Van Life...The Whole Story
It was about 5 years ago when my dad started to get noticeably sick. I knew from the very beginning it was Parkinson’s, but I didn’t realize the extent of it. My dad is really great at denial, I mean truly the best I have ever seen.
Trust me I am no doctor nor do I claim to know what I’m doing medically. But my grandfather had Parkinson’s so I was very aware of the signs. Classic Parkinson’s symptoms present themselves and you can often hold off the progression by starting on medication. My dad always had a bad shoulder from years of football, he held off getting anything done to help this until the pain was so terrible he could no longer bare it. At this time my father and I were living together in Phoenix. I accompanied him to the doctor to discuss shoulder surgery because I wanted to make sure the doctor saw the whole story as I knew my father wouldn’t tell the whole truth.
When the doctor starting asking about pain and such, I interjected and simply said, do you truly believe that the pain from his shoulder is causing this lean he has, the shuffle he now walks with and the back pain he constantly feels? The doctor obviously very unhappy with me possibly deterring my father form surgery said “well if you’re in pain it could cause other issues”. I believed in the system and hoped they would do a full work up panel, after being informed that Parkinson’s runs in the family.
My belief in the medical system was quickly ruined, as the doctor who was cut happy neglected this huge detail and just wanted to cut.
After my father came out of surgery his Parkinson’s symptoms had doubled in severity, with a little google research it was easily known that anesthesia for someone with Parkinson’s is very difficult and they should undergo a particular type. I tried not to be upset but I was furious, not just at the medical system but also at my dad. Did he not care enough to find out if he had Parkinson’s? What was the reason in not finding out, Parkinson’s is not a death sentence, sure there is no cure, but there are so many ways to prevent the symptoms from furthering with medications, diet and exercise.
To say I was furious but mostly hurt was an understatement
While my father and I lived together in Phoenix it was easily one of the best times of my life, it was the beginning of REPAIRING our relationship which had been challenged while I was in high school. I’ve always been a daddy’s girl, and all the way until my junior year in high school my dad and I were extremely close, things changed very abruptly, but that is a whole different story.
As we lived in Phoenix together I started to realize I had my dad back that I knew and LOVED so deeply.
The man I looked up to more than anything in the world, the only man I ever loved. Living together and coming home to share about my day with him just felt right. We would go to dinner together every few nights, talking about my CrossFit training and plans. The athletes in both of us dwelled on the torture involved in my training. We both understood what it meant to push yourself, and to be completely committed. Every night we would go to dinner I relished in that moment, my dad was back, the man I had begged to come back. He was here, just to be taken from me as quickly as he had come back.
His symptoms continued to get progressively worse, and I was beginning to help in his everyday tasks.
I was so mad at him, not because I had to help, but because he was letting the man I loved slip away, without a care in the world.
The selfish denial driven man he was took over and we never talked about his sickness. As I stayed living in Phoenix with him watching my dad slip away I knew he had Parkinson’s, and I wanted so badly for him to get help. I WANTED HIM TO STAY FOR ME. But time and time again he didn’t. There came a point where I realized just like an alcoholic I was enabling him, by living there and doing the things for him he no longer could I was letting him continue to deny. So I had to make the hardest decision I have ever made. I moved, and I left him alone in that house to fend for himself.
The day I packed up and left I backed out of the driveway with tears running down my face.
It was as though I knew what my future held in store. But little did I know just how horrible my future would look. Of my 8 hour drive back to California I likely cried for 6 hours, not just for my dad, but for my whole life, my future everything. If there was one thing I knew for sure it was that my life as I knew it from that moment forward would NEVER be the same. That good bye was the hardest of my entire life, I knew it was the good bye to my dad, I knew it was the final good bye, good bye to the man I loved as my father, the man I idolized and thought the world of. From this moment forward he would only become progressively more a shadow of the person he once was.
The days continued to pass with him living in denial, he found people in Phoenix which took pity on him and would help him in the daily chores I once helped with. As the issues continued to progress, he started to fall, and once he fell he wouldn’t be able to get up, he would have to call someone to pick him up. He began falling more and more and one of the so kind individuals who would pick him up let us know that it had progressed quicker than it should.
After much convincing and research on drugs that have been used previously and are now currently in use my mom got my father to agree to see a doctor and address the parkinsons. As my mom was living in California and my father in Phoenix alone, my mom agreed to find a doctor in phoenix, which we had hoped for the Mayo Clinic, but with the need to start medications ASAP we didn’t have the time to wait for an opening at the Mayo Clinic. As they entered into those doors at the other highly respected neurologist the rest of us anxiously waited to hear if this doctor would diagnose my father with regular run of the mill Parkinson’s or if he would be given the A-typical diagnosis.
Both my mom and I just knew in our gut that this wasn’t normal. We held out hope because receiving that A-typical diagnosis essentially meant we were in for something completely out of our control
Sitting anxiously by the phone I waited and texted frantically, when I finally got that text that it was normal Parkinson’s. To this day I remember that exact moment, but that moment was quickly fleeting.
With time continuing to pass and the symptoms rapidly progressing, we were seeing little to no help from the medications. With my father still living in Phoenix we convinced him to come spend the summer at the beach, as he arrived we all quickly realized something wasn’t right. Our worlds were shattered, the reality hit us like a freight train.
My mom and I both knew it was a-typical Parkinson’s, it was nice to live in denial as long as we could but the writing was on the wall. It was time to see a new doctor and get clarity for the future that laid ahead. Fortunately we were able to get into USC and begin working with a specialist there. But the diagnosis that was ahead of us was one you read about and never believe to be true. You think this is to horrific to be brought upon a person. Well that quickly became my reality.
The doctor gave the official diagnosis MSA (multiple systems atrophy), likely caused from CTE brought on by multiple concussions from Football.
The doctor does believe it would have stayed as normal Parkinson’s without the multiple head traumas. Once you google MSA you think this can’t be real, and once you realize this is your life you laugh. Because it’s so horrible you don’t know how to respond. All you can do is laugh that this is your life and what you’ve been dealt.
There will be so many more posts to share about the progression of this disease as I seek to bring awareness to it and the issues we have faced being one of the few to go through this disease.
As we received the diagnosis we had been waiting for our hearts sunk and we already wanted the nightmare to end. While all of this began taking place in our lives I looked at my dad, as his body quickly began to give way, he was no longer able to do simple things. The thought of taking a trip or checking anything off a bucket list quickly became just an idea.
While watching my father rapidly deteriorate, I realized I NEVER want to let my life slip away. I looked at him realizing he waited his whole life to do things and now he would never have the chance to. Our family would no longer be whole, the next few years would be focused on him and this disease. It would take everything we have to keep our heads above water.
How do you prepare for someone to die while becoming their care taker? Can you ever truly prepare for someone to die.
So as my father got closer to the end my dream to live on the road became no longer just a dream. I knew in my heart that he wants more than anything for me to follow my passion, so I did everything in my power to be there for him and my family as this nightmare played out. I made sure when the day came I could show him that I’m living my life. That his disease will not go to waste, that his life has inspired me to make more of mine. To no longer live a great life on paper, but to live a great life of memories. Of moments that I will never forget.
I wanted to have my van built before he passed, so he could see that once he’s gone I’ll be okay. That I will hurt, that there will be days I can hardly move, but I will have him there with me and I will live my life because of him.
My dad never got to see my van finished.
I know that if he were here there would be a smile on his face.
I can see his smile, as I’m showing him photos of places I’ve been. I can hear his voice as I’m telling him about my life, and how happy I am.
I can feel him telling me he is proud.
But I wish he was here, I wish for more moments. I will forever be grateful for the moments that we had. I will forever thank him for what he taught me, for the life he provided me. The lessons that our story has given me are ones that will be carried with me forever.
I love you dad, for showing me to LIVE.
1 + 1 = 11 💛💚
