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.

My Dad Has Parkinson's

My Dad Had Parkinson's

Health Union published my second article today on ParkinsonDisease.net!  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!

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."

Wait....what?

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?

Wrong.

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!)

"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,"

 CBS NEWS

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.

I 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

"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).

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!)

Advent Conspiracy for Cyber Monday

December 1st!

Cyber Monday!

So, the kiddos are back to school and this morning is the first time I have checked my email since before Thanksgiving.  Holy cow!  214 messages in my "Promotions" inbox!  Are.you.kidding.me?

Thinking I could do a little online shopping since the house is quiet (and Levi is not manipulating my laptop), the shear amount of great deals and offers are making this 49-year-old-grey-haired-PD blogging-hott- mama-of-four's mind spin!

Aaaaaarrrrrgh!  Delete,... delete...  DELETE!

You know what?  Yesterday, Pastor Stan shared this video called the "Advent Conspiracy."  Check it out.  I never realized the US spends $450 billion at Christmas!  Wow...that sure could purchase quite the STEAM robotics engineering program for our at risk county here in rural West Virginia.

Excuse me, can I tell you something?  My sister-in-law, Tammy (who headed home to Philly early Sunday morning) proposed just this idea on Thanksgiving Day!  She suggests that our family contribute to a charity collectively as a family rather than purchase gifts for adults; and continue her traditional yummy cookie and mint fudge exchange!  Her idea was that we select the Michael J Fox Foundation, who is researaching a cure for Parkinson's Disease.  There's a cool gift!

I love it!  And, how interesting that within an hour after she heads home Pastor Stan shows us all this video.  I think God was winking at Aunt Tammy as she headed north on that PA Turnpike!

#MichaelJFox - Are YOU watching? My Review of Michael J. Fox's New Sitcom

The new Michael J Fox Show.  Are YOU watching?

I.am.

Yes, this 48-year-old-grey-haired-PD bloggin-hott-mama-of-four tunes in faithfully to NBC on Thursdays at 9:30 p.m. (est).

Why?  Well, not to see the comeback of Michael to prime time television.  No, not even to laugh with Michael at his own victory over a chronic illness.  Nope! Not even to see how the writers will incorporate Parkinson's Disease into the script.

For me, well.... I can't wait to see what this little guy will do next.  Sound crazy?

But just look at him!  Those chubby cheeks erupting with freckles.  That strawberry blond head full of luscious curly locks.  Those enormous blue innocent blue eyes.  And, get this:  He's eight!  I wonder why I love this guy so much?!  Wait a minute, check out my 8 year old!

Sound familiar?  Well, he is.  Just look at him!

And so is so much of what I see while watching Michael's new sitcom.  Although the marketing folks gave away all things interesting in their promotion of the pilot episode, The Michael J. Fox Show, and in all honestly, I was drawn to its' efforts as a follower of The Michael J. Fox Foundation for Parkinson's Research there are some genuinely cooky life parallels I keep discovering that keep me watching.  There are several "real life" scenes that only a "Parkie" would understand.  Here they are:

*  Family Dinner -- The painstaking pauses of Parkinson's Disease that keeps a family waiting, yes waiting to eat!
*  Bedtime Banter -- The husband and wife beneath the covers kinda talk that only a spouse with Parkinson's could understand.
*  Nightmares and Sleep Talking -- The endless, crazy PD dreams that startle and stir slumber.
*  Timing PD Meds -- The inclusion of Michael's PD meds into his daily routine is a scene ripped directly from the Hott House!
*  Crazy Kids and Goofy Relatives  -- For my favorite aspect of The Michael J. Fox Show, the complete immersion of his children into living with a dad that has Parkinson's Disease is celebrated in this new comedy.

For this, well,... Michael has me watching.  Because, you see, here is where between the laughs and antics of his quirky moves and dropped lines (another PD symptom), I find that watching The Michael J. Fox show is like standing out on my own front porch and peeking in the window.

Although diagnosed a bit later than Michael, my "hotthubby" Dan came home one day in 2008 and told me that his neurologist was certain that he had Parkinson's Disease.

Wait,... really?

And like Michael J. Fox, we had a family of four.  How would we manage to raise two boys who were at the time just 3 and 4 years old?  Will the progression of this stinking illness mean that Dan will be capable of dancing with the girls, now 13 and 23, at their weddings?

But here's what happened.  Parkinson's Disease just became our new normal.  Not that we were remotely close in the first place, but we sure learned to enjoy each other n.o.w.!  Rather than "throw in the towel," we chose to give PD a room in our house with the rest of us.  As Michael promotes, we chose to believe in "the power of optimism"... and to to always (be) looking up.

Looking up to the one in control of it all, I find that with God's daily Grace, we find ways to giggle at the little things that living with Parkinson's Disease means.

So does Michael.  For this, I recommend tuning in on Thursdays for a peak at our PD families.  And for those of you that don't have Parkinson's living with your family, well,... you just may find something similar that also gives you the giggles.

Team Fox Superstar Emerges

"It's not about how fast you run but how you run fast!"

Have you heard this?  Well, actually... maybe not.  You see, in Disney's movie "Planes" they tell Dusty that "it's not how fast you FLY but how you fly FAST!"  LOL!

Check out our new Team Fox Superstar!  Levi Hott, age 8, finished third in his age group at the Morgan County Partnership's  "Run for Recovery 5K" on Sept. 14, 2013.   Who knew he could run fast?  And who knows?...maybe he'll become a marathon runner for Team Fox someday and raise lots of money for Parkinson's Disease research.

Wouldn't that be a cool way to contribute to the cause to find a cure for PD in our lifetime?  It was quite by accident, by the way, that Levi chose to wear his "Team Fox" racing shirt.  But it was no accident that all six Hott's participated in another 5K.

This week, Dan had his five year appointment at Johns Hopkins Hospital where he has been a part of a research program for Parkinson's Disease.  His neurologist, Dr. Zoltan Mari, was wearing a button with the Michael J. Fox Foundation's logo and a phrase "ask me about PD research".

So... I asked!  Wow....  Dr. Mari's enthusiasm was encouraging and hopeful that all their work will lead to progress in finding ways to help those living with this stinking illness.  Most of all, we talked a great deal about the importance of exercise.  With four active kids and busy schedules, it is hard not to keep Dan active.

Dr. Mari told us that "they believe that exercise may slow down or improve the symptoms of Parkinson's Disease" (well... he said something like that!).

Oh yeah!  So... exercise is the secret to beating Parkinson's Disease?  Well, let's get busy, off our butts, and exercise!  Come on!

Actually, Dan stretches and walks quite a bit.  In fact, we often find that when people see Dan they always say "Wow Dan!  You look great!"  I guess what they mean is "...for a 56 year old with Parkinson's Disease."  Well, fact is, he does look great!  (Pretty "hott" actually!)  And with well timed meds like levodopa it is hard to tell he has a chronic neurological problem at all.

An exercise program to help with Parkinson's Symptoms?  Sign us up!  Or, at least sign us up for a local 5K for a fun, family night out!  Makes this 48-year-old-grey-haired-PD bloggin-hott-mama-of-four remember our family's first attempt at running a 5K.  It was 2011 when I signed up my reluctant crew to run at the Morgan County Fair, one of the many days my hotthubby Dan shone as our PD "Superstar".

But move over, Dan!  There are new stars in the house!  LOL!  And, these stars never have to finish first to show how much heart and soul they bring to our crazy race.

I'm proud of our stars every day.

Big Bully Parkinson's Disease Picking on More People

Like Linda Ronstadt!...  Seriously?!  How cruel can this stinking Parkinson's Disease be?  Does it really have to go and steal away a voice like Linda Ronstadt's?  Sometimes, it seriously just pisses me off!

What a bully!  Right?!  "Why you gotta be so mean" Parkinson's Disease?  (to use the words of Taylor Swift).  You've already diminished a strong man like Mohammad Ali.  You've robbed Janet Reno of public service.  And you continue to snatch the youth of those like Michael J. Fox AND my "hotthubby" Dan.

Enough already!

Sure. I get it Michael.  This 48-year-old-grey-haired-PD-bloggin-hott-mama-of-four is "Looking Up" from the depths of PD.  I understand.  I get the premise and appreciate the "blessings" that come with a chronic illness like Parkinson's Disease.  Believe me.  My knees know.

But come on already!  This week's news that Linda Ronstadt has Parkinson's too just magnifies the sheer unjustice and utter unfairness of how a chronic neurodegenerative illness sneaks up on a person and robs them of the very thing they hold dear.

Leave it to a bully to target the unsuspecting.  Come on.  Billy Graham!?  Really!  What did he do to deserve being hit by a bully like Parkinson's Disease!

Come on and hurry up Michael J. Fox Foundation and find us a cure!

The alternative stinks!

"Yet those who wait for the LORD Will gain new strength; 

They will mount up with wings like eagles, They will run and not get tired, 

They will walk and not become weary."  Isiah 40:31

.