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 Support the North Berkeley Rail Trail

Do you?  Because if you happen to find the benefits of a community walking/running trail for Morgan County, we need to let our commissioners know before small town politics reject a well conceived concept for the health, wellness, and safety of our citizens of ALL ages.  In order to "Save the North Berkeley Rail Trail" please contact all our county commissioners and, if possible, attend their next meeting on January 22nd, at 9:30 a.m. (Contact info to follow so keep reading.)

Excuse me?  Can I tell you why the news that Ford wants to pull the plug on North Berkeley Rail Trail was so upsetting to this soon-to-be-50-grey-haired-hott-mama-of-four?  I read the article from the Morgan Messenger as it was released late Thursday afternoon.  We were on our way to Ruby Tuesdays to celebrate the 20 year anniversary of our first blind date.  Back to school after a snow break, our 14 year old freshman cross country runner is chatting away in the car about her trip to the Morgan County Courthouse with the team.  Imagine my surprise as I realized she was present at the very meeting reported in the paper.

I found it alarming that our BSHS Cross Country team state CHAMPIONS had to witnesss the discussion to possibly reject a running/walking trail by our county commissioners.  From a town that harbors a winning running program recognized state wide and no adults in the room realize or notices that the county commissioners are discussing cutting a trail project that could benefit the very future voters present in the room.  As a parent of a runner, I found this to be in poor taste, setting a terrible example for our children; not to mention belittling the very effort and hard work these students exhibit by their dedication to a sport which provides them beneficial life-long learning.

Later, I read on facebook:  "As someone mentioned in a whisper at this meeting: 'why don't they just say they want to kill it because it was Stacy's project. At least we'd respect them.'" Well, our children heard what happened because as they left the meeting, a teenager whispered, "I kinda wish we had a trail like that to run on."

So do I!  This parent of a runner, and with a large family that frequently runs and bikes together, I also wish they had a safe trail off the busy curvy roads to run and for practice.  It sounds to me like it would honor a team of Champions and provide a valuable resource for our community and not just our tourists, making an asset for people already living here; and a reason for people to stay.

Trails are provided for communities all over the country!  I was so surprised to read that the commissioners felt this was "ill conceived from the start."  According to the article, "'it's my belief that it was an ill-conceived project from the word go,' said Ford. 'I've asked what the purpose is of the project and I've never got a clear answer.'"

Purpose of a walking/running trail?  Seriously?   Commissioner Ford had plenty of runners in the room that could have helped him figure out the "purpose of the project."  As a resident of Morgan County, I find it offensive not only that this was part of the meeting while the team was present but that it was chided about tourists utilizing the trail. What about families?  What about seniors?  Where has Ford been?  Ask anyone around town where the teams run.  They are everywhere during training AND after: out New Hope Road, on Hospital Hill, along Route 13.  Hard not to miss them.  What is the purpose of the trail?  Well, for walking and running!  Communities all over the country build trails to promote healthy living.  Kinda fits our little spa town, doesn't it?

In fact, my own family often drives over to Hancock to bike or run the rail trail.  It is always an adventure and the kids love it!  We always tie in the 30 minute drive there with a treat which normally includes picking up a pie at Blue Goose, lunch at Weavers, the Farmer's Market on Thursdays, or just a trip to Pittmans (for Levi's Lender's onion bagels which aren't available in Food Lion).  Hmmmm... sounds like plenty of good reasons for a trail in Morgan County.

And you know what?  Not all of Hancock's trail is scenic.  In fact, who wants to walk parallel along noisy Interstate 70?  And, why would a North Berkeley Rail Trail be called a "trail to no where"?  It seems like the Senior Center and Towne of Bath are both pretty cool destinations, right?

I was told in defense of the meeting, that the girls were later than expected because of the school delay; hence they witnessed the trail debate.  Sorry, but this mom feels that is no excuse for adults to allow this debacle in front of children.  Did no one recognize the complete irony of it all?  It so sets a poor example of our local government when it could have been tabled until after the team was honored.  Now what must they be thinking?  Work hard and achieve a success only to come home and hear an elected official question the purpose of a community trail.

I will apologize for my rant here and, honestly, I mean no disrespect.  Forgive me for expecting more from the adults we have elected to govern our county we call home.  Quite frankly, this voter feels that our commissioners owe these children and their coaches an apology for overlooking the craziness of debunking a rail trail with them present.  The behavior of adults, especially elected officials, are watched under a microscope.  Come on.  These kids were invited to be recongized for achievement of being Number One in West Virginia - for running!  Why can't we have a safe place for them to train and continue to produce champion athletes?

Why can't we provide seniors with a trail for exercise?  Why can't we provide families with healthy alternatives locally?  Why can't we respect each other more at a public meeting?

So, please support the North Berkeley Rail Trail.  Come to the Jan. 22nd meeting.  Tell ALL our county commissioners to continue this very well conceived concept for our community and figure out the funding and most reasonable engineering to make this happen. Here is their contact information.

Morgan County Commission Office:  304-258-8540
Commissioner Bradley J. Close, President, email bclose@morgancountywv.gov
Commissioner Robert L. Ford, email bford@morgancountywv.gov
Commissioner Joel R. Tutte, email jtuttle@morgancountywv.gov

"Arise, walk about the land through its length and breadth; for I will give it to you." 

Genesis 13:17

Run With Rene at "Fall for Fitness" 5K

"Fall for Fitness" 5K and Fun Run, a benefit for the BSHS Cross Country Team, is a new event taking place November 16th in Berkeley Springs, WV. Organizers have created a fun family fitness day filled with activities from a 5K Run, a family 1 mile fun run, free post race DJ Dance Party, and a free family walking tour of historic Berkeley Springs!

A very special "Fall for Fitness" co-host will appear with emcee and Dance DJ Ken Reed, owner of Reed's Pharmacy and candidate for US Congress!  Recently suffering a tragic, death defying, car accident, local fitness instructor Rene Garcia-Kesecker will be the guest of honor to recognize fitness in our community and award medals to the top three of age groups.  "Run with Renee" at "Fall for Fitness" coming Nov. 16 and inspire your community to be fit!

Meet Rene.

Rene Garcia-Kesecker.

Always an incurable optimist and possessing a powerful positive attitude, Rene greets everyone she sees with that electric movie star smile and a "Hey you!"  Regardless of how busy her day is, Rene is one of those rare fitness moms that makes time for a hello and a hug.

Busy?  Yes, that's Rene!  With her oldest a freshman at WVU, a daughter in high school, and another fifth grade dancing doll, this busy mom's activities keep her fit as a fiddle as she hustles from high school thespian productions, dance recitals, lessons, and extended family events.  Add to Rene's plate her fitness expertise as the community "zin master" on all things Zumba, a combination of Latin and International music with a fun and effective dance workout, one can find Rene teaching at Rankins Fitness Center or MAC Ice House.

Meet Rene.

It is never a dull day when attending "Zumba with Rene"... or, watching her participate in one of the only four major sports created in America.  No, it's not basketball, American football, or baseball. Try Roller Derby!

Meet Rene.  

A member of the Mason Dixon Roller Vixens, a women's flat track roller derby league, "Rene -K47" knows for certain the meaning of "rock-n-roll" as she enjoys competitive and focused sports devoted to community service, good sportsmanship, physical fitness, and the "left turns" of sweet, sweet Roller Derby!

Meet Rene.  

She was recently heading to help teach a Zumbathon in Hagerstown, MD, when Rene took a turn on a wet road while driving her family car after a late summer shower on a hot September afternoon. The local media soon reported "Woman Taken to Hospital After Driving into Tree" and facebook exploded with concern for a beloved mom in this small community.  We saw this:

Really?...  Rene?  Dear God, please rescue Rene from this tragic accident, love her family, heal her body, ease her pain.

Posts online reported that she suffered a broken collar bone, broken pelvis, and broken ribs.  How's a thrice broken pelvis going to do salsa and merengue at her next Zumba class?  How Rene managed to survive such an awful accident continues to shake this small town.

Morgan County is a rural community.  Although it seems we often hear nothing but the negative news; i.e, failed levy, struggling schools, drug abuse, obesity, child hunger,... in the midst of what often seems a crazy, mixed-up world, we all stopped for a moment to remember our beautiful, smiling, warm-hearted, dancing Rene.

Now, meet Rene...

Still healing, (and smiling) it will take more than a car crash to stop this 45 year-old-roller-derby-mom-of-three!  Barely a month following her horrible accident, Rene can be seen here cheering folks in the local parade at the Apple Butter Festival Oct 12th.  Seeing her at the festival made.my.day!...and others too.

Why? Because a terrible accident has not stopped Rene.  Nope.  Out on a rainy weekend surrounded by her entire family, Rene returns to all things fun and fit.  With determination and a positive approach to her healing, Rene will soon be back in her Zumba class or making those left turns on the Derby Rink!

In fact, the Berkeley Springs community is pleased to have Rene join them as the guest of honor for the first annual "Fall for Fitness" 5K. As honorary officiate of the event, Rene will be presenting runner's awards and presiding over the event to benefit the Berkeley Springs High School Cross Country team!  On Saturday, November 16th at 10 a.m., family and friends will gather at Warm Springs Middle School to show support for a community fitness celebration for the "Fall for Fitness" 5K.

Following the race, there will be a Fun Run/Walk at 11 a.m., a free DJ Dance Party, and fun for all ages.  DJ Ken will attempt, with Rene's assistance, to lead a fitness Zumba dance while waiting for runners to return!  Inspiring others with her positive outlook, Rene will be present to cheer on the participants.  At this point (and if her doctor permits), she would even like to participate! Online registration to "Run With Renee" is available on Active.com, email tallyrx2@hotmail.com, call 304-676-7910, or click the link above. Join the BSHS Cross Country team for "Fall for Fitness" 5K on Nov. 16th, celebrate fitness, and

Meet Rene.

It "Runs In the Family"

Here is an inspirational running story! which shares the benefits of exercise for healthy living for ALL ages. (If I posted correctly, click the link above!)  Did you watch it?  Isn't that a cool story!

First, I want to thank Anne for allowing me to share her family's running story on my blog where I journal about this crazy family of mine.  You see, she sent me the link for PD awareness month and well, let's just say... it inspired me!

So, here's what I did.  I signed us all up for a family run!  And am I ever excited!  Violet's middle school track team is participating in a Run/Walk to End Child Abuse this weekend.  What a cool opportunity for some family fun and contribute to a great cause in our community.

The last time I did such a thing Dan told me I better never do that again.  Well, I sorta kinda did in March and we all had fun...so I did it again. (Yes, I'm exagerating here...a little!) Coming up, not just the Hott crew, but also our nieces from Philly and Pittsburgh will be joining us at the 5K Run/Walk to End Child Abuse in Hancock, MD.

Wanna come too?  Ashley and Crystal are!  (Did I tell you I am excited?)  It really "runs in the family!" Well, at least this weekend it does.

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

Run Like the Wind!

"Run in such a way that you may win!"
1 Corinthians 9:24

While watching last night's WSMS meet in Charles Town, another mom said she saw this story about Violet in our community paper!  Watching Violet run reminds me how God has blessed me with this beautiful (no longer a) baby girl.

With that ponytail blowing in the breeze, Violet managed to pass two runners in the 4 X 400 relay to finish her personal best in addition to her 2:49 personal record in her 4 X 800, passing two again!!  We are so proud of her.

But what impressed me even more was watching her with the 400 relay team.  You see, a last minute stand in replaced another friend who fainted at the field.  Violet's excited text to her friend in the hospital was this:

"We got second!  We ran for YOU tonight."

Sometimes, some of us may not always get to do the event we want and we may not always "win", but when they run for the team, well... that's grace!

The Final Hurdle Finale at a Middle School Track Meet

http://momsoffaith.com/2012/04/the-final-hurdle-part-2/

 This week's column is "Part 2" of The Final Hurdle.  Please click above to see what happened to Violet after she took her big spill at her first hometown track meet.  And, here are a few pictures of our "hurdlerer" (Thank you to the photographer - Dan's brother, Charlie Hott.)

When I "fall" from now on, I sure will remember to learn from it, as did Violet, and the lessons will carry me to my next hurdle.
“When times are good, be happy; but when times are bad, consider: God has made the one as well as the other.”  Ecclesiastes 7:14






This was the track meet over at Jefferson High School on April 19, 2012.  Thankfully, no falls... (I closed my eyes this time.  Good thing that Uncle Dick brought his camera! LOL!)

The Final Hurdle

http://momsoffaith.com/2012/04/the-final-hurdle/
There are just about a million images that enter my brain as I share this story with you.  The experience I am about to tell brings up so many different things for me....to many to include in one column.  So, I just decided to tell you the story as it happened.  For all you parents reading this, I am sure you have also experienced this race too; whether it is waiting for the gun to fire, running down the track, or crossing the final hurdle.

You tell me.  Sometimes we just have to hit a few.  Even when it hurts, it can't be avoided.  Here is the link:  http://momsoffaith.com/2012/04/the-final-hurdle/

Part two comes in next week's column.  As our Easter Break comes to a close, I remember this week that Jesus started his life knowing fully what the end would bring.  How many of us would start such a "race" knowing how it ends? Sometimes, just starting another day is hard for some.

Prayerfully, I hope you hear God's gentle whisper "Excuse me, can I tell you something?"  Frankly, I'm not sure what it is but my hope is that it blesses you.  Although as strange as it may sound, "The Final Hurdle" has been a surprising blessing for me.

love, a