Balancing Neurotransmitters In Neurological Illness
Sara Riggare had her first symptoms of Parkinson's in 1984 when she was only 13 years old. In this video, she talks about the medications that helps her to move, think, and function. In this video, she shares how she keeps up with her progressive neurological illness by tweaking and re-tweaking her medications through tracking, so she doesn't have to take the generic prescription. The medications are essential to live her life, but she has learned that the dosing can be modified to allow her to still feel like herself.
My name is Sara Riggare, and I had my first symptoms of Parkinson’s in 1984 when I was 13 years old. It’s a very complex disease and extremely individual by nature. Some say it’s the most individual disease there is. This is a neurotransmitter in balance and neurotransmitters are chemical messages that transmit signals from one neuron to another neuron, a muscle cell or gland cell. And they have lots of different functions, both individually and combined.
Historically, Parkinson’s disease has been seen is mainly to the lack of dopamine in certain parts of the brain. But recently, the general view is much more complex than that, and there is more neurotransmitters involved.
These are my medications. I take five different kind related to my Parkinson’s, and without them I wouldn’t be here today. These pills help me move, think and they are absolutely essential for me to be able to function at all. Without them I wouldn’t be able to work, I wouldn’t be able to travel by myself, and probably not be able to take care of myself.
But here’s the thing, nobody really knows how they work. Nobody really knows what they do to my individual neurotransmitters. Nobody really knows what the effects of my doses in combination have on me. In theory, the medications I take increase the available dopamine in my brain. Either way, precursors of dopamine, levodopa, or by extending or enhancing the available dopamine.
One of my pills a dopamine agonist, mimics some of the effects that dopamine has on my brain. My least favorite symptom is freezing of gait and if you haven’t seen me before you may wonder what that is. Well this is what it looks like. At a certain sound my feet will literally freeze to the ground and I will not be able to move, and this has increased to the point that I was finding it difficult to cross the road.
So what did I do and how did I do it?
Well I thought a change in my medication would help me, and so at the end of the year I decided I was going to try and change it. This is one day’s worth of meds at that time, five different intakes and I wanted to try and reduce my dopamine agonist, the white oval one in these pictures.
The chemical structure of dopamine has a biological half-life in the body than other medications. Levodopa, has the biological half-life of about 1 ½ hours, but the agonist has more, almost six hours. When I combined them like I do in these intakes, the agonist will give me a kind of a baseline and the Levodopa will give me the effect I need if I take it often enough. But I also had to think about the best time to change them. You see, finding the right balance and the absolute right balance is very difficult. If too little dopamine reaches my brain, I won’t be able to move or think. Too much, my whole body and brain will be working double time with jerky, erratic movements. The heart rate will increase and breathing will also be racing and the longer you have Parkinson’s the more difficult this is to find the sweet spot and the more fine tuning it takes. Any changes that my body is used to, I can have a potentially very large impact in a very unpredictable way.
So I didn’t want to do this at the time when I had a lot of important and critical stuff going on, like work where I have to be at a certain place at a certain time. Because if my medications don’t work as I expect them to, I might not be able to move. So I chose to wait until I had some time off work.
On 31 December, I took my pills according to the upper-hub five times a day, and on 1 January I took I took them according to the lower-hub six times if you look very carefully you will see that there is less of these white pills in the lower half. So I went from 10 mg per day to 8mg of the agonist.
So I will add some characters from my childhood comics to illustrate my learnings, and the Swedes here will know who this is, it’s Bamse and for the rest of you you will see it’s a different culture. Bamse the bear he symbolizes the fact that I did work. My hypothesis that reducing my levodopa, my agonist would reduce my freezing of gait did work when I compensated with more levodopa.
Bamse thinks it’s “Dunderhonung” or thunder honey and he becomes the strongest bear in the world, until the effect wears off and he has to take more honey. When I take more of my thunder honey, according to my new dose my freeze on gait happens less frequently, and when it happens it’s less severe.
This is Skalman or shellback; He symbolizes one of the more unexpected effects of this. At my talk at the very first QS conference in 2011, I talked about how I used an app to get reminders to take my medication. And from using the app I recognized the way my body felt when it was time to take the next dose. This resulted in the unexpected effect that by using the app to get reminders I didn’t have to use the app. I could tell the way my body felt when it was time for the next dose.
I could almost sense what time of day it was based on the sensations in my body, and what I didn’t really expect was that when I went from five intakes per day to 6 intakes per day, my medication body clock was disrupted.
Skalman has a food and sleep clock inside his shell which tells him when to eat and when to sleep. When it rains he takes it out of his shell, and regardless of what he is doing he will do what the clock tells him to do. If it rings eating he will eat and if it rings for sleeping he will take out the pillow from his shell and lie down for a nap. So when I went from taking pills five times a day to taking six times per day, I had to recalibrate my bodies medication clock. It was much much harder than I expected.
Even still, more than five months after I changed my dose I sometimes forget to take a dose for as much as an hour or more.
This kind looking bear with an apron is Bamse’s grandmother, she makes his thunder honey for him and she lives on a high mountain with her cat and her mouse. She symbolizes my third and completely unexpected learning. After three months of having changed my dose, I suddenly realized that it felt as though I have come out of a very long haze. I felt a clear mind that I hadn’t felt in a very long time. My brain fog lifted and I started living for in the now.
This all makes me think that there is so much that we don’t know about Parkinson’s and how Parkinson’s medication affects our neurotransmitters, both individually and combined. For me personally, I think this is just the start of my exploration of continually balancing my neurotransmitters. Thank you.