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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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  1. I think the blog is great, your wonderful sense of humor shines through. People do seem to gain weight after DBS, which is sometimes a good thing, but not always. OF course dopamine agonists can do this also. I think you are onto to something about it not really being about hunger per se, but rather about more of decision making effect-or low level type of compulsive behavior.

    We know that both agonists and DBS have a strong influence on “decision-making” that occurs subconsciously in the brain-because dopamine is intertwined with this process. That’s the scientific side-but the humans side that you express-I think will really reach people.

    Anyway it has my full endorsement-keep up the good work.

    Scott Sherman, MD PhD

  2. If it takes less than ten minutes to eat it does not count. lol