Greetings! Today is Saturday October 10, 2020. If you read my last two blog entries, then you know the past few weeks have been challenging for me, because of med changes a few times to try and get it right. Normally, no matter how sick I feel due to side effects from the meds, I have been able to bounce back fairly quickly once the dosage is dialed in correctly. PD is very tricky in that it can strike at any moment for no rhyme or reason. Once I think the dosage is perfect, it seems like something always happens to trigger my own insecurities.
Now that I am back down to my original Rytary dose and am using a 4 mg patch (instead of a 2 mg patch), I am definitely feeling more like myself. However, I am still very fatigued and rigid. So much so, that I am not practicing Pilates at the moment, because I am afraid that I am going to hurt myself. When I look into my hearts of hearts, I realize that my body has just been brutalized with too much medicine and terrible side effects in a short span of time. Of course, I want to feel perfect stat!
The good news in all of this is that my body reacts relatively quickly to any change that doesn't agree with it. This is helpful information for my Dr. Once I report back to him (I keep a journal of symptoms), he can tweak my meds, as needed. Yet again during the last week and a half, my body reacted very strongly to a dosage change. It just got worse and worse until I stopped taking the extra 95 mg of Rytary and went back to the original dosage. Within this time frame, I had terrible Dyskinesia, with rigidity that literally took my breath away. I also experienced very severe anxiety that almost put me over the edge. Once my anxiety started, it was only a matter of hours until a panic attack set in. I have anti anxiety pills, just in case, but I try to only take a half of a pill, if I can't take the anxiety anymore. I think the Dyskinesia has truly caused a lot of the exhaustion I presently am feeling. The Dyskinesia is gone, but the fatigue and rigidity remain.
On a happier note (I feel like my entries are getting sadder and sadder because I am feeling sad at the moment). Just trying to be real here folks! I am the proud owner of a spiffy looking PKG watch for the next 30 days. This state of the art watch actually looks like a sports watch and several people have asked me where I got it! I am to wear it 24/7, unless I am taking a shower. This watch is measuring my brain waves, tremors, rigidity etc..... at all times, even when I am sleeping. Every 7 days, I will see an envelope icon on the face. When I see the icon, I simply take it off and place it on the docking station. The results of the last 6 days will be sent directly to the Dr. so he will be crystal clear on how well the meds are working. This data will help guide his next move re my meds. I am happy to be wearing the PKG, because it is only going to put into focus, what I have been journaling to talk to my Dr. about when we have our Telehealth meetings. To be honest, when I feel bad, it is almost impossible to start journaling about symptoms, because I just want to rest. The other handy dandy feature that the PKG has is an alarm that vibrates when it is time to take my next dosage of meds. How cool is that? I don't even have to think about it for the next 30 days! I will keep you all posted when I get my results! On that note, sweet dreams to you and yours.
Here we have exhibit A.... The PKG watch
It is so light, I forget I have it on until it vibes 🤸🏼♀️
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