I met with my Movement Disorder Specialist – a neurologist with special training in movement disorders such as Parkinson’s Disease. He presented as being very intelligent, very up-to-date on information, and friendly. He spent well over an hour with me.
I needed this visit for many reasons, one being getting a second opinion. Another major agenda item for my visit was to discuss my medication situation. I had went in to this appointment with many mixed emotions. I needed affirmation that I do indeed have Parkinson’s Disease. Of course, no one wants to have Parkinson’s Disease, so I might have had a celebration if he said that I do not have it. Yet, it was also good to have a name for my illness/symptoms and to know that there is a treatment course. Therefore, if he would have said that I didn’t have Parkinson’s – that would have meant that I would have been back at square one with wondering what I had instead.
He affirmed that it was Parkinson’s.
Second, I wanted to discuss my medication – the Azilect. Prior to the visit, I didn’t want to continue with this medication – in which case I would have to continue to avoid certain foods, as well as worry about possible medication interactions that go along with being on an MAO Inhibitor. I also brought up recent studies that pointed to a better quality of life on an alternative regimen of Levadopa/Cardidopa (Sinemet). He listened to me and he was well aware of those studies. He also put me at ease about the food and medication interactions with being on Azilect as not being a huge concern – based on his experiences. He informed me that I could continue being cautious (i.e. making sure I was careful about how I responded to certain foods and definitely avoiding dextromethorphan), but he also cited his reasons for my remaining on the Azilect, based on studies and his experiences. He believes that I should not only stay on it, but to also try and gradually increase the dosage over the next couple of weeks.
I trust him – as he seems to have a gut feeling that the Azilect is the right medication for me and will help in my case – and so far, the Azilect has helped. He also told me that if there were problems that arise being on the medication, that he would work with me on changing or adding to the medication.
He answered many of my questions and I felt good about our visit. I could tell that he enjoyed researching things – as he demonstrated through lengthy and detailed descriptions about topics such as why freezing, face-masking, and other aspects of Parkinson’s occur.
He also was very positive – almost too much so, but I needed that optimism, because I want to stay positive. When I asked about how long he thought that I could continue working and functioning at my current level as well as other questions, he seemed to direct it back to the treatment plan of managing the illness with medication, exercise and accommodations. He didn’t hit me with dire statistics. At one point, he sounded so optimistic that it almost sounded as if I had just won the lottery instead of being diagnosed with a chronic, progressive disease. 🙂 Yet, when my wife (who was with me) chimed in with her optimism, he described himself as also being a realist and interjected that he was not going to “sugar coat anything” and that he may end up telling me things that might upset me. He also ordered a bunch of labs for me to do.
Now I need to work again on full acceptance and keep on moving on my plan of action. I will ignore that I have been turned down from 15 different disability insurance companies for being able to purchase short-term and long-term disability as well as long term care insurance. I will instead focus on doing what I can do now to keep myself as functional as possible. I will do what I can and accept the things that I can’t change – that is the plan anyway.