is about Jess, a struggling single mother after her husband 18693716Marty leaves.  Jess works hard at trying to pay her bills.  Many times she can’t make her bills, but through it all she stays positive.  Jess’s 10-year-old daughter Tanzie is a math wiz.  She is quirky and everything she sees, she sees in numbers.  She can’t help it.

Nicky is Marty’s son with his ex-wife and neither of them can to take care of Nicky so he ends up with Jess, who raises him like her own.  Nicky is 15, a gamer and he dresses Goth, so he gets picked on by the local bullies, the Fisher brothers.  They pick on him so bad he ends up in the hospital.

Then there is Ed.  A software programmer who just sold his company and gave information to a woman he just wanted to get out of his life.  Sharing this stock information has put Ed into the middle of an insider trading scandal.

Jess cleans Ed’s vacation house and also works at a bar.  While suspended from work, Ed goes to the bar where Jess works.  One night while Ed is totally drunk, Jess takes him home in a taxi and after Ed has been put to bed in his home, Jess finds Ed’s work building access key card and a roll of money.

Tanzi has been invited to a math Olympics in Scotland which if she wins, she would earn $5,000.  This money would help with tuition to a private school.  Jess packs up the kids and the very large dog Norman into Marty’s junky Rolls Royce which breaks down on the side of the road.  As the police are talking with Jess at the side of the road, Ed drives by and stops to help.  He then agrees to drive the family to Scotland since he doesn’t have anything else on his schedule.

During this three day journey (they can’t go over 40 due to Tanzie and her motion sickness), each of them starts to heal from their different wounds.  Ed starts to realize that what he is missing in his life is a family.

I really enjoyed this book.  Jojo knows how to give substance to her characters and knows how to make the reader care for the characters.  You start to hope things work out for all of them and everything becomes right in the world.  Jojo Moyes is becoming one of my favorite authors and this is a book that should not be passed up.

Book description:

Suppose your life sucks.  A lot.  Your husband has done a vanishing act, your teenage stepson is being bullied and your math whiz daughter has a once-in-a-lifetime opportunity that you can’t afford to pay for.  That’s Jess’s life in a nutshell—until an unexpected knight-in-shining-armor offers to rescue them.  Only Jess’s knight turns out to be Geeky Ed, the obnoxious tech millionaire whose vacation home she happens to clean.  But Ed has big problems of his own, and driving the dysfunctional family to the Math Olympiad feels like his first unselfish act in ages . . . maybe ever.

Until next week…enjoy the view from your passenger seat

Royals rule in The Tales of Terrowin

Exile: The Tales of Terrowin by Jerry Canada is about the people of Terrowin.  I’m not sure 23885375when this takes place as carriages, candles and lanterns are used yet some of the people wear bikinis, polo shirts and say ‘yo dude.’

Many years ago, bad things happened in the land of Terrowin so they decided to take the first seven babies born after midnight of every four years to be the “Royals” and those seven will rule Terrowin for four years.  First male born will be the king, first female will be the queen, then there is the protector of the king, the mistress to the king, the lover for the queen, the king’s confidant and an assassin who is either male or female.  The assassin is needed so that no one will want to assassinate the king.  This has been going on for hundreds of years.

This book is about the seven who are now 12 and covers their lives up to their 12th year.  The assassin is a girl named Salil, who is born to a simple couple who have been trying to have a baby for years.  They have experienced multiple miscarriages and have pretty much given up ever having a baby go full term.  They finally have a successful pregnancy and to their disappointment the baby is due December 27 and could be a royal.  When a royal is born, the parents get to enjoy 20 minutes to with the newborn and then have to hand him or her over to be raised at the school for royals.  They never get to have time with the baby again.

The book starts with someone burning down the building where are the royals are sleeping.  Then there is a lot of background description of how the royal system works sprinkled with the lives of the seven who are 12-years-old.  You learn what the kids have to give up in order to be a royal and how they are conditioned for their individual roles.  The seven escape the fire and travel to a land far to the south.  What they don’t know is they are being pursued by the 16-year-old assassin Kass who doesn’t want to leave anyone from the fire alive.

This was a very enjoyable book and can be read in a day.  It’s an interesting take on what could be done to curb violence and political greed.  It shows how the leaders of the country could be manipulated and controlled. With the way this book ended, there will definitely be a next one.  At least there better be because I need to know what happens next.

Book description:

Terrowin is an ancient society like no other.  Its unique monarchy consists of a king, queen, advisor, protector, king’s mistress, queen’s lover and assassin (collectively known as Royals.)  The Birthing Holiday is the grandest celebration in all of Terrowin, when Royals are named every four years according to their birth order on the first day of that New Year.  The Royals are taken from their parents at birth and raised at the Royal Ascension School where they receive the most advanced and sophisticated course of study for the first twenty-four years of their lives.  The king is raised to lead the people.  The assassin, raised to kill him.

A murderous plot destroys the School leaving just seven Royals remaining.  Twelve-year-old Salil, born an assassin, manages to escape along with six other twelve-year-olds: the future King David, Queen Nara, Advisor Cedric, Protector Tem, Mistress Ava and Lover Brandon.  Exiled to a land unknown to them they are pursued by Kass, a ruthless sixteen-year-old assassin out to finish her job.  Their studies incomplete, the Royals struggle with their own identities, roles and loyalties while fleeing Kass.  Salil, raised from birth to be a killer, must now fight for her own survival and try to save the future King David along with the future of Terrowin.

Until next time…enjoy the view from your passenger seat