Today is Monday January 18, 2021. I have put off writing this particular entry since August of 2020. I have not wanted to relive the "nightmare" of events that began to unfold soon after diagnosis. But I do realize the whole point of writing about what I have been through is to hopefully help you or anyone you may know who is newly diagnosed and does not know where to begin. I feel for you and am happy to answer any questions you may have. As far as the particular Drs. I will be writing about, I have chosen to leave their names out, because I feel it is the right thing to do.
To bring you up to speed.... After having a DatScan in September of 2016, my biggest fear was realized when I heard those three words that nobody ever wants to hear "You have Parkinson's". My first thought was "My life is over" followed by tears that went on for days. G*d Bless my Neurologist for trying to explain to me that it is not like the old days where there is nothing that can be done to help slow the progression or to help much with symptoms. Dr. "A" assured me that he would send me to the best for help and how lucky I was to be entering into this in at this time in history because so many breakthroughs are coming down the pipeline. He also explained that because I am young and in such stellar physical health, I already have the most important ammunition in fighting the fight. He must have said at least three different times to make sure I stay fit and even ramp up my exercise and cardio on a daily basis. Of course, all I could see in front of me was gloom, followed by doom.
Luckily for me, my Neurologist is extremely proactive and clearly recognized that I had tuned out. He called the Parkinson's Institute on my behalf and secured an appointment for me. Supposedly, they were top notch. Even though he made me an appointment, he was concerned because I had to wait 6 weeks to be seen there, as they are so busy. He clearly did not want any more time to pass without help (meds). I asked him why he was not going to be my treating Physician and again, he said that because I am young onset PD, he wanted to send me to someone who specializes in Movement Disorders and is up to speed on current clinical trials and breakthroughs. He then called a local Movement Disorder Specialist and booked me an appointment for the following week (so I could be seen by someone who might be able to help me until my appointment at the PI). To try and ease the symptoms I was already having, Dr. A put me on two medications to try and combat some of the symptoms (while I waited for my first appointment with a Movement Disorder specialist) the following month. I started the Neupro Patch (which I am still using) and Azilect (which I was on for quite a while), but with all of the med changes I went through, Azilect became way too strong for my body.
I went to see the interim MDS the following week. Unfortunately for me, his bedside manner was lacking, but I thought he is the expert, so I will hear him out. First, he did all the simple tests that the other two Dr's. had done. One of those assessments involved pulling me off balance as he was standing in back of me, by pulling on my shoulders. I do not think he realized how strong his grip was on me. It caught me completely off guard and frankly, felt unsettling. He agreed with the other two Drs. that the diagnosis was correct. Before he could say anything else, I mentioned that my body is extremely sensitive to medication and when a med is too strong for me, my body reacts in a big and oftentimes scary manner. He ended up prescribing Carbidopa/Levadopa (a small dosage to start with). I was to take this new pill and continue on with the Neupro Patch and Azilect. I would come back to see him in four weeks.
Since I had nothing but time on my hands (I was now on a medical leave from work), I took a trip down to Palm Springs to visit with my dad and step mom. I had just started the new medication a couple of days before I got to my dad's. The first day I was there, I went swimming. Once I was done, I took a shower. After I dried off and started to get dressed, my body literally froze (I could not move). I completely panicked and dragged myself into my stepmom's room for help. She suggested going back into the pool to try and loosen my body back up. I actually did just that and I felt better when I was done. Meanwhile, I was now terrified because my body was out of control. I reached out to my Dr the next morning. He said this is very normal, as my body begins adjust to the medicine. It would have been nice if he would have given me a heads up about this, before he prescribed it for me. Two weeks into the new meds, I increased the dosage by a "hair". Bad idea! By the time I went back for my second appointment with him, I felt like I was almost in a drug induced coma. I was barely functioning and slept a lot. When the Dr. entered the room, I told him that I felt like I was taking too many pills. His answer to that was "That is nothing. I have patients who take 30 to 40 pills a day". That answer seemed so insincere and in my humble opinion, the very last thing you should say to anyone who has just had their life turned upside down. Needless to say, that was my last meeting with him. To be continued....
After hearing those three dreadful words, this was my first reaction. I was done with life. If it were not for my brother coming up and surprising me for my birthday (which was a couple of days after the diagnosis), I do not know what would have happened. Never Ever Give Up. You are Stronger than you think 🙏🏼