On August 7, 2000, Rick was diagnosed with Parkinson's Disease at the age of 34. On Monday September 26, 2011 Rick will be having Deep Brain Stimulation Surgery for the treatment of Parkinson's disease. This blog is my attempt to communicate our journey through the surgery, recovery & restoration! Rick is not a man of many words. He has many who love him, and therefore, he's okay with me sharing with all of you!
We're actually still in the hospital as I write this update! Things have gone so well, we're ready to go home now at 9 in the morning, but we have to wait for Rick to have yet one more hospital meal! Those of you who know Rick well know that he will not pass up on ANY food.
5:30am ready to get admitted.
Everything went extremely well yesterday. We are so thankful for God's protection and his sovereign plan for our lives. Having confidence in Him and not just the doctors truly provides a level of peace that makes facing something like brain surgery so much easier!
We were really surprised in pre-op when his stimulator that was implanted back in October was shut off. IMMEDIATELY his tremor started, and it actually was quite violent at the start. It was a dramatic moment that made us both realize how much it had been helping. Since the first stimulator was implanted and programmed it hasn't been as perfect as we'd like, so seeing this was a huge eye opener.
Rick all smiles with his ice pack on his head!
The time flew by for me while Rick was in surgery, thanks to great friends who kept me company and distracted me! By the time I got to see Rick we were on our way to his room. He had ZERO pain, and other than the ice pack he really enjoyed on his head, he didn't need anything for his head! He was quite alert this time for a few hours and was able to successful enjoy a meal without falling asleep mid bite!
Everything has gone quick & easy this morning. The staff has been terrific and everyone has made us feel so special. I'm not sure that they get very many DBS patients as happy & easy as Rick! We'll be going home this afternoon and then coming back tomorrow to have the stimulator implanted on his right side.
Neither of us looking our best, but happy to be together!
I was able to capture a video this morning of Rick after his MRI. The stimulator implanted in October had to be shut off before he could have his MRI. This is about 2 minutes long and it's Rick trying to turn the stimulator back on. He's never done it before, so it doesn't turn on until I walk over and actually turn it back on for him. It's really remarkable. His right side is most visible in this video. He's also on medication when this was taken so it's not as dramatic as yesterday morning. I think you'll enjoy this.
Rick & I want to thank everyone for their love & support. We continue to be blown away by the love that we fell from our friends near & far. It's hard not to feel special when you have so many wonderful people in your corner. We love and appreciate all of you so very, very much!
It's been an interesting 8 weeks since we started this journey for Rick. Rick has recovered extremely well, and his hair is just about starting to curl up!
Monday marks the beginning of the last step in this surgical process. Rick will being undergoing the same exact surgery he had in October. This time on his right brain for the left side of his body. Feels a little different this time as we really know what to expect. Instead of the two surgeries (one for inserting the probe & the other for the stimulator in his chest) being a week apart, this time they will be two days apart. He'll stay overnight at CDH (Central Dupage Hospital) on Monday night, get discharged sometime on Tuesday, and then we'll be back on Wednesday for the final surgery. Seems silly to do that, but Medicare has their rules, and without Medicare, its a $140,000 or so procedure! We'll gladly go home and come back again!
On the plane to Salt Lake City
Sporting his Michigan beenie from Erik Deuel
Rick's been really doing great. Just a few weeks after surgery we traveled to Park City, Utah. He really was able to enjoy the trip and being able to relax in an airplane was a big deal for him! Almost 2 weeks ago he was cleared for completely normal activity. You can bet the first thing he did was get back to his full workouts. He only had a 2 week window to really workout again before the 6 week "sentence" of no rigorous activity got put back on him! He's really noticing that his right side (the side with the stimulator) has gotten significantly stronger.
Out on the deck in Park City, UT
It's not been smooth sailing these last few weeks. The programming has been more complicated than we thought. Mostly because he still has needed to be on medication to treat his left side. The challenge is that his brain can't receive the medication just on one side...it goes to the entire brain. One side needs it more than the other, and well, it it brain surgery after all!
At our company HQ in SLC
We both are super excited about where this journey is leading. We continue to fix our eyes not on what we see, but on what's to come. I haven't written much mostly because I'm working on our business plan for 2012. Rick wants to be a major contributor to what we are doing, so we've been focusing on our success rather than Parkinson's and brain surgery. It's been nice for both of us, and this last surgery has almost snuck up on us!
Day 2 of full activity clearance and he's out running interval sprints!
I'll be sure to update everyone on how Monday goes. With God on our side, and Rick being such a rockstar, I'm completely confident that it will be smooth sailing once again!
Can you believe that our alarm didn't go off this morning??? Seriously. We have been so excited about this day and we ALMOST overslept! I set the time, made sure the radio station and volume were right, but I never actually turned the alarm ON! By the Grace of God we made it out the door in 15 minutes and only ended up leaving 1 minute past the time we had originally planned on leaving! Thank God Rick had been up lying there...wondering what time it was!!!
Dr. Rezak getting ready to be "brilliant"
Programming went faster & simpler than either of us thought it would. The probe that was inserted into Rick's brain has 4 electrodes on it, and each one had to be tested. They basically adjusted voltage levels to see which electrode and at what voltage gave the best results. Sometimes one electrode is in the sweet spot, sometimes its a couple. All 4 of Rick's produced results, and all of them at low voltages! Low voltage is good. It's a lot like getting good results with low amounts of medication. In this case, less is more!
It was super neat to watch. A couple of times the voltage was too high and it caused Rick to have slurred speech or he got dizzy. They finally found the best settings for him and before I knew it, he was programmed and we were done. It actually caught me off guard, so my video's aren't exactly what I had hoped for. I guess I thought there'd be more time in the actual appointment to take them!
When you watch the video, watch the arm closest to our nurse Allison. The hand closest to the camera is his left side, which has not been treated yet, and was the least severe with symptoms. Today's programming is just for the symptoms of his right side.
So far Rick has said he feels so much more relaxed. His feet feel better. They had felt swollen and full of lactic acid. He had difficulty bending them or straightening them, so he's feeling great with that! I noticed a change in his posture, he's more upright and moving smoother. He felt a little crooked as one of his sides is "fixed" and the other isn't!
The tricky part for the next month & a half is his medications. Rick isn't a fan of medication, so anything to decrease or eliminate meds is a good thing! He's already been taken off one med, and another decreased significantly. His left side still needs to be treated, and his right side doesn't. Medication goes to the entire brain so it's not like we can tell it to go to just one side. The result may mean increased dyskensia for a short time until his other side has the device implanted to fix his left body.
As we left the hospital this morning we realized we're half way there. This is the most significant side for him, so it's going to be amazing when reality settles in that his right side is constantly still. We have schedule the next surgery for December 12th. That's when we start the process all over again, this time right brain = left body. I'm thinking Rick will be all programmed and ready to go by his 46th birthday in January!
Rick showing off his new remote control!
The jokes have started about the 6 million dollar man (the total surgery cost isn't that much, but it's a whopper), Domo arigato Mr. Roboto, does he come with an on and off button, etc! We were given the $5k remote control for his stimulator today and told NOT to lose it! I've been teasing Rick that he better not get too out of line or I'll turn him off! We've always maintained a good sense of humor throughout the last 11 years, but there is definitely a lightness about us that is just so much fun!
We decided that we were going to trust the direction God had for us throughout this and believe His promises 100%. After all, either its true or it isn't. At least that's how I see it. I have to say, that decision has been so important for us. It was like standing on a cliff and deciding to just jump. We jumped, and haven't looked back. We've stood on the promises in God's word and literally put them to the test. Daily, we see the blessings pour out. This is just one of them!
The BEST is yet to come! - RPOJC
With all our love, In Jesus Name!
Traci & Rick
Tuesday, November 1, 2011
So tomorrow is the day we've been waiting for! All the tests, surgeries, waiting. Tomorrow Rick gets his DBS stimulator programmed & turned on!
Some of you may be wondering what I'm talking about. You see, the surgery was just to implant the probe & the device. The real excitement doesn't start until the device actually gets turned on, and up until now, it's been off. Sitting in Rick's chest just waiting to be turned on and do it thing!
Rick the morning of the first surgery on October 10.
The first surgery was on October 10th. That's where the probe was implanted into the left side of Rick's brain. Left brain controls the right side of the body. Everything went incredibly well. Rick & I were expecting big things from this day, and we knew the favor of God was with us. There were some pretty smart people in that surgery! A neurologist, a neuro-surgeon, a neuro-physiologist (whose job it was to listen to the specific brain cells firing - they literally could hear the hand, finger, eye, etc. cells fire!!!) just to name a few! The 6 hour surgery only took 3 1/2 hours. I knew things went well when I saw Rick's neurologist, Dr. Rezak & his nurse, Allison, walking towards me with huge grins on their faces!
Rick, Dr. Rezak, & Allison, getting ready to take Rick into surgery!
Earlier that morning when Rick was in pre-op they had told me that the tremor that he has in his tongue probably wouldn't go away with this first surgery, that once he had the DBS on his right brain for his left body, only then it would stop. Wouldn't you know it....when they were testing Rick for the correct placement of the probe, his tongue tremor STOPPED! Dr. Masnyk, the neurosurgeon, said that things went better than textbook. Dr. Rezak was thrilled at the results they achieved when the stimulator was turned on! It was exactly what we had believed for!
The first time I got to speak to Rick after the surgery.
Rick recovered extremely well, and the very next day we were out of the hospital. He had very little pain from the first surgery and by 48 hours after the surgery we were out walking a mile in the neighborhood! We had been told that he may experience a phenomenon that is a false sense of being "better" for a few days, and Rick absolutely had that. It's as though "tickling" the brain interrupts the PD signals for a short period of time. It was a neat glimpse of what we are hoping to see after his device gets turned on!
The morning after his first surgery! Feeling great and ready to go!
The following Monday, October 17, we were back to the hospital again for part 2 of the surgery. This time it was just a "simple" outpatient surgery to implant the stimulator in Rick's chest, connect the lead to the probe, and the lead to the stimulator. This was a quick 1 1/2 procedure and we were home before dinner. Rick had a bit more pain this time as the "tunneling" of the lead down his neck was a vigorous move (the doctors words, not mine!). The area where they put in the lead was very tender, but once again, Rick was feeling good the next day.
This past Monday we went back to see the surgeon and have the stitches on Rick's head removed. The nurse was blown away by how much Rick's hair had grown back and how fast he was healing! While we were waiting Rick let me take a quick video of him. Normally he wouldn't be very comfortable with this but he knows this is about to go away. We want those of you who don't see him every day see the difference once the stimulator gets turned on. This video is short, but this is to give you an idea of his tremor 40 minutes AFTER he's taken his medication. The second video is a little older & is to try and give you an idea of what his dyskensia or as he likes to call it his "silly walk" looks like. I can't wait to post videos of him after the stimulator is programmed!
After the second surgery! They only shaved half of his head!
Rick got several nice hats as get well gifts!
Rick & his two nephews, Cory & Chris. Not too often all 3 of them have no hair!
Rick's Neurologist, Dr. Rezak made the list of top U.S Neurologists!
The last few weeks have been extremely exciting for us and we've had a countdown running til the day the device is turned on permanently. If you're wondering why we had to wait, it's because they need the brain to "settle down" after the surgery and get back to normal so that they can have the optimal programming effects. So tomorrow morning, we will spend 3 hours with Dr. Rezak doing the initial programming of the stimulator in Rick's chest. We're expecting that things will be great the first time out, as sometimes it can take a series of appointments to "tweak" things to get the settings right!
Thursday night we will experience our first time traveling and going through security with the device in Rick's chest as we're heading off for a weekend in Park City, UT for our business. No, we won't be skiing. Mostly because the resorts aren't open yet, but also because Rick's not cleared for vigorous activity for a few more weeks. We're thrilled at the prospect of getting back out to ski again. You can bet this won't be our last trip to Utah!
Thank you to everyone who has been so supportive and encouraging to us through this process. You're prayers and well wishes have meant the world to us. I spent more than an hour reading to Rick all of the texts, emails & Facebook notes you all sent us during his first surgery. We feel so blessed to have such wonderful friends and family. Stay tuned because this journey is just getting started!
Well tomorrow is the big day! Its funny how for so long we weren't open to this surgery, but as soon as we were ready, we were ready NOW!!! Then having it rescheduled 4 times....it felt like it was NEVER going to happen!!!
Friday we got the call with the details for tomorrow's surgery and at first it wasn't what Rick wanted to hear. They originally were going to have Rick be the second surgery of the day, which would've meant that the surgeon would have already operated for 8 hours before he operated on Rick. In Rick's words: "They don't even let truck drivers drive for 10 hours straight...I don't want a surgeon operating on my brain after 14 hours of surgery!!!" Plus, the second surgery would mean that Rick would have to go all day with no medication or food. And if you know Rick, you're probably not sure what's worse!!! But, Psalm 37:4 says: "Delight yourself also in the LORD, And He shall give you the desires of your heart." A phone call to Allison, our super nurse, and viola, Rick's surgery was moved to the first of the day!!!
So tomorrow morning we report to Central Dupage Hospital in Winfield, IL at 5:30 am. Rick is scheduled for a 6 hour surgery starting at 7:30am. He'll be kept overnight and Tuesday morning they'll do an MRI to make sure the probe is inserted properly, feed him lunch, and then send him home! Amazing how quick!
I probably won't know much until 2pm or so, and I promise to update all of you as soon as possible! We are so grateful for all of the support and love we've received from all of you!
This image was shown at our church this morning while our Pastor prayed for a successful outcome and a friend also shared it on Facebook! We know Jesus will be guiding Dr. Masnyk's hands tomorrow!
