Thursday, August 29, 2013

Big Bully Parkinson's Disease Picking on More People

Like Linda Ronstadt!...  Seriously?!  How cruel can this stinking Parkinson's Disease be?  Does it really have to go and steal away a voice like Linda Ronstadt's?  Sometimes, it seriously just pisses me off!

What a bully!  Right?!  "Why you gotta be so mean" Parkinson's Disease?  (to use the words of Taylor Swift).  You've already diminished a strong man like Mohammad Ali.  You've robbed Janet Reno of public service.  And you continue to snatch the youth of those like Michael J. Fox AND my "hotthubby" Dan.

Enough already!

Sure. I get it Michael.  This 48-year-old-grey-haired-PD-bloggin-hott-mama-of-four is "Looking Up" from the depths of PD.  I understand.  I get the premise and appreciate the "blessings" that come with a chronic illness like Parkinson's Disease.  Believe me.  My knees know.

But come on already!  This week's news that Linda Ronstadt has Parkinson's too just magnifies the sheer unjustice and utter unfairness of how a chronic neurodegenerative illness sneaks up on a person and robs them of the very thing they hold dear.

Leave it to a bully to target the unsuspecting.  Come on.  Billy Graham!?  Really!  What did he do to deserve being hit by a bully like Parkinson's Disease!

Come on and hurry up Michael J. Fox Foundation and find us a cure!

The alternative stinks!

"Yet those who wait for the LORD Will gain new strength; 
They will mount up with wings like eagles, They will run and not get tired, 
They will walk and not become weary."  Isiah 40:31


Sunday, August 25, 2013

No Moms Allowed!

At the Daddy Daughter Ball!

Last night, First United Methodist Church was the host to an elegant evening designed just for dads and daughters.  From tiny toddlers to adult daughters, dads arrived to a crowd of cameras on the red carpet in suits, tuxes, fancy dresses and ball gowns.  It.was.beautiful!

So, why then was this 48-year-old-grey-haired-PD-blogging-hott-mama-of-four so blue?  Honestly, I had to swallow back the tears before we even left the house.  Please don't tell anyone this, especially Dan, Violet (and Caity), but as they were preparing for the night, this mom had a bit of a panic attack.

What a nerd, right?  Well, after I finally convinced our basketball playing, hurdle jumping, 400 meter running, cross country training 13 year old to put on a nice dress and wear a corsage of daisies on her wrist, a got hit in the head with a ton brick.

Or maybe it was a boulder.  But, while I was brushing my teeth, I panicked.  What if Violet decides she is just too cool to dance?  What if our teeny bopper would rather hang with her pals than dance with her daddy?

What if tonight was the only night the two had this unique opportunity to dance together?

And I don't get a picture?  Enough, right?  But listen to me.  Just the evening before, Dan and I encountered another young adult in our house.  For the first time EVer, Violet asked to be "dropped" at the movies.  Our local "Star" theater became the middle school Friday night place to go - withOUT parents!

Okay.... so the time is coming. I know. I get it. So, why was my heart swelling in my throat and my eyes stinging?  (I tried my best to hide it all.)  Then, today our 23 year old calls the house after seeing the plethora of pictures poudly presented on facebook.  And she says it:

"These girls will LOVE these pictures when they are planning their weddings!"

So.  Save the pictures parents!  Caity is right.  At 23, she has set her date and is deep in the midst of planning her big day when she walks down the aisle to get married.  For now, Violet is 13.  Dad and I may not be the coolest set of parents out there; but, a looooooooong time ago, he took Caity to her Daddy Daughter Dance too.

And, she found the picture to prove it.

"Excuse me, can I tell you something?"  I panicked.  Sorry to be such a desperate sap; but last night's Daddy Daughter Dance was so much more for this mom, and just maybe you too.  This evening, (which required some pretty careful med planning for Dan) once again, made me appreciate this very day, moment, second, that my heavenly Dad gifts us with - a moment in time - to dance with your daddy.

Thank you, dear Father, for the memories made last night at the ball, and I pray that my girls will get to dance with their daddy at their weddings too.

In the meantime, I have another picture to prove it!  (Thanks Luke!)

Friday, August 23, 2013

Tomorrow is the Daddy Daughter Ball

Yesterday, it was 1996.

A much younger Dan and our "baby" girl Caity are headed to the Brownie's Daddy/Daughter Dance as they practice moves in the kitchen.  Just look at them?!  (Dan's hair is soooo dark!)

Tomorrow, First United Methodist Church is hosting its' premiere Daddy Daughter Ball!  Dads and daughters of all ages will descend on an elegantly decorated "ballroom" filled with cupcakes, a candy bar, a red carpet photo op, and finally... a night families will never forget.

All planned by the dads!  As moms hide in the bushes to sneak snapshots, our Violet will get an entire two hours with her daddy.

With two younger brothers, that doesn't happen every day.  But for one night only, it's just Dan and Violet, where she is his princess for the night.

And he is her knight in shining armor.  Designed for dads to honor their baby girls (and vice verse), affirming their love, the Daddy Daughter Ball is a chance to not just remind but glorify our girls of their worth, beauty, importance, and value -- also from a Father in heaven.

They are not only daddy's little girl; they are also...

... a princess of a King!

"And if children, then heirs; heirs of God, and joint-heirs with Christ;..., 
that we may also be glorified together!"  Romans 8:17-19

Wednesday, August 21, 2013

How a Bracelet Helps Parkinson's Disease Symptoms When Meds Don't

Diagnosis of Parkinson's Disease depends "upon the presence of one or more of the four most common motor symptoms of the disease."  These primary motor symptoms include a resting tremor, brandykinesia, rigidity, and postural instability.  Medications  to treat these symptoms involve a dopamine replacement therapy with levodopa/carbidopa.  In addition to all the medical treatments, even DBS (Deep Brain Stimulation), I recently was introduced to a unique and simple little "thing"... yes, it's a bracelet!

In Honor of my Mother here is our Survival Paracord Parkinson's braceletAlthough this bright paracord bracelet doesn't have the capabilities to generate dopamine, it does something equally as important:  It sparks a candle in your spirit that will light up the difficult days when Parkinson's Disease seems to get the best of you.  It let's me know that there is someone out there that keeps studying this crazy stinking illness.  The orange Survival Paracord Parkinson's Bracelet stands for this:


Hope for people with Parkinson's.  Hope for organizations like the Michael J. Fox Foundation and the National Parkinson's Foundation that raise money for research; hope for the caring specialists, neurologists, and nurses that treat patients; hope for caregivers to better understand; and... finally, as I see it, hope to seek God's grace during the most difficult struggles as the symptoms progress.

For those days, and there may be many, when the meds just don't seem to do the trick, this little Parkinson's Bracelet symbolizes my prayer for God to wrap himself around this awful illness.  With the MJF Foundation's signature "orange" color, I found the white paracord represents all that ties us together in the Parkinson's (or any) community:  a God that offers us hope in the darkest days, woven around the orange.

Delighted to open my mail yesterday to see a package from Sandy at Jewels for Hope makes me realize just how much I have grown to love the cool "Parkie Pals" I have met by sharing stories with you here on "Excuse me, can I tell you something?"  From the artist Shasha in Wales, Fiona in Ireland, to dear Linda in Florida and writer, Daniel in Minnesota, living with Parkinson's Disease isn't so crazy when I can fire up the laptop and find someone who understands at my fingertips...

and wrapped around my skinny ole freckled wrist!

You know what?  I may never meet Michael J. Fox, Muhammad Ali, or Diane Rehm (I just LOVE her hair!), but this 48-year-old-grey-haired-PD bloggin'-hott-mama-of-four is grateful to all I've met and shared stories online.  Thank you all for inviting me on your computers for a short time to share my

hope.  "Where then is my hope?  Who can see any hope for me?"  Job 17:15

I now see hope on my wrist as I wear my  new bracelet!  Thank you Sandy!

Monday, August 19, 2013

Today My Son Moved Out

...of his little brother's room.

...across the hall!

He's 9.  And tomorrow will be the first day of fifth grade.  This afternoon, our son made a random announcement, "I want to move!... To my own room!"

Really?  Ok... so as I wonder where the fear of noises in the night and of the sound of wind went that prompted him to share a room with his brother 15 months younger, I begin to calculate  how to coordinate such a move with not just clothes, but also all his worldly belongings.

To my surprise, he tells me he really only needs his laptop, earphones, and of course, his Yamaha Keyboard.   Duh Mom!  Right?

Okay.  I know.  So he hasn't technically moved "out of the house" yet.  Sure, we've been through this already with his older sister, now 23 and living on her own.  But as we said our prayers at bedtime this evening in his "new" room, he chatters away about how excited he is to meet  his new teacher, how grown up he feels as a fifth grader, how much he loves his new Minecraft tee shirt from Kohl's,... I am picturing my two little boys that only hours ago shared a bedroom.

The endless hours of Beyblades, clutter of all things boys everywhere, piles of dirty underwear, jumping beds across the room, giggles about fart jokes, episodes of TMNT, and the hysterical nightly naked butt shaking.

From my child that once told us that he planned to go to college online in order to enjoy the comforts of home, kinda makes me wonder what to expect next.  Do you know what I mean?  As moms, we will get all kinds of calls/texts from our children.  Don't we?  Whether it is "Mom! I got all A's," "Mom, I got my best running time!" "Mom, can Ben sleep over?"...  or...  when it gradually becomes...  "Mom!  I met a girl!" "Mom, we finally set a date!"  "Mom... my boyfriend crashed my car.  We're ok!"  "Mom... can you pick me up early?"  to, eventually things like "Mom... I joined the military; I'm moving to Chicago; I need a loan; I'm pregnant..."

It all starts with a move across the hall.

"Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths."  Proverbs 3:5-6

Wednesday, August 14, 2013

A Review of "Not Of This World" by Lisa Chan from this 48-Year-Old-Grey-Haired-Hott-Mama-of-Four

Lisa Chan, wife of Frances Chan (author of one of my favorite books, Crazy Love), returns for the third installment of her True Beauty Films, "Not of This World".  

Following "Be Still" and "Deny Yourself", this final video "invites women into an authentic conversation about God's Word."  Lisa weaves her teaching with scripture intertwined with the real life story of another woman's hardships and struggles.

Here is what I liked about "Not of This World":
* Practical Scripture - Lisa beautifully backs up every point she makes with Biblical scripture.  She offers key points from His word to encourage us to live a life in Christ.

*  Personal Reflection Guide - "Not of This World" offers a unique booklet with scripture and thought provoking questions.  It is eye catching and artistic in its' presention; leaving room for personal input and reflection.

*  Personal Story - An incarcerated husband, a mom reveals her path from the depths of sin to salvation.  Lisa melts the story of a young mother with a toddler and, while nine months pregnant, encounters loud knocks as the police take away her husband.  Be sure to watch the "Back Story," which puts it all together.

"Not of This World" is beautiful.  It is eloquent, artistic, and clever; filled with warmth and emotion, providing a direct connection to the love of Jesus.  The answers are all there.  So, why have I been edgy all day after viewing Lisa's final "True Beauty" film?

Here's what I think happened.  You see, when you watch "Not of This World" as well as Lisa Chan's other films, you will see beautiful people in lovely surroundings.  The moms, no matter what struggles they encountered, are dressed to the hilt in perfect hair and make-up, in neat organized surroundings or striking outdoor settings.

Since I am human, what do I do?  Well.... I start comparing.  Like in the title, I am a barely five feet tall, freckled-faced, five pounds heavier, chaotic household, Parkinson's blogging, 48-year-old-grey-haired-(not-so)-hott-mama-of-four!  I haven't experienced incarceration, abuse, or poverty.  I am stuck in this world with school shopping, sports activities, piano lessons, grocery shopping.  Where, exactly, can I relate to Lisa's "True Beauty" series?  Tell me.

Then it struck me.  God thinks I am beautiful.

Interested?  Just let me know and I will include you in a drawing for a free copy of "Not of This World" from David C. Cook or click here to purchase your copy.

Monday, August 5, 2013

A Review of PARKINSON'S CENTRAL - A Smartphone App for Parkinson's Disease

Not long ago, I learned that the National Parkinson Foundation was releasing an app for Parkinson's Disease.  "Seriously?" I thought..., "There's an app for that?"  Diagnosed five years ago with a young family, we discovered that my "hott-hubby" Dan would have to live with this neuro-degenerative disease for which there is no cure.

I have to admit that this whole world of smartphone apps somewhat mystifies me; so, how can the National Parkinson Foundation come up with something that can really help people with Parkinson's?  This 48-year-old-grey-haired-Hott-mama-of-four has troubles operating my Samsung Galaxy Note much less loading AND using an app for Parkinson's Disease.

"PD" belongs to a group of conditions called motor system disorders, which are the result of the loss of dopamine-producing brain cells.  Symptoms include tremor, rigidity, or stiffness of the limbs, brandykinesia (slowness of movement) and impaired balance. As these symptoms become more pronounced, patients may have difficulty walking, talking, or completing other simple tasks, according to the National Institute of Health.  Considering the physical challenges of PD, how will patients be able to successfully operate a new smartphone app?

Not only that, but what about the technically challenged healthy folks out there like me!?  My kids (ages 8 - 23) taught me that there is an app for just about everything!  For example, when we visited Universal Studios, they all had apps to learn the wait times for everything from roller-coaster rides, the Minion Mayhem, to Hogwarts!  When I recently ventured to a One Direction concert with Violet, our 13 year old daughter, Caity, now 23, loaded an app on my phone to help us maneuver around the metro in Washington, DC.  I have even seen her use her smartphone app to by coffee at Starbucks.  Golly!

So, after Violet loaded PARKINSON'S CENTRAL, "a free, easy-to-use smartphone app that people with Parkinson's and their caregivers can use to access Parkinson's-related information wherever and whenever they need it", I began a journey of discovery on new telemedical adventure.  Here's what I learned:

*  It's is NOT hard to use!  Once I overcame my clumsiness with something new, I found myself breezing through the tabs on PARKINSON'S CENTRAL and learning useful tips for both patients and caregivers!

*  The format design is colorful and creative!  You know, there is so much information available online these days that sometimes it all seems to be one big mumble-jumble for me.  PARKINSON'S CENTRAL is cleverly designed with eye-catching tabs that effortlessly steer you around the app.

*  The information is current and applicable!  Whether you are recently diagnosed or have been living with this crazy chronic illness for years, PARKINSON'S CENTRAL introduces relevant and informative medical advice for patients at ALL stages of PD.

In conclusion, I know you must be thinking it.  Go on and admit it!  I was.  So hear goes:  How exactly does the National Parkinson's Foundation expect patients, with tremors and other physical challenges, to operate this new app, PARKINSON'S CENTRAL?  Manipulating their way around a hand held smart phone is sure to be a difficult task for many patients with PD, especially those who can sometimes find it difficult to button a blouse or buckle a belt.  Hopefully, a PD patient will find this new app available when their meds are "on" or a patient caregiver nearby.

Hummmmmm....  maybe someday a true smartphone will project an app that won't require specific hand/eye coordination.  Wouldn't that be cool? Rather than requiring a PD patient to use a shaking finger to drive around the PARKINSON'S CENTRAL app, maybe some sort of phone projection could easily be swiped in the air, somewhat like you see in the crime lab at Hawaii 5-0.  Hey, and while I'm at it, what about a sensor that will recognize the soft spoken Parkie out there?  Maybe someday our iPhones will have Nurse Siri to "tune" into the questions and difficult speech patterns of PD patients.

If my kid's Kinnect game can see them play games, judge performance, or race Mario with kids around the world, could a smartphone app detect a PD patients severity of symptoms, medical needs, tremors, weakened muscles, stiff limbs, shuffled gait, physical challenges, soft voice?  If Wii Fit can challenge ones balance skills in Yoga, why not?!  Imagine technology where a PWP can stand in front of a monitor in a remote location like the West Virginia hills and be examined by a neurologist around the world.  Kinda reminds me of Kinnect's DANCE CENTRAL of today becoming the PARKINSON'S CENTRAL of tomorrow.

But, that's for another time, I guess.

Until then, give your PARKINSON'S CENTRAL app a try and let me know what you think!

A Video Birthday Card

Sunday, August 4, 2013

What Makes Me Proud?

Violet, our 13 year old daughter, and her friend Stephanie do!  Here are two teenagers who had a blast at The Amazing Race for Jenna's Joy Foundation yesterday AND raised money to help children with invisible illnesses.  A rainy, wet, day turned to a memorable event as The Algebros, the youngest of 12 teams came home with a third place win for all their hard work.

It was fun watching their teamwork as they met many challenges in The Amazing Race.  I'm sure these two are up to many more!  Teams earned points for costumes, facebook fan pages, routines, and meeting physical and mental challenges which cleverly incorporated the history and community of Berkeley Springs!

Here are "the fans" and even Ozzie came to cheer! Thanks to everyone for all your help coming out to support children with illness AND the Algebros.  It truely is nice to see how our local businesses also came together, even the Martinsburg Journal featured highlights of the amazing fun!

I am proud of these gals AND to be a part of a community that cares!  How about you?  For children (and adults) with invisible illness, each day can feel like a race.  Please continue to pray for them all!

"Let us run with endurance the race that God has set before us"  Hebrews 12:1.