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!"

Hershey...the Wonder Dog is Featured in Health Union Article

Kinda excited about this article!

It's about our Chocolate Lab, Hershey!....Check it out here, and please do share on the article about your special pet too!

(click here:)  "Parkie Pets"

love,
a

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!)

"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).