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💔 The Revolving Door of Ridiculousness 💔

Updated: Oct 27, 2020

This is going to be a very painful blog entry for me to write, but my story needs to be told. My goal here is to help newly diagnosed patients or even those of you who are not getting the stellar care you so deserve. Where to begin? Right here I guess. FYI.... This is going to be a long read with lots of details, as I am very detail oriented. So.... I am going to break it up into sections. I would rather not overwhelm or send you packing because it is a twenty minute or longer read. Here goes.....

I hope you read my first blog entry "Me in a Nutshell". In that blog, I wrote kind of a small autobiography about my childhood, which was filled with dance and movement. I also touched on some of the hard core fitness activities I have done as an adult. That all came to a screeching halt when I was told "You might have Parkinson's". What the actual F????? There must be some mistake! First, it was complete shock. I could literally feel the blood draining out of my head. Next, my blood started to boil (my adrenalin set in) and I lashed out at the Dr. Here is my reaction to hearing that I may have PD. “I would know if it was PD”. “It doesn’t run in my family”. “How dare you say I have this awful disease”. “You don’t know me at all” "Do you know who I am"? After having a DATSCAN, the results showed that my Dr. was in fact correct. The diagnosis.... "You have Parkinson's". Talk about gut wrenching, life altering news. After hearing those three words, my mind just shut down and most of what he said after that was not heard on my part. The one thing I do remember him saying is that PD is not a death sentence and that there are so many advancements and ways to slow the progression down. He also said that because I am "young onset" PD, and in stellar shape, that I had an edge over someone who is elderly and sedentary (and just being diagnosed). He made it very clear that I would need to be very proactive, especially physically! My Dr. knew me well, as he had been my Neurologist for 4 years. I suffer from migraines, so he was using Botox to help. Believe it or not, the Botox was a life saver. Since he knew my history, he knew that I worked out a lot. He was very pleased to hear that I was practicing Pilates and urged me to step it up! He also wanted me to continue on with cardio and to make sure I was eating right. He talked about sending me to the best Movement Specialist that Santa Clara County has to offer. He even made the call to The Parkinson's Clinic to get me an appt. as soon as possible (supposedly this clinic was one the best in the United States). But the specialist he really wanted me to see (for a fourth opinion) at the Institute was very booked out, so he suggested a clinic in the immediate area with a stellar Dr. who would help me until I could get into TPC. In the meantime, I was very symptomatic, so my Neurologist started me on the Neupro Patch. FYI..... The Neupro Patch has been a constant since day 1. Although I have tried higher mg., the 4 mg. Patch is perfect for me. Any higher and I get violently ill.

I trust my Dr. so I agreed to see the Dr. close by that he had suggested in the meantime. No matter what this new Movement Specialist had to say, I had convinced myself that it was not PD. I am very fearful of Drs and shots in general, but I have always responded well to Medical Professionals who have empathy and great bedside manner. Unfortunately for me, this particular Dr. was not "warm and fuzzy". He did the same simple tests that every other Dr. had already done. He had me walk down a hallway and back to check out my gait. Next, I had to open and close my hands one at a time and make a fist. I also had to stretch my fingers out as far as I could and then hold that hand position so he could observe the tremors. He also had me tap my fingers one at a time. So, imagine pinching your thumb to your other fingers one at a time and then stretching those two fingers as wide as possible {as fast as you can). It is almost like you are clapping with two fingers at a time. That particular test was very telling, because I could barely move my fingers on my right hand due to weakness and slowness. The last assessment he did was to check on my balance. To do this, he stood behind me and pressed down on my shoulders and then pulled me backwards by pulling my shoulders back towards him. This was always a scary one for me because my balance was so compromised at that point. I was afraid that I would fall on my head. I had done this balance test a few times already and the other Drs. had always pulled me back lightly. This particular Dr.s hands felt very invasive and way too strong, so that set the tone for me to feel extremely uncomfortable (not to mention at that time, my skin practically crawled if anyone touched me). Once he was done with the usual assessments, he sat down and looked closely at my file notes. He agreed with my Neurologist and the Movement Disorder Specialist I had seen at UCLA, on the PD diagnosis. He wanted me to start taking Carbidopa/Levodopa right away and then come back in a month to see how I was doing. During that month, I was to increase the milligram's after two weeks. I made it very clear to him that A. My body is extremely sensitive to medication and B. I did not want to become a "drug store". I have always been against taking a multitude of meds because I feel like it is a never ending cycle of adding more drugs to combat side effects from the other meds. Little did I know that I was about to embark on a very bumpy 4 year slippery slope of way too many meds. Not to mention the slew of Dr.s who came into my life, medicated me and then poof! They had left the practice before my next appointment, with no explanation or communication! Oh yeah.... Let's not forget about the Dr. who gave me a brand new diagnosis which eventually landed me in the emergency room. To be continued!

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