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๐ŸŒ€ To DBS or not to DBS ๐ŸŒ€

Today is Friday November 13, 2020. Happy World Kindness Day. Kindness is Always the way to go. This morning, I took two stretch videos on Zoom. You have probably gathered by now that the classes I prefer to take online are taught by Professional Ballerinas. They are very intuned with injury prevention and the body in general. Their directions and explanations of each exercise are flawless. As a former ballerina, I greatly appreciate being able to take these classes for free. As I have mentioned before, PD would like nothing better than to tighten up every square inch of my body permanently.. I will NOT allow that to happen. I stretch on a daily basis and that will never change. As I am becoming stronger, I am able to stretch farther and for longer periods of time. As a side note, I am still working diligently everyday on sitting in a straddle stretch position, and then placing my upper body flat on the floor in front of me. I am sooooooo close, but it feels like there is an invisible force field that continues to hold me right above the floor. There is absolutely no way I am going to force it to happen. That is where injury begins. Believe me, as soon as I am able to do it, you all will be the first ones to know!


In the meantime, I had a very interesting Telehealth meeting with my Dr. this past Tuesday. He received my first set of PKG data results (from the watch I have been wearing). He sent me the results early Tuesday morning, so that I could look at them before our meeting. There were a bunch of scribbles and tick marks on each page (there were three different reports). Each page also had writing next to the scribbles. He explained them to me in a way that was user friendly! As I mentioned in my last post, he did in fact see the evidence to substantiate what I have been trying to explain to him for months (the side effects soon after my first dose of meds everyday). He said that there are a few things I should consider in helping to relieve the early morning side effects. Because of the fact that Rytary is short acting, my brain craves more Levodopa than it is getting first thing in the morning. My body and brain are used to Rytary entering my system every three hours during the day, so other than the first dose, I stay symptom free. But then I go about 8 hours without Rytary, because I sleeping. So the first choice would be to increase (in mg) that first Rytary dose of the day. The second choice would be to not do anything because any increase we do usually results in my body rejecting it. I am not keen on increasing the Rytary because other than the first dose of the day, I am doing great!


The one thing that I have not mentioned here yet is the fact that Rytary is causing me to have Dyskinesia. In case you do not know what Dyskinesia is, your body has involuntary muscle movements and they do not stop. It is rather bothersome for me, but I am dealing with it the best way I know how.... Through stretching and moving. I was telling my Dr. about how my body starts "dancing" around 10:30 am every day and then continues on for the rest of the day. At this point he brought up the DBS procedure. What is DBS you may be wondering? It stands for Deep Brain Stimulation. From my understanding, it is a procedure where a device (much like a heart pace maker), is implanted in your chest. Electrodes are positioned deep within the brain and like a pace maker, electric pulses are transmitted to the brain to regulate your brain activity. So, DBS would help to substantially reduce any tremors, stiffness, slowness and dyskinesia I might have. Potentially, if all goes well with the DBS surgery, my meds may be lowered. There would even be the possibility for me to go off of all meds. I do not know much about the DBS, but what I have heard has been all positive! I was under the impression that you have to be in bad shape to be considered for this procedure. My Dr. explained that because I am so healthy and Young Onset, it is better to have the procedure when you are doing so well. Given that almost every single medicine I have tried has made me so sick, I am a great candidate for this procedure. To be continued....

๐Ÿ’• I am so happy that I have gone back to my roots. I am getting stronger each day. Please feel free to contact me and I will share the videos that I do, as well as some guidance if you are just getting yourself back into fighting shape ๐Ÿ’•



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