After what seemed like a lifetime ago, I was back at the "scene of the crime" (so to speak). I found myself sitting in Dr. 3's office once again. She now had her own practice (FYI.. she was my original Dr. at the PI whom I really connected with). At this point, I was a blubbering mess and just wanted someone to really hear me and my concerns. I brought an extensive stack of paperwork for her to read over and a new diagnosis to talk about. To say that she was very displeased with my change in diagnosis is an understatement. She clearly knows her stuff and left no stone unturned the first time around. She put in countless hours of research to determine whether I even had PD before she delivered such life changing news. Although she felt his diagnosis was incorrect, she would not change it back to PD just yet. She first wanted to examine me that day and then reexamine me a month later (after weaning me off of most of the meds). This would give her the time she needed to study my PetScan and prior DatScan very carefully. I mentioned that I was not able to pay her fees and she told me not to worry about it and that we would figure something out.
I came back a month later (February, 2018). My body was very slowly starting to bounce back because of lower med dosages. I had even started going to the gym again (which was a huge development)! Dr. 3 told me she had good news. I did not have CBD after all. It truly was Parkinson's. She said that it is a much better condition to have, because it is easier to treat than CBD (CBD is quite rare). No wonder my body was not responding well to the meds Dr. 5 had prescribed. Dr. 3 assured me that I would slowly get better and better. My body simply needed time to rest and rejuvenate itself from all of the unnecessary medications I had taken (and of course the stress on my body from being in the ER). I made it loud and clear that at no point again, did I EVER want to feel like a medicine cabinet with a multitude of drugs entering my body on a daily basis. She agreed (or so I thought).
Moving forward, I saw her once a month. The first year was great and I felt much much better. However, in late August 2019, something changed (PD decided it was time to pay me a visit) and my body was not quite responding as well to the meds. I remember Dr. 3 telling me during our first meeting that if I ever needed her, to simply call and she would get back to me as soon as she could. At that time, I was still so new to all of this that I would panic if I felt anything out of the ordinary. I have never ever been the type to ask for help. I have always been the one to help others, but because of PD, that all changed. This was now the beginning of my second downward spiral and I was very scared. The first few times I called her for help she was extremely attentive and got back to me in a timely manor. However, that all started to change by mid October. I would not hear from her, sometimes for days. I would plead for her to return my calls or emails. When she did finally get back to me, she began to prescribe more drugs to combat the side effects of the drugs I was already on. I was so desperate for relief that I fell into the abyss of meds. The last phone conversation I had with her, she wanted me to try Amantadine to see if that would level me off. I told her that Amantadine was the culprit that landed me in the emergency hospital last time. She said that I was simply on too high of a dosage back then and that we would slowly increase the dosage this time around. Very hesitantly, I agreed. I did ok for about two and a half weeks, at which time I increased the dosage. The side effects I already had (from going back on Amantadine) just continued to get worse and worse. Keep in mind that I was also on a slew of other meds. By the beginning of February 2020, I was in bed full time, completely apathetic and severely depressed. Every time I stood up, the blood would rush out of my head and my chest would go cold. I also spent countless nights literally feeling like I was going to die. This sick feeling would come in waves and each wave was worse than the one before. When I felt one coming on, I paced around my small house hoping that by moving my body, that sick feeling would go away. Unfortunately for me, it never worked. Once the wave hit, it was always followed by light headedness and almost passing out. I had learned through trial and error how to "ride out" the dizziness. I got back into bed, curled up into a ball with the top of my head pressing into the bed. I would roll on my head back and forth (just like in Pilates) and somehow it stopped me from actually going unconscious. However, as the days went by, it only got worse. At this point, I had given up on my Dr. for help, because she was never available when I needed her. When I started to hallucinate is when I finally snapped. To be continued....
This is me..... Although I am feeling really well now, this picture represents how sick I was in February of 2020, because of med interactions and lack of care. I just wanted the world to stop spinning and leave me alone forever ☹️
