Updated: Jan 23, 2021
So.... In my last entry, I wrote about the actual diagnosis day and the first of many Drs. that I would see for help (not by choice). The first Dr. I went to see was an interim Dr. until I could get in to see someone at the Parkinson's Institute. I met with Dr. "2" twice. During our second meeting, I told him that the medication he prescribed was way too strong for me (I was on the lowest dosage so there was no way he could tweak it). I felt like a zombie. His answer was to add another medication to combat the spaciness and apathy I felt. I voiced my concern about taking too many different pills on a daily basis to which he simply replied that this was nothing compared to his other patients who were taking 30 to 40 pills a day. Wrong answer. Exit Stage Right....
The day finally arrived for my appointment at The Parkinson's Institute. In the back of my mind, I was secretly hoping the Dr. had looked at my DatScan and was going to tell me that the diagnosis was wrong. I was nervous yet excited about seeing a new Dr. and at the same time, I was mortified and embarrassed that I had PD. The two women I met as I walked through the front doors for the first time were so warm and nurturing. I knew I was in the right place. When I was taken back into the exam room, I remember feeling a big lump in my throat as I waited for the Dr. A few minutes later, the door opened and in walked a very pretty woman rocking some stilettos! She proceeded to introduce herself to me and then sat down with all of my files. She cut to the chase very quickly so as not to keep me in suspense. I will always remember her heartfelt words, as she said "You do have Parkinson's. First allow me to say I am so very sorry. I am very very sorry". She spoke with so much empathy in her voice. I felt like she really got the magnitude of my diagnosis. She then said that there are a lot of promising clinical trials coming down the pipeline and that she would keep me abreast of any that she feels I would benefit from.
After doing an examination of my body (right vs.left side), she told me that she clearly understood that my body did not do well with Carbidopa/Levodopa, but that it was crucial to start some type of Dopamine enhancing medication, before the symptoms from lack of dopamine became even more pronounced. When I first saw Dr. "3", my symptoms were pretty bad. My entire right side was extremely rigid and weak. When I walked, I dragged my right foot and my gait was very slow and small. I felt very unbalanced on my feet and had actually fallen twice. Luckily, I did not get hurt with either fall, but it scared me big time. Dr 3 assured me that she was going to help me get strong again and with the right meds and healthy lifestyle, I would persevere! I remember leaving her office that first day so happy and hopeful! I felt she really "got" me and my struggles.
After we had been working together for almost a year, I began to notice her persona changing. She just seemed so stressed. Her happy demeanor seemed to have wilted. I wondered it she was leaving the Institute? Sure enough I received a letter from the PI and then a separate one from her explaining her departure form the clinic. At that time, as much as I wanted to continue on with her, she was opening up her own Concierge practice. Because it was a Concierge, she would no longer be taking insurance. Being that I was on a Medical leave from work, there was absolutely no way I could afford her. As sad as I was, I had to move forward.
Next up at base.... Dr."4". The PI called me to let me know that I would be seeing a new Dr. when I came in for my next appt. and that he was a big teddy bear! Um.... Not so much of a teddy bear, I have to say. His answer to me commenting that I would eventually like to be strong enough to go back to work, was that he was putting me back on Sinemet (the original medicine which made me so spacy and sick). Did he not read my files and did he not just hear me say ten minutes ago that Sinemet made me really sick? His answer was that by adding Sinemet and stopping Rytary, I would have no problem heading back to the grind. Are you kidding me? I saw him only once and that one time was more than enough. I went to the front desk to check out and I decided not to make another appointment with Dr.4. I called the PI the next day very upset by the way I felt snubbed by Dr. 4. I asked if there was any other Dr. I could see. I happen to have called at just the right time because they were in the process of bringing a new CEO/Movement Disorder Specialist onboard. She told me that I would love him and that he would really help me. Stepping up to bat.... Dr. "5" 💁 To be Continued....
Eenie Meenie Mineeee Moe.... Who is the Dr. that will show 🤷🏻♀️