The Fifteen Year Anniversary of My Parkinson's Diagnosis

The 15th anniversary of me finally being diagnosed with Parkinson's disease (August 2007) came and went without any fanfare. I was too busy to even think about it. I was 2300 miles away from home and my normal daily routine was completely screwed up. In fact, the only thing that kept me sane, was my sense of humor. I laughed a lot during those five hectic weeks.

We had flown into Orlando, Florida very late on August 3rd. My stepdaughter was having major surgery and would need MY help afterwards. Her home isn't large enough for four adults (Her, her son, her dad & me) so we stayed at a nearby Airbnb. We only had a few days before her surgery but we were able to get over to the beach, once.  

First I had to learn the idiosyncrasies of her car. Then I had to get used to the Orlando traffic and be able to get to the hospital and back in the dark while driving in the daily thunderstorms. I hadn't been in Orlando in over a decade and back home in Yuma, it rains so little, I don't even know how to turn my wipers on!   

Most days we left the Airbnb before 8 am and got back after 11 pm. For five weeks, I was her nurse and pharmacist. I helped her get into and out of bed, bathe, braid her hair and get dressed. It wasn't easy but I just did what had to be done. By the way, the surgery was a success and she is doing great.

So, other than that, how am I doing 15-years after diagnosis? Well, according to the experts back in 2007, I should be in a wheelchair or using at least a walker. I should be showing signs of cognitive impairment. I should be taking tons of Parky medications around the clock. 

But I am none of those!

I still walk unaided. I still drive. 

I can still do the daily Wordle in less than 6 tries. 

I take care of all the family finances. I do our income tax returns myself. 

And I haven't taken any Parky medications since shortly after I had my DBS battery replaced in June of 2019. 

I'm not perfect though. 

I drool a lot because my mouth is always open. Wearing a mask in public solves that embarrassing situation. At home, I'm kind of like a slobbering dog. Woof! 

And my speech is getting much worse. I know exactly WHAT I want to say, but it's a struggle to get the words out clearly and in complete sentences. Even Wonderful Husband has difficulty understanding me. The louder I try to speak, the worse both the stuttering and slurring get. The funny thing is, I can whisper into my Google speech keyboard and it will generally type exactly what I say. 

My right foot tends to freeze (feels like it's stuck in glue) especially in areas where the flooring changes or if there's clutter or tight spaces. This was a huge problem in Orlando and almost caused me to fall many times. The Airbnb had 5 different types of flooring and not much room to maneuver. Put me out in the open, and my foot never freezes. 

I have been working with my DBS programmer to try to fix these freezing episodes. I only see him every few months and unfortunately for me, changes don't take effect right away. So he's long gone before I know whether it's an improvement or not. 

All in all, I'm doing pretty darn good. I wonder what to expect in the next 15 years? One thing for sure, I'm going to keep on laughing. You should too!.