It hasn’t always been the case, but I am quite happy to say that I have a Movement Disorder Specialist (MDS) that cares.
From the first time I met him a few years ago, I was impressed. He was quick, and busy, but would stop to listen when I spoke, despite my stutter or hesitation in speaking, and he actually hears what I am saying. Although he was the one who gave me my official diagnosis, he also gave me a feeling of empowerment – that I may have Parkinson’s, but he would give me the tools to fight it. No matter who diagnoses a patient with Parkinson’s, whether it be the family doctor, a neurologist, or your Uncle Bob, it is important to get referred to a Movement Disorder Specialist if at all possible. I have to travel over an hour each way to see mine, and I have heard of others who travel over two hours, but it is worthwhile. A family doctor might only see one or two cases of Parkinson’s in their career. Neurologist of course will see more, but they have many other issues to look at. An MDS specializes in Movement Disorders which include Parkinson’s.
Of course Parkinson’s includes much more than movement problems, but the MDS is the go-to specialist. Because MDS’s are so specialized, they can keep up to date with the current research, and are possibly even into doing research or clinical trials themselves. I am sure that there are some MDS’s that do not have the “bed-side manner” that is required, but I have been fortunate to have had two so far that do.
My current MDS is fairly young, but a brilliant man, who teaches, researches, and still sees patients. He is busy, but he cares. He has made me feel that he wants me to be ‘at my best’, and gives me a say in what options I would like for treatment. When I admitted that I was not exercising as much as I should be, he gently chastised me. And despite my Parkinson’s induced apathy, I was motivated by his comments to be more consistent with my exercise. And that is a good thing because proper exercise is very important in the management of the disease.
So let me encourage you to get an MDS if you don’t have one. And if you do, I pray that you have had as good an experience as I have. We have enough to deal with, without having stressful medical appointments too.