Thursday, June 11, 2015

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?


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 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!
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