Friday, July 14, 2017

"The Ask" for Parkinsons Advocates

Imagine my surprise when I opened an email from Caitlin Jurman of the Michael J Fox Foundation for Parkinson's Research!

She said the picture for their blog post is "seriously perfect" and "I will love it."

Hmmmm...wonder what it is?

"Advocate this August Using MJFF's New Resources" features our US Senator from West Virginia, Joe Manchin, with non other than this never-to-be-52-year-old-grey-haired-Hott-bloggin'!  Check it out:

Senator Manchin receives my "ask" during the Parkinson's Policy Forum. (Picture from the Michael J. Fox Foundation.)
Holy cow! (He's tall!) Here's what happened: In February, Dan and I attended the Parkinson's Policy Forum on Capitol Hill with, you guessed it, Michael J Fox, and 200 other people with PD from across the country.  We spent a day in advocacy training before we ventured the Capitol halls with our new Parkinson's friends from West Virginia and our Fox Foundation escorts, Lydia and Jamie.  It's still hard for me to fathom lil' ole me from Hott Mountain hanging out with elected officials (and Michael J. Fox) in Washington, DC.  I had to wear my big girl clothes!

Prior to our arrival, we were asked to prepare an impact statement, for something they called the ask, for the Representatives, and encouraged to share our personal stories.  This was a question on which I thought long and hard.  Why is it important to fund brain research?  Why do people with Parkinson's Disease need their health benefits protected? Oh my goodness...where do I start!  Initially, I was a bit nervous to share my story.  These people are way too busy to listen to me!

But, I told our senators that it was important for them to fund brain research happening at the National Institute of Health and to protect health coverage for people with Parkinson's.  I asked for their support as I shared with them my "ask" in the form of a special picture.

See the special picture?  Senator Manchin is holding it in his hands posted on the Fox Foundation blog.

Special?  Oh it sure is!  Look....

This is our Hott family the day Dan walked Caity down the aisle to marry Brian on a sand dune in Duck, NC, June 8, 2014.

A walk. For most of us, walking is not such a big deal, right?  For most of us, we just walk from here to there...simple as that.

But, for people with Parkinson's Disease, just a walk requires all the elements to be exactly right.  Rest. Diet. Weather. Heat. Stress.  And, not to mention, the careful timing and combination of medications.

So, add in levodpoa to control muscle movement, and walking becomes natural!...  Sometimes.

As you can see, this day was a celebration.  Dan proudly walked Caity to their next "step" in her young life.

Notice others in the picture?...  Caity has a little sister.  With a lump in my throat, I asked our representatives to help people with Parkinson's Disease because before we know it, ....

Dan will be walking her down the aisle too.

 "For you have delivered me from death and my feet from stumbling, 
that I may walk before God in the light of life" (Psalm 56:13).  

"Ask, and it will be given to you; seek, and you will find; knock, 
and it will be opened to you."  (Matthew 7:7).

Wednesday, March 29, 2017

Nice Bucket Challenge Needs YOU!

Attention Parents!  I have a "challenge" for you!

Ironically, I stumbled across an article from Today's Parenting Team which magically partners with the Positive Action "word of the week."  This week, we are talking about KINDNESS!  The blog discusses two magical words that can change not only a student's day, but also yours too!

I facilitate a class at our local elementary school where approximately 380 children participate in a series of lessons to raise student's assets called Positive Action with the Morgan County Partnership.

This final nine week term, we are focusing on becoming a school "community that cares" by following the Golden Rule.  Each week, we discuss a new "code of conduct word."  "Positive Action is a systematic education program that promotes an intrinsic interest in learning and encourages cooperation among students.  It works by teaching and reinforcing the intuitive philosophy that you feel good about yourself when you do (or choose) positive actions."

Warm Springs Intermediate School has been challenged by Positive Actions to seek, recognize, celebrate, and perform random acts of kindness this week.  We have asked the children to be kind by using "nice" words at school - and at home!

As we return to school, we will be asking students to participate in the "Nice Bucket Challenge" where a classmates will fill a bucket with "nice" words describing another student.

So, by beginning your child's day with these two little words, "Be Kind," you will help Positive Actions to encourage students to follow the Golden Rule to "treat others the way you want to be treated!"

Do you accept the "challenge"?

Monday, January 30, 2017

Third Grade Girl Is Curious About the Brain

Meet Miss Snyder.  A third grader in (yes!) Mrs. Fox's class at Warm Springs Intermediate School.  And, guess what!?!

Yes!  She is curious "about people that have Parkinson's disease brains, like Mrs. Hott's husband."

And, she says, "I love Mrs. Hott's shirt, Team Fox!"

As a facilitator for a program called Positive Actions, it is my job to encourage and inspire elementary students in grades 3, 4, and 5 to consider their unique qualities, diverse gifts, and special talents.  We learn that every child can choose a positive path.  Recently, we asked nearly 400 children, "What are you curious about?"

Since my audience is a mix from rural West Virginia, we often challenge each to overcome their obstacles with encouragement that with positive actions, even those from an itty-bitty town in the Appalachian foothills can dream big and provide exciting and positive contributions that can change our world.  Yes, with positive actions today, third graders are preparing to improve their tomorrows!

Wearing my "Team Fox" shirt on our day when the Positive Action word is the coolest ever (in my book):  "curiosity."  Digging deep in my heart for a message of hope to encourage children to talk about what makes them curious and why "curiosity" can contribute to their futures, improve their quality of life, and, ultimately, provide a resource to propell them not just to the next day or grade, I offered that with "curiosity" young students can begin a journey, much like Katherine Johnson!  Have you heard of her?  Her story can be found in the new movie, Hidden Figures, another West Virginia girl, who was curious, about.... numbers!  With math, Ms. Johnson calculated the formulas to send John Glen in to orbit!  Pretty cool curiosity!

As a black woman leaving small town West Virginia in the 1960's, Katherine Johnson had plenty of struggles.  Rather than wallow in negativity, Katherine chose a positive path.  She followed her curiosity all the way to NASA!

That's me.  At barely 5 feet, I am a 51-year-old-gray-haired-PD-blogging-Positive Actions teacher who, like Katherine, and like Michael J. Fox, is "Always Looking Up".  I have to.  After telling the class about my adorable, hott-hubby Dan having a chronic brain illness, I share that it is indeed possible to remain positive, rather than wallow in all the yucky changes that came once Parkinson's Disease moved in our house in 2008.

With research, exercise, healthy choices, education, policy, and inspiration for STEM (science, technology, engineering, and mathematics) I advocate for positive choices not only for PD and but also our youth.  Who knows?  Maybe by encouraging students to be curious, they will seek a cure to this disease that "affects the nerve cells in the brain that produce dopamine"  I shared this with a room of 3rd graders, then...I shared that I am curious about the brain so I understand more about Dan's symptoms.

Can I just say "wow!"  A third grader made me this paper.  She is curious about the brain.  Want to know that I think?  These students are going to cure Parkinson's someday...


So, watch out Capitol Hill!  Dan and I are coming to the Parkinson's Policy Forum in late February to advocate for people with PD.  We will be meeting with representatives, sharing our story in support of benefits and research for Parkinson's Disease.

Fund science.

Cure Parkinson's Disease.

(And, stay curious!)

Saturday, December 17, 2016

Advent Light

"Arise, shine, for your light has come,
and the glory of the Lord rises upon you.
See, darkness covers the earth
and thick darkness is over the peoples, 
but the Lord rises upon you
and his glory appears over you.
Nations will come to your light, 
and kings to the brightness of your dawn."
Isaiah 60:1-3

This Christmas season, our Hott family was invited to read for the first Sunday of Advent.  Having last read for Advent many years ago, this now 51 year old, gray (?,) haired, hott-blogging, mama of four was once again nervous about reading in front of the congregation on November 27th.  The situation was not helped at all when called, I was left standing all alone, my kiddos and hotthubby, left me up there all by myself!

Not in the dark for long, I managed to read the Advent scripture from Isaiah (see above) for the service, and in all honestly, it wasn't so hard.  A story teller at heart, I feel honored to share from the best stories of all, the Bible.

So, in "light" of the darkness covering our world, from recent world events to community concerns here at home, sharing a picture from my phone from this week's GoFriend's Jesus Celebration, an afterschool program on Thursdays, brings both goosies to my arms and tears to my eyes.

So I wanted to share.

Looking closely at this picture, are approximately 100 small praying children who gather on a weekly basis to be loved and hear the word of God.  Here, their worship leader leads them all in a quiet prayer of praise for the season that celebrates our baby Jesus.

As I opened my phone to observe a moment captured, I was struck by the "light," and realized we had an angel among us at GoFriends.  Do you see her?...

...I do.

And seeing her shine over these children, this light leading each to the heart of Jesus, I just want to thank God for these little hearts that now know love and will hopefully never, never feel excluded, insulted, disenfranchised, or dismissed.

Thank you Ms. Jenny, for sharing the "Good News" about baby Jesus to so many children in Morgan County.  

Friday, December 9, 2016

"One Last Time?" Really?...

“One Last Time”

Are you sad about the news today?  Would you like the opportunity to express your sadness? Show the Ellis Family how much you will miss them. Hug a kid today that will never experience “The Movement” or “Section 208.”  Rich and Jenny have opened their hearts and home to a youth ministry that has changed the nature of our community and your world.  

Express your love peacefully as we demonstrate our sadness with a Community Circle of youth, parents, friends, this Sunday, December 11th, 8:00 a.m. outside the steps of First Church on Green Street, Berkeley Springs, and 10:00 a.m. at “The Blue” as our community and youth will gather “one last time” to say “goodbye” to the beloved Youth Pastor, friend, and brother of First United Methodist Church, Rich Ellis and family, who have been “let go”… for "one last time"
... where we were never allowed the chance to see Rich in church one last time, 
... where the congregation and administration will hear from, some of us, one last time.

Everyone shall sit under their own vine and fig tree
And no one shall make them afraid
They’ll be safe in the church that we’ve made
I wanna sit under by own vine and fig tree
A moment alone in the shade
At home in this church we’ve made
One last time
The congregation will hear from me
One last time
And if we get this right
We’re gonna help the youth say “goodbye”
One last time.

 “One Last Time,” say a prayer for us
One last time,
The congregation will hear from us
One last time
And if we get this right
We’re gonna teach kids how to say
You and I

One last time

(Writing this post pretty late last night, I woke up this morning with Lin-Manual Miranda's melody and lyrics still repeating in my head. I must thank Hamilton (and Lin) for the words to heal the hurt, understand the process, and appreciate this shade as we sit under a vine that was planted by a pretty special servant of God whose fruits I am hearing from my young children as they also wake up with expressions of sadness at the reality of things like not going to Lighthouse, experiencing Anchor Camp, or a house for homeless children and lost hearts.)

Thursday, July 14, 2016

"Gotta Catch 'Em All!" Run for Robots 5K at the Morgan County Fair

“Gotta Catch ‘Em All” Run for Robots 5K at the Morgan County Fair
Call it a frenzy!  Call it a fundraiser!  Call it family fitness!  Call it whatever you want!  But be sure to also call it Run for Robots 5K and Pokemon Go!  Now, while out on your walk or Run for Robots 5K coming up this Saturday, July 23rd, to launch the Morgan County Fair, be sure to capture a Pokemon, or two!  The fun begins at 9:00 a.m. from Berkeley Springs High School.
What?!  Just how does the popular Pokemon Go! virtual game collide with a new event this year in Berkeley Springs?  Well....I’ll tell you.  Community running club at First United Methodist Church, or FUMC Go Run for God, is hosting an event to help Morgan County students raise money for STEM, or science, technology, engineering, and mathematics.  For a donation of $10 per person, all ages and abilities are encouraged to join us for a fun filled 5K run/walk through historic Berkeley Springs, from following the path of George Washington to creating a new Pokemon Go team, tie up your running shoes, bring the kids, and prepare to “Catch “Em All!”

Run for Robots 5K at the Morgan County Fair is for both athletes competing for personal times as well as others looking for a leisurely fun walk/run.  It is all about family fitness and fun under the watchful eyes of Morgan County safety officials!  Official times will not be taken nor awards for age categories.  Rather, meet Pastor Doug Hoffman of First United Methodist Church who will present the first six runners with wood “Run for God” medals hand-crafted by students of Berkeley Springs High School wood-shop.

For Pokemon Go enthusiasts, characters are waiting to be captured all along the route!  From Oddish, Gloom, Psyduck, Magikarp and more, runners and walkers will not want to miss surprises waiting at George Washington’s Bath, Portals, to Gifts & Souvenirs at Berkeley Springs Memories, and more. Return to visit merchants following the race for wonderful local arts and crafts, visit the Fair, stop by the park later for live entertainment at 5:30, then stay for dinner downtown at one of Berkeley Springs fine restaurants.

Run for Robots is a gentle, flat, 5K which after starting from the high school, will proceed north on Concord where Oddish was spotted, north on 522 passing the Berkeley  Springs State Park, crossing Fairfax Street, toward the Star Theater.  Turning there, the route then enters the park for refreshing healing water break, passes George’s bath, and circling West Virginia’s smallest State Park for a return south on 522.  After passing BSHS, meet more characters along Widmeyer Way’s south playground for a return to the finish line where refreshing water will be provided by Berkeley Springs Water, the original natural spring water!

Proceeds go to benefit the Morgan County Robotics Program, a county wide STEM initiative to help students have classroom robotics opportunities and Relentless Robotics 4H Clubs, an after school program to build and program robotics technology as well as competitive teams with FIRST, For Inspiration and Recognition of Science and Technology.

Registration begins at 8:00 at Berkeley Springs High School.  Run for Robots will begin at 9:00 a.m.  For early online registration, go to or call Angie Hott at 304-582-8696.  Morgan County Robotics and Relentless Robotics 4H Programs are administered by the WVU Extension Office and Morgan County Schools with generous support from community sponsors like State Farm Insurance, Tom Seely Foundation, Gat Creek Furniture, FAST, STS International, and the Eastern WV Community Foundation. 

The WVU Extension Office in Morgan County has hosted an annual fair and 5K for some time now.  It was five years ago when this now 50 year old grey haired PD bloggin hott mama of four decided to sign up the Hott family for their first family 5K.  For some reason, I got the crazy idea from Dan's neurologist that exercise is a good thing.  Well, until one attempts their first 5K in the mountains of West "by God" Virginia.

With two then little boys in tow, I cheated and finished early; however, my hotthubby Dan finished the race my hero! (It's true!  See here:  Believe it or not, this day began a journey that not only includes a few more 5Ks, a couple 10Ks, and yes (I kid you not), two, dare I say TWO half marathons!

Just how crazy is that?!

Wednesday, November 11, 2015

Little Boy Soldier

Isn't he adorable?!  Hard to believe this cute little guy grew up to be a soldier for the United States Navy and served his country in Special Forces during the Vietnam conflict.  

With a heart like a teddy bear (and a growl like a grizzly!) Charles Hott continues to fight a daily battle.  Recovering at the Baltimore VA Medical Center from complications with internal bleeding, "Charlie" returned from one war, overseas, to another here at home.  

With two little boys of my own who are also pretty darn adorable, this now 50-year-old-grey-haired-hott-mama-of four can not fathom the idea of any of my kiddos witnessing what our "Charlie" has seen.  What a heartache for mothers to watch their babies leave a young man and return all grown up - sometimes as different people after experiencing all the craziness our world has to offer.

As Charlie remains sedated to heal from his recent surgery, I can only imagine how his mother, Violet watches patiently with our heavenly Father by her side.  I am sure she sits next to him with the Holy Spirit in Charlie's hospital room on the fourth floor of the VA Center in Baltimore.  We know that they are there, waiting relentlessly, for Charlie's health - and Charlie's heart to come home.  We know they are there because you (and I) have asked for their presence in prayer.

So, with today being Veteran's Day, your continued prayers are appreciated that God will bring this soldier home... again.  

"So the Lord must wait for you to come (home) to him so he can show you his love and compassion... Blessed are those who wait for his help."  Isiah 30:18

Saturday, August 8, 2015

Fifty Ways Fifty Feels Fun!

Fun? Seriously!?

On the eve of my 50th birthday just the other day, my own mom reminds me over the phone on one of our many daily conversations:
"Have fun today!....  Because tomorrow you'll be in the last half of your CENTURY!"

Then she erupted in a fit of giggles! "Bwhahahaha!" She does that a lot lately!  Really Mom!!!  Wow!

But I decided a loooooong time ago, that each day is a celebration!  Regardless of what life may throw at me, from four busy kids to a hotthubby with PD, I purposefully seek to find the positive in each and every situation.  So, on that note, on the eve of my 50th birthday, I made all my mom friends sing "Happy Birthday!" to me!  Of course, they really didn't mind (at least I don't think they did...) that on Monday M.O.S. (which stands for "Mom Only Swim") I bought a cheesecake, stuck in some candles, fired them up, then began my 50th year (a little early) with a celebration that "Fifty Feels Fun!"

My flame lit cheesecake!  Thanks for the picture Ms Nikki! Fifty Ways?

Oh sure!  So, rather than moan and groan about joining the bottom half of the century, I thought that I would attempt to see if I could think of 50 ways to celebrate turning 50.  Maybe you can help me, here we go:

1)  Provide your own favorite dessert at a gathering.
2)  Force a crowd of unsuspecting friends to sing "Happy Birthday!" to you.
3)  At 12:00:01 a.m. on your actual birthday, run in to your 15 year old daughter's room where her 15 year old friend is sleeping over and shout:  "It's my birthday!"
4)  Then do a little dance and run out of the room.
5)  Check Facebook at exactly 12:04 a.m. on my birthday just to see if there are any "Happy Birthday" posts to me.
6)  Read 8 "Happy Birthday" posts!  Then force yourself to go to bed because, really,... who wants to sleep on their 50th Birthday?
7)  Enjoy mimosas for breakfast.
8)  Prepare Eggs Benedict for all the crazy people in the Hott House, even those that don't eat it.
9)  Invite a friend, or 10, to celebrate at the coolest restaurant ever:  Lot 12!  Except, they are closed on your birthday day so make reservations for two days later!
10) Sign up to do a half marathon for the first time ever, in Cumberland!
11) Go for a run at 50, because you signed up for a half marathon a month away.
12)  Enjoy 4 miles in the early morning W. Va. outdoors without my two annoying dogs (because I snuck out the basement door to keep Freckles from waking up even though he is deaf).
13) Say a prayer for all those I love during my run. Say more prayers for my neighbors as I run by their houses.
14) Decide to text Jenny Ellis as soon as I get back to the house with an idea!
15) Return home, walking up that stinking hill, and drink a giant glass of water!
16) Discover Leah walking around outside with a beautiful butterfly we release in our weedy flower garden just before she presents me with the most amazing dragon drawing ever.
Leah's Dragon
17) Blast your favorite musical Wicked in the house at 9:00 a.m.! (even though the kiddos are still sleeping because it is time for the entire world to be up to celebrate my 50th birthday)!
18)  Sing at the top of your lungs "I have been changed FOR GOOD!"
19)  Run 8 loads of laundry.
20) Sign up for another half marathon because, well, I just turned 50, but this one is in Vegas!
21) Play the soundtrack to Wicked,... again because, well, people are still sleeping!
22) Sing loudly "Defying Gravity"
23) Attempt to defy gravity while making hollandaise sauce for Eggs Benedict.
24) Fall in the kitchen, because,... well.... of gravity.
25) Stir up Leah reading downstairs in Caity's room.
26) Make another mimosa.
27) Eat Eggs Benedict, twice.
28) Receive loving birthday surprises from my favorite people in the universe, like Violet's new coffee mug filled with chocolate covered coffee beans and beautiful Pinterest card!
29) Display my own Lego Sigfig next to my original Levi Lego creation of our log home on the piano.
Original Lego Art by Levi

30) Scream hysterically when opening my hotthubby's card with tickets to see Kristen Chenowith at Wolftrap on August 28th!
31) Watch "Taylor the Latte Boy" 50 times on youtube, because...yes, I am 50 now!
32) Giggle nonstop because Kristen Chenoweth is hysterical.
33) Sob nonstop watching Kristen and Idena sing "For Good" because it is just the best duet ever.
34) Discover a youtube video with Kristen and Anna Kendrick that is amazing!

35) Remember to text Jenny about an idea for which she'll probably consider me a weirdo.
36) Text Jenny Ellis.
37) Put on a tiny bikini (because no one is home but me and well, I am now 50).
38) Blast Wicked for the third time, except this time on the outside speakers (just in case the neighbors missed it in the kitchen, or they are also still sleeping!).
39) Float around the pool.
40) Sip on some sweet tea someone left here earlier this week.
41) Wonder which teenager went home without their giant blue Nike's sitting by the pool.
42) Remain puzzled by the mom who went home last night without her pool bag.  Make a mental note to text someone about that.
43) Forget to apply sunscreen.
44) Wonder if Dan wants to go to Vegas in November.
45) Spend the best 90 minutes ever with my 11 year old Isaac while floating around in the sun.
46) Notice Dan arrived and is sitting by the pool too, sipping a sweet tea.
47) Remember he really hates sitting outside, but is hanging out with me because, well, I'm 50 today!
48) Enjoy my favorite ribs and corn with my favorite people for my first supper as a 50-year-old-grey-haired-PD blogging-hott-mama of four - and sometimes more!  Talk to Caity on the phone.
49) Lace up my Runners Retreat, size 5, kid Brooks sneakers again on my second day as a 50 year old and go for a run.
50) Register to do a half marathon in Key West in January 2016 and dream about sand under my before mentioned sneakers while it is snowing up north.
51) Arrive home finally after my Lot 12 dinner party celebration to discover 50 people in my house!


Sounds like the PERFECT birthday to me!  While most of this list actually occurred, some items remain to be seen; like registering for a half marathon right down the Vegas strip or around Key West in the winter.  Still waiting on the mimosas; but just thinking about champagne at any time feels festive, right? And honestly, I think there were way more than 50 people here last night,  You guys are the best!  Thank you ALL for loving me and my family, my crazy ideas, reading and sharing my posts, and most of all, making turning 50 feel like so much fun!  Where two or three...or 50 are gathered, right?

"No one has ever seen God. But if we love each other, God lives in us, 
and his love is brought to full expression in us."  1 John 4:12

Know what?  I saw Him here on Hott Mountain many times this week, His full expression, in the faces of each of...!

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!

Tuesday, May 5, 2015

Thanks for the Ride, Russ!

"I was a friend of Russ Tutterow."

Chicago was my home in the late 80's when knowing Russ Tutterow connected me to a new family far away from my hometown, Berkeley Springs, WV.  A fresh theatre college grad from "back east," I arrived in Chicago and settled in my first studio apartment.  Russ was my first dinner guest.

I will never forget the look on his face staring at my Italian sausage plate of spaghetti.  I guess it really was kinda funny; but Russ graciously accepted my West Virginia hospitality, an expression of gratitude for his help when I was new in town, during the days when the Chicago Dramatists Workshop was still on Halstead (right street...I think?'s been such a long time!)

While attending one of the many gatherings of playwrights, during the holidays of 1989 Russ looked at me all decked out in my finest holiday comfy clothes (I was barely 5 feet and 7 months pregnant) and said, " look like a Christmas bulb!"  Bob Goodman giggled.

Later in early 1990, when I found myself soon to deliver my first baby much earlier than expected, Russ went to the airport to pick up my mother, arriving from West Virginia.  Over the last 25 years, she has never forgotten this ride and I have often heard her retell the story where the first words she heard getting off the plane were from Russ Tutterow: "Congratulations!  You have a new granddaughter!  The baby arrived early, delivered after an emergency C-section just a little while ago."  Now remember, Russ had never met this woman.

Quickly receiving a hard slug in the arm from my West Virginia momma and a surprised "NO! Already?!"...Russ then drove my mom to Ravenswood Hospital to meet the first grandchild of her only daughter.  This, my mom will share, was a ride she will NEVER forget.

My mom, me, and Russ Tutterow.
In the hospital after Caity was born, Jan. 1990.
Arriving to Russ' car, he gently explains with a twinkle in his eye that his car had recently been stripped, by thieves!  Unsure exactly what to expect, my mom rode to the hospital driven by Russ Tutterow in a lawn chair!

Still, she too will add "I was a friend of Russ Tutterow."

Shortly after Caity was born, I eventually moved back to West Virginia where I remain today.  Of all the excitement of living in Chicago and loving the theatre scene, what I always missed the most was the ever warm hug, twinkling eyes, and smile of Russ Tutterow.

The news of Russ' passing yesterday morning makes my heart sad because

"I was a friend of Russ Tutterow."