The inconveniences of Parkinson's.

Parkinson's is inconvenient.  It changes the way you do things. 

Take traveling for example.  Rick & I like to travel....a lot!  Because of Parkinson's we have to take into consideration what time of days the flights are, if it's too early, it's hard on him.  Will his med's be "kicked in" or will it being during an "off" time.  If security is too crowded, getting shoes on and off, things out of pockets, and just the entire process creates tons of anxiety.  Then there's where the inconvenience of sitting on a plane.  Tight spaces, having to get up and go to the bathroom....well none of that's fun for anyone on a plane, but imagine you can't maneuver in and out of tight spaces, and the thought of having to try and stumble around in a very crowded, busy airport gives you anxiety you've never had before.  Needless to say, Rick doesn't love traveling like he used to.  But he does it, usually for me. 

As I write this I'm sitting in Salt Lake City airport on a really long lay over because this time of day was a "convenient" time for Rick to travel.  We had a major conference for our business this past weekend in Las Vegas, and it was important to both of us that Rick come.  You see, if it wasn't for this business, there's no way we'd be able to put Rick's needs first on such a constant basis.  We're incredibly grateful for it.  Grateful that we have the flexibility to drop everything and go to the hospital for tests, to spend pretty much every single day together, and to travel to places we might have never had the chance to go before. 

When we found out that Rick's surgery was moved up to September 26, just about 12 hours after we were scheduled to land back in Chicago, Parkinson's got even more inconvenient.  We decided he'd stay home as the stress of travel itself was hard on him, never mind doing it knowing you could miss a flight and possibly miss your BRAIN SURGERY.  Once again, Parkinson's changed things for us, and we made the necessary arrangements so I could go without Rick. 

Friday morning as we were talking and planning for Monday's surgery, Rick got a call from Dr. Rezak's office.  The surgery wasn't going to happen on Monday.  I thought it was a joke.  The mental preparation, the on-going "inconveniences", the excitement of getting this process underway....I couldn't get my mind wrapped around it.  I seriously thought Rick was joking when he called me to tell me.  He can really pull off a joke.  This isn't a joke.  Sadly, Dr. Rezak has had a death in the family, and therefore, he can't be in the O.R. tomorrow.  Kind of important to have him there.  There aren't any substitutions.  No back ups.  Nothing we can do.  We of course are saddened for Dr. Rezak's family's loss. 

The emotional up and downs and the overall inconveniences of all of it are a part of life for us.  Nothing we can do, but keep a good attitude and trust that God has a perfect plan for us.  I saw a quote the other day that said that the only disability in life is a bad attitude. Rick & I both aren't going to let this one blip get us down.  It's just a detour.  Romans 8:28 says that "and we know that all things work together for good to them that love God, to them who are called according to His purpose.     As our Pastor reminded me on Friday by text, Trust is not trust unless it is tested by adversity.   So powerful.

We have a tentative date now of October 10.  All of Rick's pre-surgical tests will be 32 days old.  We're waiting on approval that being okay.  Typically after 30 days, they make you complete all the tests again.  I'm confident it will all work out.

The BEST is yet to come!  - RPOJC

With all our love, In Jesus Name!


Traci & Rick

New Surgery Date & What's Going to Happen!

Rick and his Neurosurgeon, Dr. Taras Masnyk

First things first, Rick's surgery date has been changed.  It's now in less than ONE WEEK!  It's now scheduled for Monday, September 26, most likely at 7:00 am.   12 hours after we were scheduled to come home from Las Vegas!  Needless to say, Rick will not be joining me for this years convention! 

The last couple of weeks have been fun filled days with doctor appointments galore!  It's interesting how many pre-tests are required before a person is cleared for Brain Surgery!  I suppose that's important, right?  What's so interesting is that even though this is brain surgery, and complicated, it's actually a fairly routine surgery.  The surgeon, Dr. Masnyk, does 2-3 of these surgeries per week.  DBS has been used to treat PD since 2002, and since 1997 to treat tremors.  It is now becoming a very popular option for the newly diagnosed PD patient.  It wasn't an option for us at the beginning, but knowing what I know now, I would encourage anyone who was newly diagnosed to seriously look at this option.  

We met with Dr. Masnyk at the beginning of September to discuss the actual surgery and what was going to happen, what Rick could or couldn't do afterwards, and really what to expect.  It was an hour that was a bit more than we expected.  Dr. Masnyk was very detailed about the entire procedure and did an excellent job answering the thousand questions I had!  One of the things that determines the success of this surgery is the precise placement of the electrodes into the brain.  This is a picture of the electrode that they'll place deep within Rick's brain, near the globus pallidus, an area that controls the coordination of movement.  The electrode is actually very soft and pliable, not too different from "al-dente" spaghetti! 

The electrode similar to the one that will be implanted in Rick's brain.

The morning of Rick's surgery they will put him in a halo type head cage, shave his head, and then there is a device that will scan his brain and will be overlaid with the results from the IMRI, a cutting edge new MRI that is being used by Central Dupage Neurosciences Institute to better place the electodes.  You can read more about that here Interoperative MRI at CDH.  Rick will be under a light anesthesia during the initial part of the surgery.  While they make the small hole in his skull and initially place the electrode.  What's amazing to me is that the most amount of blood he's expected to loose is 3 tablespoons!  

This is a life size model of the brain, and this is a very close representation of where the electrode will be located.

Then the fun begins.  Rick will be woken up to be an active participant in the correct placement of the electrode.  Dr. Rezak will be in the OR with him and will be performing a series of clinical tests to ensure that they got the optimal location to place the electrode!  There's a piece of me that wants to be in there with him, and another that's glad I won't be!!!  Once they have it right then they will bolt the end of the electrode lead to his skull.  He'll have a bump there from now on, but once those curls come back there will be no way you could tell!

The lead connecting the electrode to the stimulator

Normally after that, they'd put him under anesthesia to complete the surgery, but thanks to Medicare, they require it be done in two separate surgeries.  So about a week after the electrode is implanted, the rest of the procedure will be done in an outpatient surgery.  Dr. Masnyk will reopen the incision on Rick's head, and then insert a lead to the piece that is bolted to Rick's skull.  The lead will be implanted down the back of his neck and into his clavicle.  From there the stimulator will be implanted and connected.

The stimulator, with lead attached that will be implanted in his clavicle

The stimulator is basically a pacemaker for the brain.  It's battery operated and depending upon how much "juice" Rick needs will determine how often it needs to be surgically replaced.  About a month after the stimulator is implanted, we'll return to Dr. Rezak's office to have it turned on and adjusted.  That's when the real excitement begins! 

 We found this awesome video on YouTube of a man on his one year anniversary of his DBS surgery. Now he's older and not in nearly as great physical shape as Rick, but watch it and you'll see why we're expecting a 100% recovery!  WARNING:  If you REALLY love my husband...this might make you over the top excited, or teary! 

 

Finally for those of you who really are interested in the actual surgery, there is a great video by the Mayfield Clinic of an actual surgery.  It's not exactly how it will go for Rick, but it's pretty close.  If you're interested in that, you can watch it here  Mayfield Clinic DBS Surgery.  WARNING:  It's an ACTUAL DBS surgery.  

I want to thank all of your for your continued prayers, love and support.  It means the world to us.  Rick is doing incredible and is very eager for Monday to come!  His attitude is tremendous, and his faith in God's promises are rock solid.  He is leaning on this scripture from The Message Bible: Jeremiah 33:7

"I'll restore everything that was lost to Judah (Rick) and Jerusalem (Traci). I'll build everything back as good as new."

The BEST is yet to come!  - RPOJC

With all our love, In Jesus Name!


Traci & Rick

You had us at DECADES!

Rick & the amazing Dr. Rezak

Rick & Allison, nurse extraodinaire!

From the start of working with our neurologist, Dr. Michael Rezak, it's been a complicated dance between doctor & patient.  Well, let me back up....before PD, Rick didn't like to even take an aspirin for a headache.  Get him on a series of medication to treat PD, well, let's just say he wasn't enthusiastic!

Dr. Rezak has been a tremendous blessing to us since we started working with him in 2003/2004.

Psalm 118:7a says:  "The LORD is for me among those who help me"  

That hasn't meant that Rick has always gone along with what Dr. Rezak wanted!  He started talking to us about the possibility of Deep Brain Stimulation (DBS) more than a year ago.  As usual, we weren't anxious to jump on the plan.  We always thought of DBS as something that would be done as a last resort.  When Rick first was diagnosed there was lots of press about the bad brain surgery Michael J. Fox had, a thalamotomy, where they actually burn scar tissue in part of your brain.  Needless to say, we had a bad impression of what brain surgery would mean.  

This past spring when Rick's dyskinesia started to get progressively worse, and Dr. Rezak tried, unsuccessfully, to treat it with medication, he started to discuss the option of DBS AGAIN!  We had read a bit about it, but truly, really had never wanted to consider BRAIN SURGERY!!!  This time Dr. Rezak patiently explained to us the benefits of DBS, and how over the last almost 10 years, it has been a gold standard of treatment, even in early stages of Parkinson's.  When he started describing patients who had dramatically reduced their symptoms and medications, and how this could be something that perhaps could last for DECADES, he had us at DECADES! 

We sought the Lord for guidance on this, talked about it, looked it up, heck, even went to our very first ever PD support group to meet people who had DBS surgery!  The support group was interesting.  One person who had the DBS wasn't doing well at all, and another was doing great.  We literally saw the whole spectrum that night, and learned some valuable things.  I thank God that there were more than just the one person who wasn't doing well, because that would've made this entire thing not very appealing.  What we learned that night is that waiting too long before electing to have the surgery could result in less of a dramatic improvement or outcome.  In spite of that, what I read, and just the thought of BRAIN SURGERY, we had peace.   There was Phillipians 4:7 again!  " and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus."

It's interesting that after all this time of us not wanting to consider this surgery, as soon as we felt that peace, and made the decision, we were ready now!!!    It's astonishing to see what happens once you make a decision to move forward.  The things we started to think about and dream about were thrilling!  We're firm believers in the biblical principle of "calling those things that aren't as though they were" but sometimes it's challenging when you're staring PD straight in the face on a regular basis.   

So let me tell you what DBS is expected to do for Rick.  
It treats (I prefer to say it eliminates):

• Stiffness
• Slowness (I don't think it will change how incredibly SLOW he eats!)
• Tremors
• Dyskinsesia & Dystonia
• The "on/off" fluctuations he has with his medications.  What happens now is that he gets "window's" of time where the medication is working great, but then it begins to wear off, and then takes a while before the next dose kicks in.  It basically gives him a good couple of hours every couple of hours.
• It may also allow a significant reduction in medication.     

How awesome is that???  
One of Rick's favorite verses is Luke 1:37 ³⁷ For with God nothing will be impossible.”  
Some patients have 80-90% improvement.  I'm believing for 100%!  Why not!  We hope you'll believe for that with us!  In fact, so many of you have been so incredible in your love, support and offer of prayers, it's just overwhelming!  If we could ask for something specific when you remember to pray for us, is to pray for that...complete restoration, and 100% improvement. 

Until next time....

The BEST is yet to come!  - RPOJC


With all our love, In Jesus Name!


Traci & Rick

26 days....but who's counting

Rick is having BRAIN SURGERY.  On October 3, Rick is having BRAIN SURGERY.  Wow.  I never thought I'd say that.  How many times do you joke that something isn't that big of a deal..."it's not like its BRAIN SURGERY or anything....."  We've joked like that a lot over the years. 


For 11 years now, Rick has had to deal with his body literally rebelling on him.  On my 29th birthday, Rick was diagnosed with Parkinson's disease (PD) at the age of 34.  Shocked is an understatement.

By God's grace, the last several years, Rick has managed well with exercise, diet, nutrition, medication and most importantly prayers.  Rick has believed for a very long time that this was not going to be permanent.  In the last few years, for both of us, our faith in Jesus Christ has literally held us up day by day.  It's one of the few things that for me has been a powerful "side effect" of Parkinson's.  If I wasn't literally driven to my knees in desperation, I can't imagine where we'd be today.  The Blood of Christ has freed us from fear, anxiety, hopelessness, and all the other awful things that come with PD.

So how did we end up here?  In January 2010, Rick had ankle surgery to repair a torn tendon from the excessive amount of tennis he had been playing (yes, he was still actively playing tennis...one of the few sports his body didn't rebel against).  As he recovered we starting noticing a strange limp.  I assumed that it was from him overcompensating from the other ankle.  The limp progressively got worse and we realized it was more than that.  One of the downsides to PD medication is that over time, it causes side effects, and one of them is called "dyskinesia" or "dystonia".  It's super annoying to Rick.  It's in his leg.   What it does is cause his toes to curl up and then he has no control over the movements that start.  When he walks it literally looks like his knee is going to hit his chest.  It's uncomfortable & embarrassing.  He's done with it.

We went on a medication journey this spring to try and see if adjusting medications could fix this.  It was not a pleasant experience for Rick.  They lowered his medication to see if that would help, but all that did was leave him unable to function.  After many months of "tweaking" medications, he's at a high functioning level, but the "dyskinesia" has progressively gotten worse.  We've been praying about this for over a year.

Philippians 4:6-7 (NKJV) says: 
⁶ Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; ⁷ and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

We've done what verse 6 says.....and we've received what verse 7 says!  


So...my plan with this blog is to explain to all of you what is coming, what we're expecting, experiencing, and where we put our trust. 

The BEST is yet to come!  - RPOJC


With all our love, In Jesus Name!


Traci & Rick