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'-mama...me!  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!?  She.is.curious!

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...

...soon!

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!)