I’ve written out my list of what is going right and what I’m concerned about with this thing called Parkinson’s Disease. It is in the form of an index card with my microscopic letters formed into words that will help me to not forget to mention something during our visit. I started doing this after my third visit with Dr. Jankovic at the Baylor College of Medicine in Houston, Texas. The first visit, I had no idea what was going on,but thanks to my wife for taking notes, at least we had a treatment plan. The second visit six months later, it all went well, or so I thought, because I wasn’t having any issues with medications or symptoms and everything was in order. That is when I started thinking that I should have mentioned…., or asked him about…., or give him an overall assessment of my condition and then include some of my concerns.
My wife’s response when my local neurologist, Dr. Abijay, shared that there were good movement disorders specialists around, but in his opinion the best in the world when it came to treating Parkinson’s Disease was in Houston, was, “We’re going to Houston”.
That decision made at that moment has never been regretted because of the quality of care that I receive that allows me to have the best health-related quality of life possible, while living with an incurable disease. Often I get asked what it is like to be a patient of Dr. Jankovic. It is then that I realize that I’m truly blessed to have had him placed in my life, at the right time, with the best results possible, because my wife has said on many occasions that we couldn’t have done any better. My most common remark is that it is in the communication that we have with each other, that allows us to tweak my medication regimen for optimal results.
I went to see Dr. Jankovic recently. For me, it is a 1,000 mile round-trip. Flight out to Houston early, lunch, appointment with him, return to airport, and a later flight back home. I’ve done this for several years now, twice a year, but I wouldn’t have it any other way. (I take that back. Once we get the issue of telemedicine worked out with the outdated policies and guidelines that prohibit a physician from treating anyone that is not physically in the state in which they are licensed, or having literally touched the patient for a physical exam in order to be reimbursed, we can then base my visits over the computer.)
This last visit had me a bit concerned with some excess movement in the form of dyskinesias, a bit more of the tremors than I have been accustomed to, and the issue of depression that has reared its ugly head in the last couple of months. We exchanged hello’s and how is everyone doing and caught each other up on the latest on the advocacy front. I proceed to tell him what has been concerning me (based on my index card information), ask him for his opinion on adjusting the dosages on a couple of the medications due to not feeling that I’m getting the maximum benefit. The words that he proceeds to say are, “Let’s talk about this…” He didn’t say, “This is what I want you to do”, or “I know what I’m doing so just listen and do as I say”, or anything else except, “Let’s talk about this…”
He asked more questions about what I was experiencing and the effects of the medications and explained that he felt that what I was dealing with was not what I initially thought. He made his recommendations, asked me if I felt comfortable with them, to let him know if the changes weren’t to my satisfaction symptom control-wise, and that there was another medication that we could try if needed, and then the last words that he says to me every single time I see him come, “Can I see you again in 6 months?” Not, “I’ll see you again if you want to come all the way back”, not, “It’s up to you if you prefer to see someone closer to home”, or, “If your’e not happy, there’s not much else I can tell you…”
Needless to say, I’ve been blessed beyond compare and I think he’s a pretty special person. So, if you ask me why I constantly advocate for all people living with Parkinson’s Disease to have the best medical care possible in order to have the best quality of life possible, my response may very well be, “Let’s talk about this…