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The Parkinson's Institute

So.... Movement Specialist #3 has confirmed that I do in fact have Parkinson's. He wants to start me on meds immediately! Dr. #3 put me on Carbidopa/Levodopa (the standard P.D. staple). I was to come back in a month to report on my progress. He also wanted me to increase the mg. after two weeks of starting. The Neupro Patch would stay the same at 4 mg. As much as I did NOT want to take any type of med that would affect my brain, I hesitantly started the meds. I was so new to all of this and beyond frightened, that I couldn't see past the next second. No change within the first two weeks so I increased the dosage like he had asked. BIG mistake for my sensitive system. I went from fatigue and slowness (before meds), to feeling like a zombie. Within a couple days of the med increase, I just stayed in bed in an apathetic state. As this was my first time dealing with a new Dr. and a very scary condition, I felt overwhelmingly lost and unsure of how I was supposed to be feeling. A month later, I went back to see him. My biggest concern besides the fact that I had PD and was in an almost catatonic state, was that I felt like a medicine cabinet. I remember telling him that it seemed as though I was taking a lot of pills (I was taking 2 meds at that time)..... Carbidopa/Levodopa and Azilect. Oh.... and don't forget the Patch! His response to my comment was that it was nothing compared to some of his patients who took 20 to 30 capsules a day! That was all I had to hear, and I swore never to go back to him again. You don't say something like that to anyone, let alone someone like me who is already terrified of what is going to happen. The good news is that he weaned me off of Carbidopa. Now I had to wait until my appt with a new highly recommended Movement Disorder Specialist, at the Parkinson's Institute.


Meet Dr. #4. Without naming names, I finally had my appt. with my new Dr. I was still hopeful that she would look at my DATSCAN and tell me that the diagnosis was wrong. Whatever it was, it would be easily curable. Unfortunately, she agreed with the other 3 doctors. She walked into the room and gave me a big smile while she introduced herself. She sat down and there was an uneasy silence for a second or two. Then she said "I am really really sorry to tell you this, but it is PD. She actually told me a couple of times how sorry she was. I will never forget the way she spoke to me with such empathy, kindness and understanding. I just put my head down and cried. Like the other 3 Drs. before her, she did the same simple tests to see how my body was doing. At that time, my right side felt very detached from the rest of my body, so I had no idea that I was literally dragging my right foot when I walked. Not to mention how spacey I felt. She immediately changed things up. I was to stay on the Azilect and the Neupro Patch and add Rytary (a true life saver for me). In essence, Rytary is Carbidopa/Levodopa, but is time released and state of the art for those of us who can tolerate it. I started out on a very low dosage as I told her about my experience with Carbidopa/Levodopa. I also made sure that she was crystal clear on how sensitive my body is to any foreign substance and that when it rejects medication, I get very very sick. Just like my Neurologist, she also mentioned how many advances have been made since the old days. She talked about exercising and why it is so important to keep on keeping on. She was very happy to hear that I had been very physically active for most of my life and that because of this and my young age, I would do really well. The criteria I needed to follow were simple ones. Exercise, especially when I don't feel like it. Stay ON TIME with the meds and stay off of the Internet. Stay of the the Internet?? I had mentioned that I had been looking online at support groups and articles on PD. What I found is that there were horror stories from people (in online support groups and negativity like I have never seen before. Upon telling her this, she said that half of what I see or more isn't real and to stay away from that. I absolutely agree with her. I have never looked at those kind of websites since. I was to come back in a month to see her and we would talk about my new med regimen and how I was feeling. I actually left her office feeling energized emotionally and that there was hope, where I had only felt darkness. To be continued....

💜 There is Always Hope. Live through Faith and know that all will work out 💜


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