I’ve now entered a new stage in my Parkinson’s journey. Psychosis. Yes. I see things that aren’t there like mice, big critters, and bugs, but mostly bugs. From what I’ve read and was told too, that about 40% of the patients end up with this at some point in their journey, however this can also mean other things which aren’t so good.
The psychosis, is scary and is something that can mean possible other underlying diseases such as Loewy Body Disease with Dementia, or perhaps one of the Parkinson-Plus syndromes such as Multiple-System Atrophy, which has much of the same components as Parkinson Disease, but worse with a host of other scary things.
I’ve been living with Parkinson Disease since about 2004 if not before that, and initially diagnosed as possible Parkinson’s in November 2006, and the diagnosis affirmed in 2012 as Early Onset Parkinson Disease with dystonia. My daily doses of Carbodopa/Levodopa, aka Sinemet, remained pretty much the same until 2012 when things started happening.
From November 2006 until sometime in 2012, I took the 2-25/100 Sinemet pills 3 times per day happily. The dose increased a bit with the controlled-release coming into the scene for nighttime use to help with the dystonia. Amantadine was added, and so was Azilect and Selegiline to help smooth things out and keep the dopamine levels up in my system. This all worked, and my daily dosages, taken regularly made me feel “normal” and pretty much happy as a clam since I could still work and do other things like I always did.
Unlike most people, I never had the major side-effects, such as those writhing movements known as dyskinesia. Outwardly, I showed no tremor, though I suffered from the other signs more often than not of stiffness and rigidity, and slowness. Staying active both mentally and physically helped with this, but eventually failing organizational skills and falling caused me to no longer work.
My doctor recently commented on the fact that I am so involved in music that I am able to stave off many of the symptoms which affect people as time goes on. There’s that magic link between music and Parkinson Disease, which is being studied more and more.
As I said everything was great until 2012. It was then that I started with bouts of nausea and vomiting, which is a common side-effect of these medications. The feeling is flu-like, however, you don’t get over this quickly, and you don’t have the flu bug. Between the stiffness and soreness until the meds kick in, then the nausea and vomiting when you take the next dose, you want to die. There’s no other way to describe it. You can’t keep food down, though taking the medication with food is recommended in this case. The meds make your brains foggy so you can’t think, and you feel like death, except it doesn’t come as easy as you’d like.
Crackers would come up undigested within 20 minutes of the medication kicking in. Once the meds kicked in, and the nausea subsided, I was good to go until the next dose when I was heading to the off state, becoming stiff again, and ready for the next round.
My neurologist and I had a rather serious conversation about this. Since I was actually losing weight from being unable to keep food down. I went from 156 lbs. to about 138 lbs. The answer was to cut the meds down. We cut back from about 18 pills a day to nine. This worked okay, and I was happy as a clam again.
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With the meds, I had the usual vivid dreams, which I don’t mind usually. Heck it’s cool feeling the heat on your face from sunlight, or smelling pizza and sub sandwiches at a restaurant. But... I had bug dreams too. Lots and lots of bugs, which would sometimes wake me up. I’ve had some acting out too and landed on my head one night, and another time punched myself in the face. REM sleep disorders and Periodic Limb Movement Disorder (PLMD) is common with PD patients, however, the vivid dreams and the PLMD should have clued us in because people that have these things tend to have the psychosis earlier in their journey. Keep in mind here just because something is common among a bunch of PD patients, it doesn’t mean that all get it; it’s one of those crazy aspects of PD.
This was good for about 6-months then I found I could take the medication for a few days before the nausea would kick in. The same deal all over again, and additional neurologist visits and some phone conversations with the doctor. We cut back again, really cut back to 1-½ pills per day, or ½ -3 times per day. It worked! Yes it worked and I was happy again — for 9 months.
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During this time I’d see an occasional flicker in the corner of my eye. A black shadow, a movement, a presence, but a turn of the head and whatever was their was gone. This was off and on during the evening, and mostly in the wee hours of the morning. I also had some other nighttime things happening.
On more than one occasion I had visitors in my bedroom, and it wasn’t my cats, Lulu or Lilly, seeking out a place to sleep. I could see things move in the shadows, and sometimes feel things walk on my bed! I’d wake up and nothing was there. Another time I was fully awake. I know because my blanket had fallen on the floor and I had to reach over and pick it up. It was then I was visited by aliens. Yup I had bright lights in my room, and space creatures, like you see in the movies with the big eyes, all staring at me.
Another time it was aliens again, and this time it was serious. I had some very bad dystonia in my neck and back. (I’ll explain what dystonia is in another diary someday). When these spasms kick in, the trick is to take an extra Sinemet to reduce or stop them. It works and then everything goes back to normal. Well this time I had some dystonia which would not go away. I called into my doctor, and she recommended I take a bit more than normal, which I did and I was finally able to eliminate that pain.
I went to sleep… I saw yellow-orange lights in my room through my eyelids. I first though my neighbor across the street was having car trouble and it was a tow truck. This wasn’t uncommon with his car. I looked outside and nothing was there! I then laid back in bed, and there they were. These big green-silver alien-critters were standing over my bed. I couldn’t move; frozen in place by fear, or maybe sleep paralysis. I’m not sure. I then felt something stab me in my stomach and that awful dystonia pain I had left me completely. The rest of my dreams were quite interesting, but this really hit me!
The aliens, bugs, and critters appeared more and more, but mostly at night. Then one evening, late in January this year, with about 2-feet of snow on the ground during a blizzard, I saw bugs walking up the walls in my room! Eyes wide-open, I sat their frozen and scared to death as I watched a swarm of very large ants and cockroaches walk up the walls. As quickly as they appeared, they disappeared and everything was back to normal, except I couldn’t sleep because I was creeped out.
Other times I heard my dad call out to me. My parents live in the same house with their bedroom on the first floor. With both being elderly, my brother and I keep our ears and eyes open. At this point, I even got out of bed and half way down the stairs to only to hear snoring. Yup! Nothing going on and sleepy-eyed Lilly came over to me to see why I had gotten up at that gawd awful hour.
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These incidents happened more and more frequently, and with this minimal dose I’m taking we can’t go any lower other than none at all, which I can’t due. I have and it’s nasty because you don’t realize how much the meds help. Even with this small dose, I see things. This time they’re bigger and are appearing during the day. Yes big grey rats this time. I was at my computer, reading Kos actually when I saw something move in my room. I turned around and saw two grey rat-like shapes move towards the bathroom across the hall. I got up from my chair and followed them into the bathroom where they disappeared never to be seen again!
So where am I now, besides heading to the funny farm? I really don’t know. We have a new medication, which I can’t even remember the name of, coming in to Walgreens. Being a new medication, it’ll undoubtedly be extra expensive to boot.
I’m scared, folks. There’s no other way to say it. This new road is not fun. The vivid dreams are cool, but they can leave the other baggage home!