Make the most out of your health team: by Dr. De Leon

As we continue to raise awareness for Parkinson’s and work together to #EndParkinsons, there are a few things I like to talk about. First, in order to have the best outcome with lower disability while living with PD is having a team of health professional to help guide you. The quaterback should be your neurologist preferably a movement disorder specialist or minimally someone who deals with Parkinson’s disease on a daily basis. However, having a great team at your disposal will be of no use if you don’t make most out of  your team. Yes, this means going to the doctor on a regular scheduled basis not just when we feel like it.

I know some people advocate patients having complete autonomous control of their health which includes choosing when they need to go or not to go to the doctor. We need to have both – we must be able to have accessible doctors when we need them as well as follow their scheduled appointments. I know having a chronic illness especially when not well controlled makes it extremely painful and tiring to continuously visit your physician and other health provides, to say the least. Yet, this is the time we need them the most.

As a physician and patient, I more than most understand both sides completely especially how expensive, time consuming, and down right difficult it is at times to see your physician. But, I also know that we even as a physician are not the best judges of what is going on with us and we need an objective opinion or set out of our situation to see the whole picture clearly. I think this is why sometimes we end up hospitalized, in the ER, or having more side effects than we should.

For instance, I am sitting here with walking pneumonia and unable to talk on a boat load of medications having thus far avoided hospitalization because serendipitously I was diagnosed in time, all because I am schedule to travel to be guest speaker. If I had not had commitment of speaking engagement I would not have been so forth coming in going to seek medical attention and probably I would have ended in hospital.

So, if you are like me and is having now problems but just had an appointment less than a week ago or not until 3 months down the road, what do you do?  A few years ago, you would just have left a message and wait patiently by the phone or perhaps had to go to ER if symptoms bad and no qui response from the physician/nurse practitioner etc.

however, we are living in a social media age. Email, Twitter, text messaging, FaceTime and patients portal are just a few of the methods available for prompt communication wih your providers. They can also help coordinate care and dispel concerns. Plus, you will have the benefit of having a permanent record of the exchange. However, using these methods requires some saviness on your part.

first, you must discuss with your providers what is their preferred method of communication. For instance, I can call or text my neurologist anytime I need. Some prefer to have their nurse or staff sort through messages.

next you need to be aware when or how often they check these messaging devices. If they only do once at the end of day- especially if they do less frequent you might need to still call the office as I do when I need something answered more promptly.

of great importance is knowning your providers emergency protol..which at least in this country usually involves dialing 911 first.

If you happen to live far away from your physician especially f in another state or country…discuss tele medicine or use of skype as communication.

Once, you decided on form of communication – the most important thing is sending a concise message focusing on a clear question or issue. Let them know if you need a response by a designated time and always put a subject line when sending email or text. If sending copies of other physician reports etc make sure your links are correct and go directly to subject  matter .


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