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Wednesday, August 25, 2021

The Hunger Games, Parkinson's Style

For most of my life, I woke up hungry. It didn't matter if I ate a large meal right before I went to sleep. I'd still wake up hungry. There was never an argument about who got to use the bathroom first; because I was going to eat before I did anything else. If I could have figured out a way to have my bowl of cereal with the cold milk in it on my nightstand, I would have gobbled it down before I even climbed out of bed. I always ate within ten minutes of getting up. Always. 

Cereal on nightstand

Then came my Parkinson's diagnosis and a carbidopa-levodopa (Sinemet) prescription that needed to be taken as soon as I woke up AND on an empty stomach. The medication made me feel a bit queasy so my cereal got delayed by an hour and I lost a few pounds.

A few years later, I started taking a dopamine agonist along with the Sinemet. Soon after, I found I was hungry for sweets and I gained a few pounds.

Then I had my DBS surgery and stopped taking the agonist and my hunger for sweets slowly disappeared. However, I kept gaining weight. How much? Almost 15 pounds!    

Prior to having the DBS surgery, I heard stories from others that weight gain afterward was common. My Parkinson's specialist confirmed this phenomena, but didn't know the exact reason.

Then I realized that I was NOT waking up hungry. In fact, I never felt hungry. I was eating because my Wonderful Hubby would say it was time to eat. If I had extra milk in my cereal bowl, I'd add more cereal, but not because I was hungry. Instead of eating a few potato chips, I would eat the whole bag but not because I was hungry. I'd just keep putting more servings on my plate until everything was gone. Not only did I not feel hungry, I wasn't ever feeling full either. No wonder I was gaining weight! The part of my brain controlling hunger and fullness wasn't working correctly. 

Was the DBS to blame? Maybe? 

I had to do something. I started to control my portions. No extra cereal for breakfast. I count out my potato chips. I allow myself one low calorie healthy evening snack, usually oatmeal or a frozen fruit bar. I am now back down to my pre-surgery weight and I'm still never hungry. 

Looks like I won the Parkinson's Hunger Game! 

PS Has anyone else with DBS experienced the same thing? 

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Friday, June 4, 2021

The WEGO Health Awards

"WEGO Health is the Network of Patient Leaders
We believe these e-patients, advocates, influencers, and collaborators, are leading the charge in health. Which is why we refer to these individuals as patient leaders." (From their website)

I have been nominated for some of their awards over the years and even became a finalist once.

From 2013

From 2014

From 2018

From 2019

From 2020

                                                                    From 2021

So, what does all this mean? I'm not exactly sure.

I think I'm supposed to brag about it. Done  

I think I'm supposed to beg for endorsements but I'm not going to do that. 

The only reason I'm even writing this post is because maybe, someday, long after I am a medical students' cadaver (a future neurologist?) someone else with a chronic illness may decide that it is OKAY to write about their own experience using humor.

And that to me, is the best reward ever.