The Incredible Parkie Pet

HERSHEY!  Our chocolate lab is featured in a short "Incredibles" film on today's column published on healthunion.net!  Here is the link...

https://parkinsonsdisease.net/caregiver/comfort-pets-super-heroes/

I want to hear about your special fury friend too.

Nightmare on Parkinson's Street

I kinda don't like reading this article; makes my stomach upset.  But here is the link to today's column posted on ParkinsonsDisease.net.  Check it out...if you want..., click below:

Nightmare on Parkinson's Street

(Thanks for reading.  And, please share, maybe someone will sleep a little better tonight!"

Your Turn! We're Counting "Blessings"

parkinsonsdisease.net graphic of Pap singing "Showers of Blessings"

I know. 

Sometimes we need to look really hard, right?

That's why I am excited to share my last article from ParkinsonsDisease.net.  Check out the super cool picture of my Pap singing that old time song "Showers of Blessings" then click on the link to connect both to the article and, a storm of blessings and connections waiting for you.
Parkinson's Disease: A Blessing in Disguise

Morgan County, WV, Proclaims April 2018 as #Parkinsons Awareness Month

Joining the nation in an effort to raise awareness for those living with Parkinson's Disease, Morgan County, WV, proclaims April 2018 as "Parkinson's Awareness Month"!

Thank you to the residents of this county for supporting the Hott Family!  As we personally advocate for federal funding for research with the Michael J Fox Foundation for Parkinson's Research and the Parkinson's Disease Foundation, Dan and I are happy to share our community's Proclaimation of support!  Thank you Joel Tuttle, President of the Morgan County Commission, for placing this on your busy agenda! 

Dan and I with Morgan County's Proclamation

The proclamation looks like this:

Pretty cool, right!?!  I can't wait to show the students in Positive Actions this beautiful example of a community that cares! 

Stay tuned for future pictures of Dan with our County Commissioners!  (I promise not to talk too much and miss you next time!)

Small Town Advocate for Big Time Issue

Small Town Advocate for Big Time Issue

Sharing the above article that published on Health Union's ParkinsonsDisease.net while Violet and I are attending the Parkinson's Policy Forum in Washington, DC.  Today, March 21st, is Parkinson's Advocacy Day where 300 people from across the country will contact our Members in Congress to fund critical research for NIH and DOD. 

More cool news to come!

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!

Parkinson's Advocacy is All in the Family

As Dannypoo and I prepare to return to the Parkinson's Policy Forum for Advocacy Day March 21st with Violet and Levi, I am excited to share this feature on the Michael J. Fox Foundation's blog:

Advocacy Is All in the Family

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).

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!

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!

Moving Day Chicago Meets W.Va. Team Co-Captain...ME!

Hello,

My name is Angie Hott.  My husband, Dan, has Parkinson's Disease.  We have four children and live in rural West Virginia.

I am tickled to be an honorary co-captain for Team Martini Shakers participating in the upcoming Moving Day, Chicago.

Like the picture I chose to tag?  I.LOVE.IT!


The reason I selected this picture is because I strongly feel that this represents how with God's love, a positive attitude, and some pretty awesome neurologists, we can kick this stinkin' thing called Parkinson's Disease!

You see, when Dan was diagnosed in 2008, one of the crazy things that scared me was how his symptoms would progress.  At the time, our boys were just 2 and 3 years old.  I worried if he would be able to dance at our two daughter's weddings.

Well, here he is at Caity's wedding on June 8, 2014...six years since his diagnosis.  He not only danced at the reception; but he walked Caity to a beautiful alter of sand and sea before our closest friends and family.

Although we will not be in Chicago in a few days to walk with you, we will be there in spirit!  For what we do today to help bring awareness to Parkinson's Disease will have Dan dancing at Violet's wedding next!

She's only 14 now...so let's get busy!!!!

And, so you know this is a nation wide event, check out the National Parkinson's Foundation spokesperson, Katie Couric, she is also involved because her father suffered from Parkinson's Disease.

To donate to Parkinson's research and learn more about Moving Day, see here:  Team Martini Shakers  Then click on "Angie Hott" (in blue) if you feel so moved to donate.  If not, that's fine too...thanks for spending a little time on this site and send it along by sharing!

Now,...here is the remainder of NPF's Moving Day info:

I am participating in the Moving Day Chicago walk, benefiting the National Parkinson Foundation on October 19, 2014.

The event will take place at the Grove 2 at Lincoln Park and will be a fun-filled, family-friendly event for all ages and abilities. We will be able to enjoy a variety of movement activities yoga, dance, Pilates, Tai Chi, stretching and much more and celebrate the importance of movement in our lives.

Please consider being a part of my team or sponsoring me, and I encourage you to get your friends, family and coworkers involved.

Why Get Involved

The National Parkinson Foundation (NPF) continues to bring help and hope to the estimated one million people in the United States, four to six million worldwide, who are living with Parkinson’s disease. NPF is the only organization with a singular focus on improving the quality of care in Parkinson’s disease. NPF programs reach more than one million people a year through its network of 39 chapters, 43 Centers of Excellence and 900 support groups. Since 1982, NPF has funded more than $180 million in care, research and support services.

Thank you for helping me reach my fundraising goal to support the vital work of the National Parkinson Foundation.