Sunday, March 18, 2018

Martinsburg Journal Parkinson's Feataure

Family to Attend Parkinson's Forum

(Link above) Thank you to reporter Tricia Strader for talking with us about our experience with Parkinson's Disease and participation in the upcoming advocacy forum in Washington, DC.

Friday, March 16, 2018

Advocates for Parkinson's disease go to D.C.

Advocates for Parkinson's disease go to D.C.: Families have their ups and their downs, but sticking together when times get rough makes bonds stronger than ever.

In preparation to attend the Parkinson's Policy Forum, Dan was interviewed by local WDVM.  Check it out

Thursday, March 15, 2018

My Dad Has Parkinson's

My Dad Had Parkinson's

Health Union published my second article today on!  Woot Woot!  (Link is above...please comment/and share!)

This features a very adorable Film Director, Levi Hott, sharing his story.  We are excited to share this for the Parkinson's Policy Forum in Washington, DC, and show our representatives!

Sunday, March 4, 2018

How to Disagree using Positive Actions

The craziest coincidence occurred to me this morning.

I was preparing my weekly Positive Action lesson plans and Daily Community Vlogcasts.  For the second week in a row, I was unsure whether or not there would be school tomorrow due to the teacher strikes occurring here in West Virginia.  I am not an employee of a county Board of Education; however, I am an hourly facilitator for character education class provided by our Morgan County Partnership. So, inadvertently my job has also been affected by the stike too (and, I have two students in WV public school).

Please allow me to explain.  In the school where I work, I write a daily vlog with content concerning character education and material related to raising student assets with promoting students social and emotional well being in order to achieve academic success.  Much of the content I prepared happened over the summer months before school even started; writing blogs, filming videos, and researching videos to correlate with daily themes that encourage students to make positive choices, being kind to one another, and creating a caring climate.

Imagine my surprise when this week's feature scheduled for March 8th is Kid President talking about "How to Disagree"...check it out.


To see the vlogcast in its entirety that is scheduled to post THIS Thursday, March 8th, click here:  How to Disagree by Kid President

Crazy how this vlog was scheduled this week!

Monday, February 26, 2018

An American Pie Parody Returns for West Virginia Teachers, and Tax Payers

As I was writing our Community Vlogcasts for Positive Actions this week, not knowing if I would get to go to work while waiting to hear if the teacher's strike would continue here in Morgan County, well... here in West Virginia..., all the news of unions, PEIA, teacher's salaries, health coverage, WV public employees, tax payers,... it all got me thinking about a little parody I prepared nearly five years ago.  

Here is my revised version, now sadly #2 version, of American Pie, utilizing a little liberty with the "levee" and hoping we all will start "thinkin' past tomorrow."

Sing along with me.  Come on....I know you know the melody!

 A long, long time ago
I can still remember how that teacher used to make me smile
And I knew if I had my chance
That I could make those students dance
And maybe they'd be happy for a while
But now May 8th makes me shiver
With every Facebook post I quiver
Bad news on the doorstep
I couldn't take more more ed-
itorial in the Morgan Mess
When I read about the other side
But something touched me deep inside
The day the teachers cried

So, bye-bye, Miss American Pie
Drove my School Board to the Levy
But the Levy was dry
And the ole Sheetz boys were drinkin' coffee and high
Singing this'll be the day that they cry
This'll be the day that they cry

Did you vote for the Levy then
In the 50's it was when
Morgan County they began
Do you believe in your success
Can schools save us from the rest
And can you teach me how to do with less
'Cause I saw you spendin in the store
You both bought brand news shoes and more
Man, I want some of those too
I was a lonely tax payin' broncin buck
With bills and kids in a Suburban truck
But, I knew I was out of luck
The day the levy died
I started singin'

Bye-bye, Miss American Pie
Drove my School Board to the Levy
But the Levy was dry
Banks left town, with others not far behind
Singing this'll be the day that they cry
This'll be the day that they cry

For five decades, we've been on our own
Now, May and his teachers strikin' all alone
But that's not how it might soon be
With the levy gone jobs at the Dairy Queen
will be all our kids have seen
Said a voice that came from you and me
Oh, and while the King was looking down
And Brooks tried again to steal His thorny crown
The courtroom was adjourned
Kate's verdict was returned
And while Lenin read a book on Marx
The band still practiced in the park
Parents sang dirges in the dark
The day the levy dies
We'll be singing...

Bye-bye, Miss American Pie
Drove my School Board to the levy
But the Levy was dry
And the ole Sheetz boys are drinkin' coffee and high
Singing this'll be the day that they cry
This'll be the day that they cry

I met a mom who sang the blues
And I asked her for some happy news
But she just smiled and turned away
I too have bills at the sacred store
Where my kids need fed like yours before
But the man there said the levy wouldn't pay

And in the streets the students screamed
The teachers cried, and the parents dreamed
But not a word was spoken
School buildings all were broken
And the three men I admire the most
The Father, Son and the Holy Ghost
They caught the last train for the coast
The day the levy died
And they were singing

Bye-bye, Miss American Pie
Have we learned anything?
With the Levy gone dry?
And the ole Sheetz boys still drinkin' coffee and high
Singing this'll be the day that they cry
This'll be the day that they cry

Saturday, December 30, 2017

It's Time

"It's time."

It's time for school.  It's time for work.  It's time to buy groceries.  It's time to pick up the kids.  It's time to go to town.  It's time to run a load of laundry; get dinner started; clean the house; take a shower; look at lesson plans; get up, go here, get dressed, go there, brush teeth, take a pill, eat, sleep, breathe, pee!...

It's time...

...for a D.B.S.!

Holy crap!  Really?   Like the rest of the world rolling ever closer to the end of 2017, this now 52-year-old-gray-haired-PD bloggin'-hott-mama-of-4 with an endless tirage of time for stuff to do came to a screeching halt recently when she heard a very smart doctor say to my hotthubby, Dannypoo, "It's time for a D.B.S."


I've heard of DBS, or Deep Brain Stimulation, before.  Of course we have.  A DBS is a surgical therapy for people with Parkinson's Disease.  Sure, we have even met a few PD friends who have undergone this procedure.

But, like normal...I decided to file DBS away and pretend it is only for people with crazy symptoms, super rich, and well, last resort ditch efforts to maintain a "normal" quality of life.  Besides, from the little I heard,  getting a DBS is a super scary BRAIN surgery where the patient stays AWAKE!  Nah....not my hotthubby, right?


After tweaking a wide range of medications and watching stinking Parkinson's Disease symptoms creep up for the last 10 years since his diagnosis, in 2017 we heard "It's time for a DBS."

"In DBS surgery, thin wires called electrodes are placed into one or both sides of the brain in specific areas (either the subthalamic nucleus or the globus pallidus interna) that control movement."  Deep Brain Stimulation for Dan has been on the horizon for a few years now.  However, over the past few months, we have been to a number of appointments with neurologists and, just before the holidays, met (get this) virtually with a neurosurgeon at the Richmond Veteran's Administration, Dr. Kathryn Holloway.  According to the DBS nurse, Dr. Holloway is a "rock star" when it comes to DBS surgery.  She has done 500 Deep Brain Stimulation procedures with success.  And as a US Air Force Veteran, the surgery can occur, ironically, as part of Dan's VA "benefits".  Wow.  

Time to ramp up advocacy for Parkinson's awareness, funding for research, and development of a cure!  Maybe the Michael J Fox Foundation for Parkinson's Research can fix PD before Dr. Holloway drills a hole in Dan's head!

All the nerves aside, want to know something pretty cool about DBS?  In one of Dan's many appointments, I heard someone say (and I don't remember who said it) that a successful DBS can "set the clock back 10 years" on Parkinson's symptoms.

10 years!

Levi, our youngest, was only 2 years old ten years ago!  Both our sons have no idea of what their daddy was like before the physical limitations of Parkinson's Disease.  A DBS?

It's about time.

"There is a appointed time for everything. 
And there is a time for every event under heaven..."  
Ecclesiastes 3:1

(Return for more "It's Time" blogs to journal our 2018 DBS Journey... Your prayers and support are needed and encouraged!)

Tuesday, October 31, 2017

"Parkinson's Sucks!"

Hearing Michael J. Fox say "Parkinson's Sucks" on CBS Good Morning America, well, made me teary and took me back to 2011.  I don't have PD but Dannypoo does.  Michael reminds me of stuff that sucks that I find hard to think about some days (like Deep Brain Surgery...yikes!).  It's the days that suck less for which we live!
The Emmy-winning actor, who says his neurodegenerative disorder "sucks,"

I found my blog post that was published on "Moms of Faith" in 2011.  To this day, it is unclear the source of the issue; however, stupid Parkinson's managed to complicate the matter.  Here it is:
"Parkinson's Sucks"
Have you ever had one of those moments when you hear something come out of your mouth, and the moment you hear yourself say the words, you immediately wish you could take them all back?  Earlier this year, I was standing in front of, well the entire congregation at First UMC, maybe 150 people, and out of my mouth came the words, “Parkinson’s Sucks!”
It was during the time when the Pastor invites you to make prayer requests.  Yeah.  Our church calls it “Joys and Concerns”; probably similar to several other services happening across the country on any given Sunday morning.  I just couldn’t believe what I heard myself say; I was so embarrassed, I wanted to crawl under the pew.
“Parkinson’s Sucks.”  From the bottom of my heart, I have to apologize for using such lingo.  And please, please, please don’t tell my mom that came out of my mouth.  And for a prayer requests!  How could I be so inappropriate!?  What a knuckle-head I am!
But it does.  Every last stinking symptom; the rigidity, the bradykinesia, the loss of so many things I once took for granted… the unknown, the uncertainty.  During the time I stood in front of my congregation, my husband Dan was suffering from severe Parkinson symptoms and, well, I.was.scared.  His left leg was so severely cramped that my six foot tall husband was shorter than I.  And I am a whopping five feet tall.
I was scared. And,… I was angry.  And you know what?  I still am.
Was I praying?  Oh, yeah!  You better believe it!  And so was just about everyone I knew.  Finally, Dan found a new neurologist that increased his levadopa.  Through meds, prayer, and physical therapy, he has been able to walk once again (as well as regain his height back to six feet).
Am I thankful?  Oh yes, I am thankful Am I thankful for the Parkinson’s?  Absolutely N.O.T.!  But, I’m working on that.
am thankful to my God who listens and answers prayers; because I know that living with PD makes my heart ache daily, it makes His heart ache even more.  I am thankful that He understands and hears my cries.  I am thankful that he will be there for comfort and to carry not only Dan but me too when Parkinson’s decides to be ugly again, as we know it will.
To expect the unexpected — that’s how I live.  I never planned that our lives would be this way as we live with something called Parkinson’s Disease.  So many things have changed:  Dan is now unemployed.  He had to close his business.  Dan will never coach soccer for the boys.  The kids will never see their daddy jump park benches like he used to.   I will never understand why our family has had to change as it has; as would any other family forced to deal with loss of health, or any other unfortunate circumstance.
Which brings me once again to that scripture!   1 Thessalonians 5:18.  I am to “give thanks in ALL circumstances, for this is the will of God.”  Even for the bad stuff too!… even Parkinson’s Disease!  Even the mounting medical bills, the failing physical capabilities, the falls up the steps, trips on the rug, even the day I went to work and Dan was stuck for hours on the bathroom floor.
Here is what else though.  Have you ever heard Martina McBride’s new song called “I’m gonna love you through this”?  Check it out.  There is this huge biker dude that has an enormous tattoo on his arm that says “Cancer Sucks”.  (I’m thinking of getting one too; except it would say “PD Sucks!” – Just kidding mom!)  The song deals with the circumstances of people living, and dying, with cancer.  Simply, they are going “to love them through” the pain.  Amazingly, sometimes that’s just enough.
You know what?  Without a doubt, I know that God is going to love me through this.  In the song, each “I” is a different caretaker.  For me, my caretaker is God.  With God loving me through Parkinson’s, I somehow feel stronger.  Pretty cool miracle, huh!?  I now know how to rejoice for all the better days and be grateful for the really little things, all the little miracles around me, from sunsets to new freckles, too precious to waste on worry and work.  I am thankful for God that he as taught me to appreciate each new day; for Dan is only as healthy as he is right now at this moment.  Aren’t we all?  That’s the gift of Parkinson’s.

for that, i am thankful.

Copyright © Angie Hott, Moms of Faith, All Rights Reserved 
Original Moms of Faith post here:Parkinson's Sucks

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).