A Caregiver's Review of "CARING AND COPING: A Caregiver's Guide to Parkinson's Disease"

Yes, that's me...finally reading CARING AND COPING,
A Caregiver's Guide to Parkinson's Disease

A Caregiver's Review of CARING AND COPING:  A Caregiver's Guide to Parkinson's Disease

Books do NOT sit around my house.  No, no, no!  When a new book comes through the door of our log house nestled here in the hills of West Virginia, there is never time for a speck of dust to collect on its cover.  New books just don't get a break around here!  It's like, the second we bring them home, they are circulated around the many readers, stuffed in back packs, carried to cars for road trips, or lounging with someone out by the pool.  A new book is a little like a batch of cookies:  it disappears quickly!

So then, why did CARING AND COPING: A Caregiver's Guide to Parkinson's Disease find itself shuffled around my house?  Nearly two weeks following the arrival in our rural box half a mile away, this free resource offered by the National Parkinson's Foundation just got ignored.  It sat there, all alone.  I just could not bring myself to crack it open and read this "comprehensive guide for caregivers of people with Parkinson's at any stage."

Yes, at any STAGE, it says plainly in the description.  However, what it failed to communicate to me was at any AGE!

With just a quick glance, between the covers of CARING AND COPING:  A Caregiver's Guide to Parkinson's Disease, I found that all, and I mean ALL the PWP (People with Parkinson's) were way older than my PWP!  Packed full of Senior Citizen images, and not to belittle their needs or diminish the severity of their disease, (after all, the National Parkinson's Foundation says that "the average age of PD diagnosis is around 62) this 49 year-old-grey-haired-PD-bloggin-hott-mama-of-four was just way too young to find any need for what it had to tell me!  I may have turned white earlier than most, but I was not ready to include my hubby of 18 years with those in their 80's.

So, there it sat.  And sat...

...and sat.

My PWP.  My adorable hott-hubby Dan was diagnosed at barely 50.  At the time, our youngest were just 2 and 3 years old.  When I finally swept the dust of the cover and picked up my workbook with tips and tools for my Parkinson's caregiving journey, I looked everywhere for young families like mine.  Did I find them?

No.

But here is what I did find.  And it is simple.  And I needed to hear it.

CARING AND COPING:  A Caregive's Guide to Parkinson's Disease "focuses on your dual role as a caregiver:  caring for someone with Parkinson's disease, and taking care of yourself."

Now, that is just something I don't have time for....at all!  Taking care of me?  No, there is just too much to do!  What, with four busy children, three are in three different schools!  So...with activities ranging from elementary school carnivals and tattooing all 400 children in grades three - five; middle school track meets and band concerts; high school running events; final exams; field trips and churro making for tomorrow's Spanish class, how I am supposed to take care of me?

So, I began to read.  CARING AND COPING comes with not just all there is to know about Parkinson's Disease.  In fact, in my journey with PD, I have read much of it already.  But what is nice is that the dear people from NPF have managed to contain not information on PD stages but a wealth of information for me to consider as Dan's symptoms progress, and as much as I attempt to deny it, they will progress.  So, how do I prepare for this?

I have my workbook, CARING AND COPING:  A Caregiver's guide to PD!  Packed with practical pointers from organizing medical information, understanding symptoms, to getting outside help, there are even worksheets to help caregivers organize meds and monitor symptoms.  I can remain in my sea of "denial" all I want, but the fact remains that unless Parkinson's is cured sometime soon, I will slowly watch Dan and I evolve into just the people pictured in this book.

And that scares me.

So...what do I do?  How do we caregivers "cope" with watching our loved ones battle with this stinking illness.  Sure, with adequate meds carefully timed, life almost seems...well,...normal.  But how is living with painful muscle cramps, rigidity, slowness, fatigue, freezing, or even the "mask" normal?  Early disability from a thriving career in your early 50's is not normal.

It's not.  Plain and simple.  So, what do we do?  We read resources like CARING AND COPING.  And, well,... we pray.

Yes, we pray.  And we get involved in an organized national effort which brings not only hope for a cure but encourages engagement and participation with other caregivers all over the world. Get over the denial, start getting involved, and read this book...finally.

And I finally listened to another mom (thanks Tally!) who told me I needed to do something for myself, anything... like start running maybe.  Just do it, and little did I know then, but it will be easier to start now, before we are in our golden years and overcome by PD.   Although it took me years to try it and 4 months to train, I just did my first virtual 10K on National Running Day, June 3rd.  Joined by some crazy friends, we ran the C & O Canal to beat Parkinson's Disease.  It sure wasn't Miami...but it was just as much fun!

Are YOU a caregiver?  Find something to do that YOU like and
start reading CARING AND COPING.
What are you waiting for?  Just do it...NOW!

I Saw Robin Williams at Church This Sunday

Maybe someone should have warned Pastor Stan.  He IS new after all!  Barely on assignment here in rural West Virginia for a month and Robin Williams shows up at his service.  As our contemporary band closes their set of songs for the beginning of church, the congregation closes their eyes and lowers their heads for the morning prayer.  As I join in prayer, I find myself lowering my head.  Please don't tell the new pastor, but my eyes were open and, well honestly, I wasn't listening to the prayer.  Not at all.

As I stared at the floor with a heavy heart from the week's happenings, still confused about the suicide of the world-loved comedian Robin Williams, rolling out from under the chair next to me came something unexpected.  Ours is a service that happens in a bit of an unconventional setting.  My family was sitting house center under a basketball net.  Scattered around is evidence of a vibrant youth community.  Well, it's a bit of a mess; but it feels like home.

So as I sat there, quietly (which is really hard for me), praying... I notice something small rolling across the floor and stops just shy of my left sneaker.  It is a little red ball.

As I bend down to pick it up and hold it in my hand, from this little red ball emerges a blanket of comfort.  And yes, even at church (and during prayer), I am blessed with a smile across my face.

It really is a good thing no one was looking.  Because just then I looked up to God with Robin's red ball in my hand as a small tear of relief rolled out.  "There you are."  I saw Robin Williams at church this morning.

Before you find me delusional for the blog title "I Saw Robin Williams at Church This Sunday!", please bear with me.  Dan (my hotthubby) may argue that I do manage to miss many major news events, the recent alarming press of the suicide of world beloved actor Robin Williams did, indeed and sadly, not miss my radar.

How could it?

Every reporter and columnist across the globe shared Robin's sad and shocking story of suicide. After reading everything from Matt Walsh to listening to facebook tributes, I struggled with the confusion and wonder too, just like the rest of you.  My Netflix que now has every Robin Williams movie I could find.  I just did not want to let him go.

Although it is hard to imagine, my heart was even heavier two days after Robin's death when it was released that he was recently diagnosed with Parkinson's Disease.

Parkinson's Disease, or "PD", is a chronic and progressive movement disorder for which there is no cure.  Many of the visible symptoms include tremor, slowness, stiffness, and impaired balance issues. Additionally, the non-motor issues that arise from the brain's inability to produce a chemical called dopamine, can cause a patients loss of smell, sleep disorders, as well as mood disorders.  Finally, depression is an invisible element of this already debilitating disease on top of it all; yet, quite prevalent for dear Robin.

Depression.   I found myself rather irritated that people seemed to almost justify Robin's suicide with the news of his recent diagnosis of Parkinson's.  Or, maybe they were just holding on to an answer, I don't know.  But for me, I was pissed at the seemingly "now his suicide makes sense".  No...  suicide never makes sense, but you know what?  Neither does Parkinson's Disease!  Pardon my bluntness, but I've said it before, Parkinson's "sucks."  You see, although you can not see a visible tremor, PD hurts in other ways. I guess it was the invisible symptoms Robin suffered that took us all by surprise.  Even David Letterman said, "Beyond being a very talented man and a good friend and a gentleman, I am sorry I-like everybody else-had no idea that the man was in pain and that the man was suffering."

But, then I actually discovered my fear.  And this is really hard to share with you.  For you see, Susan Schneider (Robin's wife) and I share something in common as well as Diane Rehm, of NPR, who recently lost her husband after a long battle with PD.  In fact, her husband John didn't want to live another day. Our husbands all have Parkinson's.

Suddenly, I was scared.  Depression comes as a partner to Parkinson's just as I am married to it as well.  If these famous women suffered the loss of their loved husbands, what does that mean for me? Although, my husband is not depressed, he remains involved and participates with depression research through the Michael J. Fox Foundation at Johns Hopkins Hospital in Baltimore. Would he ever reach this point in his disease?  God, I hope not.

And if so, where would he spend eternity?  Are there people in heaven who took their own lives by suicide?  Not to sound crazy, but I was worried where Robin Williams was spending eternity.  How could a man, who played Patch Adams (the humorous and whimical physician) with such talent to make me laugh one second and cry the next spend eternity in any place other than the loving hands of his creator, God?

Is suicide an "unforgivable sin"?  No... at least I don't believe it to be.  After investigating this extensively, I stumbled across a site with none other than that red ball again (ask.com).  What does the Bible say?  "The Bible tells us that at the moment of salvation, a believer's sins are forgiven (John 3:16; 10:28). When we become a child of God, all of our sins, even those committed after salvation, are no longer held against us."

It goes on to say that in Ephesians 2:8,

"God saved you by his grace when you believed.  

And you can't take credit for this; it is a gift from God."  

So, we are saved by God's grace, not by our own good deeds.  In the same way that our good works don't save us, our bad ones, or sins, cannot keep us from salvation" when we believe. Robin believed, and so does Dan.

Then I saw the red ball roll next to me and I knew exactly where Robin was.

Technology, Toddlers, and PD

"Technology, technology everywhere.  Everywhere you look!"

As April rolls around once again to another month of Parkinson's Awareness, I love to celebrate!  Plain and simple, give me the tiniest accomplishment from first freckles, lost teeth, to MBA's and grad degrees, I'm popping champaign!  Bring on the big stuff, and don't hold me back because you'll find two bottles of bubbly.  Celebrate Parkinson's?  Why not!  Sure beats being bummed out about it.  Instead, I chose to recognize the blessings in PD's little gifts like another family sunset or late weekend mornings watching tv.  This year, this 48-year-old-grey-haired-PD blogging-hott-mama-of-four is even celebrating technology and Parkinson's.

Technology...me?  Well, yes.  You see, some how I have managed to find myself living in 2014 in this crazy house full of techno gurus!  Where did they all come from? 

Just look at our boys!  (But don't you dare tell them I showed you this picture!)  Fresh out of the tub, the Hott brothers just 2 and 3 years old, are cruising the internet on their own laptop provided by my hotthubby, Dan.  (Of course, look past those bare bootys to what is on the table...a computer.)

At an early age, Dan realized the importance of emersing our family in the latest in technology.  We have more laptops, gadgets, and game counsels in our house than technology in southern California!  Before long, I expect to see both boys and Dan wearing Google Glass around the house.  (At least they will be wearing something!)

Honestly though, this picture of Isaac and Levi online is one of my favorites.  Good thing we don't have neighbors out here in the hills.  Someone tell these kids to please put some clothes on. 

Now...about eight years later, check out Isaac (now 10) and his daddy, Dan.  Pictured here are my true techno boys building their own computer.  Yes, from laptops to a custom built gaming computer, Isaac researched and selected the parts to create a custom machine all his own.  Oooooh, just a small project for another snowy day at the Hott house.

Yeah, right.  But the funny thing is, as the mom in the house, all this technology stuff is like a foreign language to me.  So, when the National Parkinson's Foundation called me a few months ago to talk about Parkinson's Disease and technology, I kinda had to giggle.  Me?  Technology?! 

Does technology help my family deal with living with Parkinson's?  Well, once I get past the mystery of how this keypad transfers my thoughts to your screen and beyond, I had to answer, "yes," it does!  I may never get excited about giga-thingys and mega-pixels like Isaac and Dan; but, I honestly do rely on technology to connect me to others and keep me apprised of what's happening with this stinking disease.

So much so, that for Parkinson's Awareness Month, I think it was kinda cool that this interview on page four of the Parkinson Report features my thoughts on technology and Parkinson's Disease.  I may not be able to load my own PD app on my smart phone, but I do connect with others and express what it is like to be a PD partner through the use of technology.

Even "cooler" is the great people I have met all over the world along this PD journey through technology.  I will never have the millions needed for research to fix it, but "Excuse me, can I tell you something?"... with continued prayers and support from our friends, technology really does make it tolerable by keeping us connected and informed.

National Parkinson Foundation Links My PD App Review!

Parkinson's Today is a monthly e-newsletter from the National Parkinson's Foundation.  In the September 2013 edition,  the National Parkinson Foundation links a review I posted earlier this summer about their new smartphone app called PARKINSONS CENTRAL.

Needless to say, I'm a little tickled to see this 48-year-old-grey-haried-PD bloggin-hott-mama-of four's post linked on a national publication... especially NPF!  I first learned of this foundation 5 years ago.  We were at Johns Hopkins Medical Center in Baltimore, MD, where Dan (my hotthubby who has PD) participates in a research program.

Since then, I blog stories about living with PD in the Hott House and raising a dynamic family of four (and sometimes more!).  Recently, a reader commented that "Your blog touched me Angie!  Faith, a Positive Attitude, Exercise, and a Strong Family is the 'secret' to beating Parkinson's Disease!  You guys have it all!!!"  

Secret?  Dan always tells me I can't keep a secret.

This time he is right!  ;-)

(To see the e-newsletter, click Parkinson's Today.)

Team Fox Superstar Emerges

"It's not about how fast you run but how you run fast!"

Have you heard this?  Well, actually... maybe not.  You see, in Disney's movie "Planes" they tell Dusty that "it's not how fast you FLY but how you fly FAST!"  LOL!

Check out our new Team Fox Superstar!  Levi Hott, age 8, finished third in his age group at the Morgan County Partnership's  "Run for Recovery 5K" on Sept. 14, 2013.   Who knew he could run fast?  And who knows?...maybe he'll become a marathon runner for Team Fox someday and raise lots of money for Parkinson's Disease research.

Wouldn't that be a cool way to contribute to the cause to find a cure for PD in our lifetime?  It was quite by accident, by the way, that Levi chose to wear his "Team Fox" racing shirt.  But it was no accident that all six Hott's participated in another 5K.

This week, Dan had his five year appointment at Johns Hopkins Hospital where he has been a part of a research program for Parkinson's Disease.  His neurologist, Dr. Zoltan Mari, was wearing a button with the Michael J. Fox Foundation's logo and a phrase "ask me about PD research".

So... I asked!  Wow....  Dr. Mari's enthusiasm was encouraging and hopeful that all their work will lead to progress in finding ways to help those living with this stinking illness.  Most of all, we talked a great deal about the importance of exercise.  With four active kids and busy schedules, it is hard not to keep Dan active.

Dr. Mari told us that "they believe that exercise may slow down or improve the symptoms of Parkinson's Disease" (well... he said something like that!).

Oh yeah!  So... exercise is the secret to beating Parkinson's Disease?  Well, let's get busy, off our butts, and exercise!  Come on!

Actually, Dan stretches and walks quite a bit.  In fact, we often find that when people see Dan they always say "Wow Dan!  You look great!"  I guess what they mean is "...for a 56 year old with Parkinson's Disease."  Well, fact is, he does look great!  (Pretty "hott" actually!)  And with well timed meds like levodopa it is hard to tell he has a chronic neurological problem at all.

An exercise program to help with Parkinson's Symptoms?  Sign us up!  Or, at least sign us up for a local 5K for a fun, family night out!  Makes this 48-year-old-grey-haired-PD bloggin-hott-mama-of-four remember our family's first attempt at running a 5K.  It was 2011 when I signed up my reluctant crew to run at the Morgan County Fair, one of the many days my hotthubby Dan shone as our PD "Superstar".

But move over, Dan!  There are new stars in the house!  LOL!  And, these stars never have to finish first to show how much heart and soul they bring to our crazy race.

I'm proud of our stars every day.

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!

Although 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.

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!

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!