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  • Writer's pictureNed Neuhaus

A less visible part of living with Parkinson's

Updated: Feb 14, 2023

My insurance recently began allowing me to get 90 day supplies of my Parkinson's (PD) meds, I had only been able to get 30 day supplies for the last year or two. Picking them up the other day really hit me. I take a LOT of medicine to control my symptoms!

For those not familiar with PD medications, the most common by far is Carbidopa-Levodopa is the one the vast majority of people living with PD take (it is the small yellow tablets in the picture).

What is Carbidopa-Levodopa (C/L)?

This most common medication for those living with PD has been around for 50 years or so. It allows the brain to produce more dopamine, which is essential for more consistent movement and tremor control. The simplest way I have found to describe PD to someone who knows nothing about it is that my brain does not have enough dopamine for me to control my movements. Dopamine is a neurotransmitter that helps the brain "talk" to the muscles.

For your brain to turn Levodopa (L-Dopa) into dopamine, the drug needs to be digested into the small intestine and then make the trip to the brain, where the Carbidopa helps it pass through the blood / brain barrier. As a result, you cannot take straight L-Dopa, it won't turn into dopamine. The whole process is terribly inefficient ... something like 2% of the L-dopa I take ever makes it to the brain!

Why do I have to take so much C/L?

For all its amazing benefits (for me, I am able to move very well and have minimal tremors when C/L is working well), there are challenges as well.

When I first stared taking C/L about 8 years ago, I think I took 1 pill 3 times a day. This is very common (some even start with less). In those days, the gap between the dopamine I need to operate well and what I naturally produce was relatively small. With just a little support, my brain was able to talk to my muscles pretty efficiently and effectively.

Over time, unfortunately PD progresses. It progresses at a different rate for different people ... there is no way to predict progression. Sometimes, you develop new symptoms. Sometimes, it is just a slight increase in the symptoms you start out with. When it progresses, you need more L-dopa to bridge the gap. I now take 2 pills of C/L every 3 hours.

As you need more and more L-dopa to bridge the gap, many start to experience "off" times. This is best described as when the level of L-dopa is too low to effectively bridge the gap. Most people experience this "off" time shortly before they are scheduled for the next dose to shortly after they take a dose and are waiting for it to be digested and sent to the brain.

As if this wasn't enough, you also may be challenged by side effects (often dyskinesia) that can be caused by having too much L-dopa in your system. Managing your symptoms becomes a balance between having too little or too much in your system and making trade offs in your dosage. I often tell people managing PD over the long term is one big trial and error of figuring out with your Movement Disorder Specialist what dose and timing of medications works out best for you ... the trouble is, it won't be the same answer for long periods of time, the disease progression is constantly changing what you need.

What's the other stuff?

I consider myself lucky, I only take two types of medications for my PD symptoms. C/L and Entacapone (the larger red capsules). Entacapone can help the brain "hold onto" the L-Dopa longer, thus stretching out the time between doses of C/L.

I have only been taking Entacapone for about a year. It was one of the compromises in trying to avoid bringing my time between C/L doses to less than 3 hours. It has been working very well for me.

When I first started taking it, I was able to take it and the 2 pills of C/L as one capsule. The brand name for this cocktail is Stalevo. I don't know exactly why (I am guessing it is part of the supply chain issues around the pandemic), but I have not been able to source Stalevo for several months. So, I end up taking 3 pills every 3 hours.The packaging of Entacapone in the large capsules means that even though I take half as much of it as I take of C/L, it won't even fit in two large containers! They had to put the last bit of the 90 day supply in a small container.

A potential change

There is a surgical intervention that I can take to likely reduce the medication I need to manage my symptoms. It is called Deep Brain Stimulation (DBS), which is kind of like a pacemaker for the brain. High frequency electrical impulses are sent to the brain. People who react positively to C/L are the best candidates for this surgery.

I am currently pursuing DBS surgery and hope to have it done later this year. I will provide updates and more information in future blogs. DBS has great potential to help me manage my symptoms for a long time with less medications.

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