It was suggested that I should be permitted to administer my own Parkinson’s medication. That way I would not have to worry that meds would be late, or not turn up at all. It is tempting…but a bad idea.
The Morning Meds
I currently take 2 levodopa and 1 entacapone every 3.5 hours i.e. 4x per day. I’d say the 6 am one is the most critical one. After the long night the level of dopamine is low. It is when I get the most problems with dystonia (cramps).
Usually there is a very friendly nurse that brings me the first meds. She always greets me with a huge smile. Then I know my day is going to go well. She understands my stiffness and waits patiently until she passes me the water and the medication once I’m in a stable upright position. That is very important because swallowing is difficult and you don’t want the meds go the wrong way.
A few times the director of care brought me the first meds, I guess the boss has to step in when he has no nurses available, but he certainly does not have the same smile as the friendly nurse.
Timeliness of medications
The timing of the medications is very important. We had an understanding that if the nurse was late or could not come at all, I would take a dose from my emergency supply (I had a few tablets left over from when I moved to Kiwanis). Then when the nurse would bring me the meds later I would replace them in my emergency supply. This led to an unfortunate incident when a nurse insisted that she could give and make sure I take the meds within a 30 minute window either way.
This in turn is why they want me to manage my own medication. The real solution is training.
Why Is Timing So important?
We try and get a stable concentration of dopamine in the brain area, that is inside the blood-brain barrier. The dopamine can replace the functionality lost because the natural dopamine is no longer produced. This replacement method, even though it is referred to as the gold standard treatment for Parkinson’s, it only helps to relieve 20% of your symptoms, it is not very good at that either.
The dopamine concentration in the blood in the brain drops off fairly rapidly, it has a half-life of about 90 minutes.
So from the 6 am dose, it takes about 40 – 60 minutes for enough dopamine to be built up in the blood in the brain to start having an effect. It is only after the next dose at 9:30 that a reasonable level of dopamine is reached. So my best time is after 10.
It is very much like pushing a child on a swing, if you give the swing a slight shove at the right moment, it will maintain a steady rhythm. Push it at the wrong time your child will soon tell you that you are doing it wrong!
The nurses know their schedules, so they often bring me my meds early, then it is up to me to take them on schedule at the right time. Normally that works fine. But in the early morning it is a potential problem. A few times now there has been a different nurse in the morning. It is dark, so I have no idea what the time is. She has brought me my meds at 5. Then I have to stay awake to make sure I don’t sleep past 6 am. I have taken my meds early like 30 minutes or more on a few occasions. It really ruins the day, as you never really get that steady rhythm of the dopamine again that day.
What’s going on in there?
A day in the life of a dopamine molecule…
The substantia nigra are clusters of the cell bodies of neurons, they are subcortical i.e. they are located below the cortex or as Poirot would say “little grey cells. So the neurons involved in thinking, memory etc. sit in a slab at the top of the skull. Nerve impulses move up and down the nerved in the spinal chord to the various organs that they are connected to. The largest organ that they are controlling is the skin! I have been studying the nociceptors in the skin as they seem to play a role in neuropathy, the bane of my life.
One should use the terms more accurately but then I sound like I belong in Gray’s Anatomy! Neurons, or nerve cells. have a cell body where the nucleus, with DNA. Then extending out from there is a long tube-like extension called the axon. Nerve signals travel along these tubes or axons.
The axons in some parts of the body are quite long, several inches in fact. But most are really short, just millimeters.
The cortex containing “zee leetle grey cells” is where your thoughts are made, like play middle C on the keyboard for example. That thought has to generate a special sequence of nerve signals that somehow must get to spinal chord to travel down the axons to instruct the muscles in the finger to press the middle C note.
The midbrain is where neurons in the cortex, generating the thought, pass through. The midbrain is the name for the area where the basal ganglia are located.
If you put your finger at the back of your head where the skull meets your neck, that’s pretty much where the Substantia Nigra are located. They are actually quite small, not much larger than a pea. There are two, but they are encased in a single cover.
These small blighters are what has caused me all this grief, taken me years to understand, and made me want to argue with a nurse in the early hours of the morning why the information about the importance of meds timing as stated in the Parkinson’s Canada that I wanted her to read, was scientifically correct and that Parkinson’s Canada was a reputable organization and that it trumped her training that a window of plus/minus 30 minutes! In her situation I would have reacted the same way. But training could certainly have prevented the situation arising in the first place…
It is a little freaky at first but having a good plastic model, helps one to get the location of the various components clear in your mind.
In this post we have looked at some of the practical aspects of Parkinson’s medication. In the next post we will look at the substantia nigra, whose job we now want to replace using levodopa, in more detail.