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Our Disney HalfMarathon Story (part one)


My dad, who was diagnosed with Parkinson’s disease (PD), and I completed our second Run Disney event on Jan. 14th - the half marathon at Disneyland. We did the full last year in DisneyWorld and the takeaways, as you see in the pictures or can read about in this blog, broken into a day by day account, were phenomenal. Even though you’ll see a lot of smiles in the pictures from race day, getting there is not all big leg kicks and fist pumps. There are a lot of difficulties - things that happen behind the scenes, beyond the glance of a camera - to get to this stage. We were constantly challenged by the unknown, forcing us to improvise and confront difficult conversations. There was very little “smooth sailing” outside of the run itself over the course of the weekend. All of this is vitally important to include when we tell the whole story of Parkinson’s disease. 

DAY ONE - Friday, Jan. 12

I’ve joked that getting out the door should be considered an Olympic support. When we hit the road from my mom and dad’s assisted living facility, I wasn’t laughing. Clothing, food, beverages, bathroom supplies, electronics and their tethers, mobility devices, and medication, oh, precious medication, all need to be carefully considered. It is important to ask for help. And professional help whenever possible. For instance, the med techs at my parents assisted living facility. When they took over the daily medication distribution that was a huge win for me as a care partner, and ultimately, my dad, too. He wanted to continue handling it on his own, but he wasn’t doing it correctly. It took time to get him to hand this over, accepting the help and charge that came with the professionals managing this. 

We also had help from my parents' nurse, Wintana. We are fortunate to have gotten her through the V.A., as my dad is an Army veteran. She is with my parents typically four days a week for a few hours per stretch helping with everything from activities of daily living (bathing, grooming, eating) to preparing for a local trip to the doctors or a long distance one like this. The fact that my mom came at all was a huge win. She suffers from bipolar depression and some day it just feels like any way the wind blows. Seemingly simple tasks, like walking out the door, can, in fact, feel Herculean. 

Once we were in the car, things were pretty good. There’s a feeling of peace with everyone buckled in, food and drinks available, the car in good shape and road music on the radio that my dad can clap along to. We’re all moving in the same direction. The road conditions were mostly good. There was some traffic in L.A., but when isn’t there? I asked my dad about his memories of Disneyland and he told a story of when I was a baby and pooped all over the back seat just before they reached his brother’s house in Anaheim. Apparently my sister and I were rolling around in it having a great time. My mom and dad - not so much. Somewhere in the story I think my dad was saying that if someday I had to wipe his butt, he’d already taken his turn at wiping mine. Fair enough.

We arrived in Anaheim (no poop in the car this time) and were able to pick up our race bibs and t-shirts at the expo with only a few bumps - mostly from a few Disney employees not really knowing which direction to point us. Unfortunately, mom’s bipolar decided to start driving her body again. She chose not to join dad and me as we went into the fitness expo. 

We grabbed some quick food at Chipotle then found our VRBO without much difficulty, just a few miles down the road. It was nice - but unlike a hotel where you have a front desk to call, there were some unknowns to deal with. How to turn on the space heaters? How to turn on the televisions that were oddly mounted and had some sort of internet service that wasn’t giving mom and dad their typical channels? Dad said the channels were all worthless. Mom had joked about me dealing with two toddlers in taking care of them, and the terror of the TV not working the way I expected really drove this home. I’m not advocating this as great parenting - I’m saying if you can park your child or parent-child in front of their favorite show, you can earn some much-needed respite, breathe and take care of the other stuff. And there would be other stuff to take care of. 

The first popped up with mom saying one of dad’s meds was missing. He takes pills four times a day to manage his PD. The med techs at their assisted living facility had packed them all into envelopes with the appropriate times. They included morning, noon and bedtime - missing the afternoon meds. PD meds are cumulative and the goal is to take the carbidopa on a regular schedule so as to keep the dopamine flowing and allow for as close to “regular” functioning as possible. It’s far from perfect, but life without the meds is not pretty. So missing this dose was a very bad thing. I immediately called the assisted living facility and got a hold of one of the techs. He sent me down a rabbit hole that didn’t bear results. I called multiple Kaiser (our insurance) pharmacies, and got routed through numerous people in both northern and southern California to assure they could actually talk to one another. They assured me they could. After several hours of wrangling, I found a Kaiser pharmacy a few miles away that had the pills. Unfortunately, while they had my dad in the system, they didn’t have his medication in the system because it was being supplied through the V.A., even though the pills were assigned by his Kaiser-based doctor. We needed a total of six carbidopa-levodopa pills. I had the Kaiser doctor’s prescription from the assisted living facility stating exactly what we needed but this pharmacy refused, saying if he wasn’t in the system there was nothing they could do. I was exhausted. I headed back to the VRBO, hoping my parents were okay with the worthless TV.

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Cliffhanger here. What an ordeal I can truly relate to. As recently I found myself in one of our tallest snow covered mountain towns without my meds. For the first time in all the years I’ve been taking it.

This right round with insurance when it is such an essential part of so many people’s lives.

A problem we face in this area often is supply versus demand makes things a challenge. I’ve made the mistake of running myself low a time or two. Resulting in a mad dash between pharmacies. Never knowing what generic I might have to adjust to. Or how much I might have to pay for it as prices fluctuate between stores.

The music always makes…

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