2020

“It’s hard to write a story when you know the ending might not be a happy one.“

Before COVID-19

Coming home from Jackson Hole, Wyoming Feb 2020

It has been a while since I have posted. Towards the end of 2019, I truly had high hopes for 2020. The reason being is that Michael was scheduled to do DBS surgery February 2020. However, he needed an MRI before his surgery date and we weren’t able to get it on time and with school in process we postponed to May 5, 2020.

What is DBS Surgery?

Deep brain stimulation (DBS) is a surgery to implant a device that sends electrical signals to brain areas responsible for body movement. Electrodes are placed deep in the brain and are connected to a stimulator device. Similar to a heart pacemaker, a neurostimulator uses electric pulses to regulate brain activity. In other words, this what we thought would be the closest to a cure and to avoid medication.

DBS Postponed

As you may know, beginning of April the COVID-19 pandemic ignited and quarantine regulations were mandated. Due to the virus, Michael’s surgery was postponed once again. During this downtime, we turned to God and really prayed about the surgery and it almost felt as though these were signs. I should add that Michael’s brother who is my age has Parkinson’s too. He recently had DBS and the outcome wasn’t as great as we were promised. Therefore, that also made us reconsider. The possibilities that DBS wouldn’t work were so much higher and we developed so much doubt. Then something weird happened. Through Gods graces, we had Dr. Shankle reach out to us. Located within the Hoag Pickup Family Neuroscience Institute in Newport Beach, CA, the Shankle Clinic makes use of Dr. Shankle’s extensive experience related to Alzheimer’s disease and related disorders to deliver unparalleled results in an otherwise frustrating area of medicine. The practice makes use of specific genetic testing and conservative, holistic treatment protocols that have proven effective. In other words, Dr. Shankle is a witch doctor and is almost impossible to gain an appointment with. After 8 months of waiting, we received a call from Dr. Shankle and immediately met with his Nurse practitioner via zoom.

Dr. Shankle

With the halt on DBS, we really invested our spirits into Dr. Shankle. However, after the consultation we didn’t hear much from him because of the pandemic. About a week ago, Michael received a bill from the clinic, which resulted in 2,500 dollars in fees. Unfortunately, Michael’s insurance was not able to cover so now we are stuck paying out of pocket….for a zoom consultation.

Where are we now?

The day we got the bill, I told Michael that health was priceless and we would figure out a way to pay it back through a payment plan. This past Friday we spoke with the billing office at the Shankle clinic and they were persistent that all of Michael’s following appointments would result in similar and or much greater fee’s, which is extremely discouraging. I have not written much or spoken to anyone about Michael’s Parkinson’s lately because it’s hard to write a story when you know the ending might not be a happy one.

This past Friday, I, in particular have hit a very vulnerable state that I cannot really explain. It’s the kind of vulnerability that no one can relate to. What makes things harder is that I cannot express this vulnerability much to Michael as he is the one actually suffering with the disease and I have always promised to be his motivator and support system. Unfortunately, the feeling of not having money to afford a great doctor and running out of ideas to cure and or maintain symptoms feels like defeat.

Where to now?

Today, Michael is still resisting medication and we are keeping our minds open to DBS as we seek a second opinion from UCLA medical hospital, once Michael’s insurance is approved. We both have been trying to stay positive and open minded about his Parkinson’s. We are lucky to have each other and our workout group. As you may not know, Michael and I workout 7 days a week through a High Intensity Workout regimen at Grampa’s Boxing Gym with Coach Vaughn. Working out and a high protein diet has really helped. Not only that, I have tried my best to keep sugars away from Michael, especially soda. Exercise and Diet may not be the cure, but it is enough for Michael right now and our only option at this point. I apologize that this posting isn’t as happy and dandy as usual, but this is our reality. Sometimes it is about the Parkinson’s. Any suggestions or medical advice is helpful and much appreciated.

Xoxo T

Our Anniversary

September 29, 2018

As you may know, Michael is the sweetest guy on this planet. Literally, our therapist told me, “he’s a unicorn.” He loves adventure and planning these spontaneous trips. Our two year anniversary was coming up and I really wanted to reciprocate. Michael has mentioned several times about Selänne’s steakhouse in Laguna Beach. If you didn’t know Michael’s favorite player is Teemu Selänne, he holds numerous team scoring records for the Anaheim Ducks. Selänne finished the playoffs with 15 points in 21 games, and after 14 NHL seasons, Selänne raised the Stanley Cup with his teammates after defeating the Senators in five games. Anyway long story short I was able to get a reservation at Selanne’s and couldn’t wait to surprise him mostly because he’s never had a Tomahawk steak and so I couldn’t wait to see his face when he tasted it.

Okay so in the midst of booking reservations and such, I get a call from Wendy with the Anaheim Ducks. A couple months before our anniversary, I nominated Michael to be the 21st Duck. He mentioned it to me, but never really thought anything of it. Well, I get a week before our Anniversary and Wendy wanted to interview me over the phone to discuss a little more about Michael and his recent diagnosis with Parkinson’s. Let me first explain what the 21st Duck is. Basically, the Anaheim Ducks annually pick a standout fan to become the “21st Duck”. The title is a way to honor a fan who embodies characteristics such as great perseverance, character, courage, inspiration or a fan who is making significant contributions to their community. As mentioned, Michael had been newly diagnosed and is a die hard Duck’s fan and at the time was employed at the Anaheim Rinks coaching kids hockey through the Learn to Play program. Therefore, I thought well he falls into the category might as well nominate him.

Well tying that back in to when Wendy wanted to interview me, I really was surprised about the call. As I am answering questions about Michael and his love for Hockey, she asks me if he would be okay with all the spotlight the 21st Duck journey would bring. I thought to myself, well he told me about this so he better. She proceeds to tell me that they are still reviewing nominations and will get back to me. A couple days before our anniversary she emails me that Michael was selected to be the 21st Duck.

On September 29, 2019, Michael was scheduled to work in the morning so we could do dinner in the evening. Little did he know the Anaheim Ducks team would be surprising him on his shift. I went to work with him that morning because sometimes he invites me to go watch him coach so he did not really think anything of it. Well, we get to the rinks and he is a huge fan so he notices the players cars. And he goes, “wait, do you think I got nominated for the 21st duck?” I replied, “no you’re too old, they told me they wanted someone younger.” I am one of the worst liars so I don’t know how he believed me, I was dying with anxiety at this point. Well he is walking me around and we are watching the players warm up as they were practicing on the rink next to his where he would be teaching the kids. Long story short, he goes to start his job, and there I am with his friends and Wendy hiding at the bar upstairs. Ryan Getzlaf walks into his session with kids, Cameras and all, and completely surprises him with a jersey in hand that has Lu on the back with the number 21. At this point, I am down at the rink and smiling and trying not to cry of excitement. That day, Michael was nominated the 21st Duck and was given the platform to share his journey with Parkinson’s and spread awareness on Young Onset Parkinson’s. He looks at me with that smile of I hate you, but love you at the same time. It was one of the most unforgettable moments of my life and his too I am sure. Well, this was a journey I never really imagined. Please watch the video below to learn more about Michael, but also to see the beginning of his journey with Parkinson’s with the Anaheim Ducks by his side, as well as him being surprised by the Anaheim Ducks team and Ryan Getzlaf. Also, the photos of our dinner are above. The food was incredible and he enjoyed it even more after having the morning he had. I will begin to write about Michael’s journey with the Anaheim Ducks, and our ways to spread awareness and find a cure and treatments in between on the next posts. Thank you for your support!

It’s not about the Parkinson’s

If you are here to read about Parkinson’s and how people suffer from it, you are in the wrong place.

Last year, my boyfriend, Michael was officially diagnosed with Young Onset Parkinson’s. Long story short, it is Parkinson’s that occurs in people younger than 50. YOFP affects about two to ten percent of one million people with PD in the United States. Talk about great luck. No seriously, it has actually been an adventure. I remember when Michael first told me he was diagnosed and I was actually really sad and scared for like one second, but oddly we were both really thankful. Mostly because we were told if he was diagnosed with Huntington disease or Wilson’s disease then his insurance would be dropped. So we felt lucky he had Parkinson’s. People always ask me, before you met did you know Michael had PD?

Truth is, I knew he had something. Our first date we went to go eat All You Can Eat Korean BBQ and I noticed here and there that his hands were trembling, but I guess I just thought he was nervous, it was flattering. After a couple dates, I really started to notice, specially when we were intimate. I was never really worried until I introduced him to my family and they noticed. My mom was very transparent and even told me something was really wrong and it was up to Michael to go figure it out. After a year of dating it progressed, but I was very invested in finishing my undergrad, working forty-five hours a week, and studying abroad in London in between. In January 2018, I insisted Michael meet with a specialist at University of California, Irvine Medical offices. Dr. Morenkova diagnosed Michael with Parkinson’s the end of January 2018. I finally shared it with my family months after, but we were not very open about it, and it really wasn’t my place to share.

The summer of 2018, Michael told me about the 21st nomination with the Anaheim Ducks. The Anaheim Ducks organization nominates someone who is struggling with hardship and helps service their community. I would like to go into more details about how this happened in a more detailed blog soon. Long story short, Michael and I were forced to embrace his Parkinson’s through the excess amount of social media outreach.

So just a brief little recap of how it all started.

About us

Michael and I first met in September of 2016 and it was all thanks to Tinder. Honestly, never in a million years did I think I would go on a tinder date and nevertheless, to meet Michael. Lets be honest, we are both equally attractive, but what holds us together is our similar interests. The only reason I swiped on Michael is because he had a picture of him snowboarding and pictures of him playing Hockey. I love snowboarding, didn’t know much about Hockey, but I am very invested in professional sports. We spend most of our weekends watching college football, basketball, football, and UFC fights. Oh also, we are BOTH, I say both because he might deny it, but both enjoy watching everything BRAVO. That is where the blog name comes from, Vanderpump Rules. He is a major fan, but is probably too cool to admit. Side note: We met Stassi and Beau just recently, and I think he was just excited as I was. Michael and I both played competitive sports throughout high school and college and are overall super adventurous. I grew up riding quads and camping all throughout my childhood. Michael loves to live life on the edge, literally, he bungee jumps, sky dives, and scuba dives because he likes a good adrenaline rush. He is a little outrageous, but I mean after his diagnosis, his time is pretty limited. Michael asked me to be his girlfriend at a Drake concert in summer sixteen, super random, but another one of our interests is music. After being his girlfriend for about two months, I had made plans prior to meeting him to study abroad. I went to London for ten weeks, and surprisingly, he waited for me. Life before the diagnosis was pretty groovy and today it’s even better.

Circle back soon, as I will go over how our Journey with Parkinson’s began through the Anaheim Ducks and how we are dealing with Parkinson’s as a union. Here is a YouTube video to prepare you!

https://www.youtube.com/watch?v=hg9iIDf-ILQ

Please Follow us on Social Media to take a look @trendytease @mikeysgotparkies

XOXO