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.)

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!