Fifteen years ago I was diagnosed with Parkinson’s Disease (PD). Within a year I was taking the standard medication associated with the disease, dopamine in its various forms (levodopa/carbadopa, aka. Sinemet). Like most sufferers of PD, my need for Sinemet, grew and grew until I was taking 200 mg every hour and fifty minutes, and should I miss even a single dose, or take it a few minutes late, I generally felt miserable (we People with Parkinson’s call this state ‘off’).
I became very addicted to and dependent upon this medication, despite the dyskinesia the medication induced in me, as well as its many other side effects, including: lots of anxiety, the exasperation of my restless leg syndrome, the weakening of my voice, my intense sleepiness and lethargy etc. etc.
But over the last 3 years or so, I have managed to reduce my dosing by about half, as well as enjoy, at least once a week, a complete medication holiday. Here’s how I did it:
It started without any intention. After taking a whole day’s worth of medication, I’d wake up the next morning and bristle at the prospect of restarting the medication cycle yet again. It just felt like it took its toll on my body and mind, and the more doses I‘d take in a day, the more of a toll it took. So I started waiting an hour before taking my pills in the morning, thereby reducing my regimen by one-half dose. Instead of a 9 am start to my cycle, I’d take my first dose at 10:00 am. I really grew to enjoy this additional hour free of medication,
One thing I learned quickly: when I’d wake up in the morning after not having taken meds all night, that initial ‘off’ state had a very different quality to the ‘off’ state I got once I started my daily dosing regimen. The latter state was much more severe than the former. This was critical to my understanding how the addiction worked in my body. It It meant that once I started taking my meds on any given day, I had to keep taking them every hour and fifty minutes or suffer when I didn’t. My body needed, demanded its dopamine! On the other hand, I could hang with my wake-up, un-medicated ‘off’ state for hours in reasonable comfort, if not with physical agility. Once I figured this out, I was on my way toward lower and later dosing.
I came to refer to my un-medicated time period as the “pre-medicated” part of my day. I wrote many poems and stories in this pre-medicated state. (Indeed, my upcoming poetry book is titled “Pre-Medicated Poems,” after the process of writing them in my pre-medicated state.) I enjoyed my state so much, that I then extended it to 11 am, thereby reducing my regimen by one whole dose. I began to really notice things that the medication was doing to me: like as soon as my meds kicked in I’d start yawning intensely, and I’d get very sleepy, this no matter how good (or not so good) of a night’s sleep I‘d had. I became a serial napper. I’d get up from one nap only to fall into another nap 10 minutes later. I found myself whiling days away in bed. Mind you, I like a good nap, but this was ridiculous.
I also noticed my voice was stronger un-medicated than medicated. This proved to be a very motivating factor in my continuing effort to be a performing poet. I took a risk one day, and remained un-medicated for an entire day and evening to see if my voice would hold up better un-medicated for a reading that night. It did. I did an entire reading un-medicated. This was an exciting discovery because it meant I could continue readings as my voice had so much more depth and breath than it did when I was medicated. The medication seemed to squeeze my voice down into a very flat and unexpressive tone. The medication also upset my diction and the cadence of my words. Huge blows to my poetry-reading life.
Once I realized that I could survive, and even thrive by missing a whole day’s cycle of medication, I began to take medication holidays regularly, sometimes to do readings, and other times just because I could and it felt good. My head was clearer, my overall demeanor and mindset were better. Meanwhile, I started taking my first dose later and later. These days, a couple (or 3) years into my experiment, I don't often begin my medication cycle until 3 or 4:00 pm, reducing my number of doses by three or even four.
For the sake of full discloser, I do have to acknowledge that 5 years ago, at least a couple of years before I began cutting back on Sinemet, I had deep brain stimulation surgery in my right brain only. This resulted in rejuvenating my left hand and arm, ending the bradykinesia and tremors that had plagued those appendages for years. I did not have the second (left) side done because, as a side-effect of the surgery, I was left with the severe restless leg syndrome I suffer from still today. Effectively, I traded an arm for a leg. I didn’t follow through on the second side surgery because of the possibility of undermining my right leg also, perhaps leaving me wheelchair-bound.
I’m lucky that I am able to carry on un-medicated better than most (and I have no doubt the DBS running in my right brain and keeping my left arm in check contributes to my ability to do this.). I do have, however, two main symptoms that are made worse by my pre-medicated state: My neck locks up and the tremor in my right hand can be a major problem. But the clarity and peace of mind I get from being un-medicated are still a bargain I’d take. Plus, relief from these symptoms is only two pills away. When my neck locks up, I’m not hesitant to begin my dosing and get relief, effectively trading some symptom relief for other symptoms’ expression. You don't ever really win at the game of Parkinson’s, but you can sometimes battle it to a draw.
I still drive un-medicated, though slowly and carefully and only within my neighborhood. I take yoga classes while un-medicated (my restless leg is far less restless during class, and thus more stable). I ride my trike un-medicated and take exercise class un-medicated. I do my grocery shopping un-medicated, and pretty much anything I do medicated, I can do un-medicated.
I recently told my neurologist about my little “experiment,” and he said as long as its not causing me to fall, or otherwise hurting myself, that he would say its okay; that if I want to take meds only when I need them, he was okay with my choice. It has not led me to any major falls or otherwise hurting myself. I consider that an endorsement of my process.
I believe, in my body, at least, that after years of usage, the medications makes many things worse. Plus the dependency on the meds compounds the problem, creating and intensifying the ‘off’ state. We become, as my friend Maré calls us, “Dopamine addicts.” I believe other folks with PD may do better with less doses in a day, as well. But everyone is different, and every case of PD is different. I just offer my experience to anyone who might find it useful or interesting, or might be experiencing problems with their meds similar to what I was experiencing. I know this: its not an option your neurologist will propose. My only caution is: if you’re interested in exploring un-medicating yourself, explore it slowly and carefully. Little baby steps are best. Wean yourself very slowly, over the course of a few years.