Good afternoon to the rain falling gently all around! I Love Love LOVE this cooler weather and the rain! Today is Sunday December 13, 2020. Three nights ago I had probably the most challenging symptoms that I have ever experienced. The day that I had my Telehealth meeting with my Dr., he told me that I no longer needed to wear the PKG watch, because he now has enough data to really understand my body and how and when it is reacting to the meds. He also told me that the data collected from my watch would help my neurosurgeon pinpoint when I am having symptoms (rarely these days), and how amazingly well the meds are working. Remember, one of the goals of the DBS will be to lower my meds by 50% (hopefully).
Once I took the watch off for good, I completely spaced on taking my 1:30 pm dose of Rytary (the PKG watch was programmed to buzz every time I needed to take my meds, so I never had to think about it). I realized right around 3:15 pm that I had forgotten my 1:30 dose, but decided to wait until 4:30 (my next dose time), rather than overloading on too much Rytary too close together. HUGE MISTAKE. Because I was one dosage short, I had insomnia and maybe slept for 10 minutes that night. The next morning I was beyond exhaustion and have no idea how I even got my dogs outside, as I was super off balance. I took my first dose of meds at 7:30 am and somehow made it back to bed. But instead of getting back up an hour later fully energized and ready to go, I just could not get out of bed and stayed there until it was time to take my second dose of Rytary at 10:30 am. The same thing happened when Rytary's side effects started at 10:45 am. I just couldn't do life so I stayed in bed for most of the day. I was afraid to go back to sleep (during the day) because if I did, I feared I wouldn't be able to sleep during the night and the whole cycle would start all over again. After my 4:30 pm dose, I started to rally and thought to myself "Great! I am on my way back to life". Boy was I ever wrong. I had dinner and then took my last dosage of Rytary right around 8 pm. I got back into bed, thinking that I would watch tv and then go to sleep. Unfortunately, my body said "I don't think so". My arms and hands began to tingle. Within 5 minutes, my arms felt like they weighed as much as a bowling ball. My arms went from feeling numb and tingly to feeling like sand was swirling around. My shoulders became extremely rigid and kind of locked up by my ears. My right arm also started to tremor. On top of this, I started to feel a major wave of anxiety come over me to the point where I was having trouble breathing because my chest felt so heavy. My anxiety snowballed until I felt like the walls were closing in on me. At this point, I knew that I was in huge trouble and needed to do something stat to help calm my nerves. So I took an Ativan (0.5 )mg. Within 30 minutes, I had completely calmed down physically and emotionally. The good news in all of this is that I woke up the next morning feeling SO much better. This episode scared the heck out of me. I think the next time I have anxiety like this because of insomnia, I will take an Ativan when I realize that I am not going to be able to sleep on my own. Ativan knocked me right out the other night. I am in no mood to go through those symptoms again. Keep in mind that this is what works for me. I am certainly not suggesting for you to start taking anti anxiety medication. I am just explaining how I am dealing with anxiety that is escalating. FYI: I had anxiety way before I had PD, but was able to deal with it. Apparently PD has made it worse. I take Ativan very sparingly, and usually only take a half of a pill, as that is all I need to take the edge off. Before the other night, I had not taken one in probably a month and a half.
I have to admit, I have a great deal of anxiety about the DBS procedure that I am getting ready to undergo. Again, I am trying not to think too deeply about it. During our Telehealth meeting, my Dr. mentioned that they are going to drill a hole in my head (I cannot remember what I had asked him to get this answer), but the thought of it set me off later in the evening. When my anxiety started, I just became more and more fearful of what is to come. That was then and this is now..... I am still going forward with the DBS. I never heard from anyone at Stanford to schedule my surgeries and MRI this last week, so I am going to take it upon myself to call them tomorrow. So far, I have been able to reach deep down to pull from my inner strength to get me through. I am about to face my biggest fears and those would be the upcoming DBS procedures. I am terrified of needles and hate the thought of being put to sleep. To be perfectly honest, I do not know if I have it in me to follow through with the upcoming events because I am so scared right now.
This is a "Wishing Flower". Some see a weed. I see a flower. When I see a wishing flower in the grass, I pull it out and make a wish and then blow all of the parachutes off, so they can replant themselves and grow again. This is something I have been doing since I was a a little girl. I call it my gateway to the Universe. Ask and you shall receive. Strength.... Please don't fail me now 🙏🏼