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The Last Straw

So.... To catch you up to speed.... My original diagnosis of YOPD was changed, courtesy of Dr. 5. After ordering a PetScan, he concluded that I did not in fact have PD, but instead I have Corticobasal Degeneration (CBD). Six months after my new diagnosis, Dr. 5 left the practice for greener pastures. However, before leaving, he assured me that my new Dr. (Dr. 6) was up to speed on my case and would work miracles with me. I only met with Dr. 6 twice. The first meeting left her puzzled, as the medication that landed me in the ER usually works well for her CBD patients (to refresh your memory, the medication that made me so sick was Amantadine). She did not seem to know what to do next to help me. I do not remember what she did to tweak any of my meds during our first appointment, but I do recall she made some changes. When I met with her for the second time (a month later) in mid September 2018, I told her that I had not felt any improvement in my symptoms since our first meeting. At this point, she pretty much threw her hands up in the air like she had resigned herself from my case. It was clear to me that she did not really know what to do, because pretty much every medication that she suggested I try, had affected me in a horrible way. I left there that day vowing never to go back to the PI again. Sadly, after 39 years of service and care to the PD community, the Parkinson's Institute closed their doors forever in December 2018.

At this point, I had been thinking so much about Dr. 3, who had originally given me the PD diagnosis and had cared for me until she left the PI to open her own Concierge practice. I decided to email her to ask if she knew of any great Movement Disorder Specialists, who could truly help me to get better. She responded by inviting me to come in and meet with her. I was so excited that I would be able to reconnect with her again after all this time. The moment she came out of her office to greet me, I just started to cry. She was so happy to see me, but at the same time shocked by what she saw. I could barely walk and was extremely fatigued. My long hair was in total disarray,.as it was almost impossible for me to take a shower because of dizziness (not to mention I never wanted to get out of bed again). My right hand was stuck in a fist position and I could not straighten my right arm. On top of everything else, my depth perception was off. I actually held on to the wall as I stepped down into her office so that I would not tip over by accident. I also had that masked look on my face again. The person she saw in her office that day was unrecognizable to her. When she left the PI, I was very slowly beginning to respond to the medicines she had originally prescribed. I was also smiling and laughing and just all around starting to feel better. Now, I was reduced to an apathetic, depressed glob.


I told her about the merry go round of Dr's. that I had seen since she left. I also mentioned that I have a new diagnosis..... CBD. That comment did not sit well with her at all. Basically, Dr. 5 had questioned her expertise and disagreed with her findings. She was not having it. To be continued.....

This pretty much sums up how I felt that day when I went to see Dr. 3 at her new practice. "Don't look at me. Don't talk at me. Just leave me be" ☹️

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