It is now mid February, 2020. I am taking a daily cocktail of way too many meds again. The side effects I am experiencing are horrendous (just like before). But this time, I am seeing things that are not real. One morning while taking my meds, I had a moment of clarity. I took a good look at all of the pill bottles sitting on my kitchen table and thought to myself "What the F am I doing here? Not only have I become a pill popping dispensary, but now I am hallucinating, on top of everything else". This realization was my breaking point. Yet again, I called my friend (for the second time) to come and get me and rush me to the ER. Keep in mind that Covid was about to blow up the following day so nobody.... And I mean NOBODY would be admitted to the ER unless they were showing signs of Covid. As I was not showing any signs, I had to plead with the officer perched right outside of the ER to let me in. He clearly could see that I was in severe distress. He went and grabbed a wheelchair (as I was barely able to stand) and rolled me into the ER himself. Once inside, it was like a ghost town, with nobody sitting in the waiting area and nobody manning the desks. The officer who had wheeled me in let me know that someone would be right there to help me. Since I did not see anyone, I pleaded with him to go and find someone to help me before I lost consciousness. He finally did find a nurse and then told me that he was needed back outside.
I remember the nurse who came out to greet me. He immediately took me back, as I was extremely pale and could not stop crying. Once he found a space, he was kind enough to fill out the intake forms for me, as my right arm was shaking uncontrollably. He told me how lucky I was to get in, as Covid was about to explode. He then said he was going to start an IV drip and draw my blood. I did not want an IV, and fought it for quite a while. He finally made it crystal clear that without it, I would eventually lose consciousness because my blood pressure was dangerously low. I finally gave in because I knew he was right. Since my arm was shaking, he was having a tough time trying to put the IV in. He asked me to try and stop shaking, at which point I told him I had PD. I have a feeling that he had never experienced anyone with PD before. Kudos to him for staying with me until I was released later that night. I remember a youngish female nurse peeking her head in (my curtain was drawn for privacy) and looking totally disgusted with me because I was shaking. She only peeked in to ask my nurse if and when he was going to take his lunch break. He replied by stating that he had already been working for 9 hours and could really use a break right then. He also asked her nicely if she could take over my care until he came back from his break. In a very loud voice, she said "NO WAY!! NO THANKS"!! with a smirk on her face as she stared at me. As horrible as I already felt, she was just the icing on the cake. (Once all was said and done, I did report her). I have no doubt that because of Covid, nothing was ever done about it.
After a battery of tests to rule out everything else, the diagnosis yet again (like the first time I was hospitalized) was severe dehydration caused by too much medication. SO.... Two IV bags of fluid later, I was no longer dizzy. When the nurses felt I was strong enough, they asked me to leave (because of Covid concerns). The ER is a very scary place, because obviously people are there when they are very ill. The particular day that I was there, there must have been at least 25 people around me of all ages who were showing signs of Covid. I felt like I was in the middle of a horror movie, as everyone looked really pale, very spacey and were all stop coughing. Thankfully, everyone had a mask on. Once they released me to go home, I remembered that a friend of mine worked as a volunteer in the actual hospital. I texted her to see if she was in fact, working that night and luckily for me, she was! She drove me home.
Now it is time for my monthly visit with Dr. 3. My frustration level with her is at a breaking point. She has no idea what I have been through in the last 30 days or even that I ended up in the ER yet again. I had finally gotten to the point where I had given up on groveling and pleading for help. To be honest, I do not think she really cared one way or the other about my well being or what was happening to me. The old saying "Actions speak Volumes", comes to mind. The day of my appointment, she was running late, as usual. Her office was quite a drive from my house, but I always made sure that I was a bit early each time. It is called respect. She was consistently late and with each appointment she arrived a little later than the appt. before. I am pretty sure she had no idea that her office manager was informing me of her whereabouts each time. My favorite one was that she was at the car dealership and actually had just pulled into the dealership when she was supposed to be beginning an appointment with me.
For this particular appointment, one of my friends drove me there. Not only did he have to help me walk the short distance from my front door to the car (I was at risk of falling), he also had to help me get into the car safely. Once in, I laid back with a blanket around me and my pillow to rest my head on. Although the ER had rehydrated me, I was still having side effects from the multitude of meds I was on. The fatigue I felt was debilitating. Beginning on the morning after the ER visit, I started to wean myself off of Amantadine, without talking to Dr. 3 first. I had checked with the ER Dr. and my pharmacist on how to do it safely. This was the first step in taking my power back. It was time to finally find a top notch Dr. who would look at me as a human being rather than as a science experiment to be played with.
Because of Covid, there was no-one else in the office that morning besides her front desk manager and myself. Her office was in a very charming little house that had been converted into office spaces. I asked her office manager if I could lay down on the couch while I waited for my Dr. to arrive (who again was running very late). She of course said yes. When DR. 3 finally arrived, she took one look at me and whispered "What is this?" to her office manager. I could tell by the tone of her whisper, that she was displeased I was laying on the couch. The conversation went from bad to worse quickly. She clearly did not think that there were any options left for me with medications, so she said that she was sending me to Stanford to have an MRI and then a consult for the DBS. In her words regarding the DBS, "It is just a little procedure". I will leave it at that.... I left her office feeling totally defeated, uncared for and done. I knew at that moment that it was truly time to take my life back. Next stop..... Stanford.... But not to schedule an MRI or a consult for the DBS. To be continued.....
*This entry is not meant as an attack on this Dr. I am just simply writing about events that transpired while I was under her care. My main goal here is to help those of you who are newly diagnosed so that you do not go through what I have been through to get to where I am now. You must be very mindful of who you allow into your circle. Rule of Thumb: Your circle should consist of those who love you and only have your best interests at heart. Do your research, ask for help and learn as much as you can about PD and options for treatment. You will be overwhelmed in the beginning, but it does get easier as you begin to wrop your head around it all! Please feel free to reach out to me at any time. No question is silly or will be frowned upon. I am here to help and I would be honored.
I have made a promise to myself to Never
land here again because of lack of care 🚒