Post written by Dr. Karen Blindauer
Sometimes we hear about patients leaving an office visit and saying they didn’t really understand or remember everything that was discussed at the visit or they didn’t get their questions answered. That to me sounds like an unproductive doctor visit.
It can be helpful to have a family member come along to the visit to have another set of ears hearing the information. I also like to type up and print out an explanation of medication changes we are making, the reason behind it, the expected benefits, and possible side effects. I strongly believe that patients do better when they are well-informed. Fortunately at the Froedtert & The Medical College of Wisconsin Parkinson's and Movement Disorders Program clinic, we have many other resources for patient education to supplement the information given at the doctor visit. We have brochures and handouts, educational lectures, informative Web sites, productive and educational support groups, and a fantastic patient and education coordinator named Vicki Conte.
I like to give information and have my patients well-informed. On the flip side, however, I need good information from my patients in order to take better care of them. Sometimes a patient asks, “How Do You Think I’m Doing?” I may not have seen you for three to six months, or maybe even a year. It always helps for you to tell me how you think you are doing. The clinic visit is just a snapshot of how you are functioning. I may be seeing you on a good day or a bad day. It is very important for me to learn how you are doing on an ongoing basis during the times I am not seeing you.
Your friends and family may have a different perception of how things are going. Their input can be very important too, whether it is the same or different from yours.
I, of course, will have many questions for you. Asking about mobility, walking, falls, dizziness, coordination, mood, sleep, memory and thinking, bowel and bladder function are all part of a thorough assessment of your Parkinson’s disease. And then there is the good old UPDRS (Unified Parkinson’s Disease Rating Scale). Patients say, “every time I come, the doctor has me tap my fingers and feet and walk down the hall.” As repetitious as it may seem, the UPDRS is one tool I use to be able to answer the question, “how do you think I’m doing?” I can assess your tremor, your rigidity, your slowness of movement — even your balance — using the UPDRS. I come up with a score that is an objective measure to compare from visit to visit.
Some patients may fluctuate during the day and have good times and bad times. We call these motor fluctuations. A good part of the time, these changes relate to the Parkinson medications kicking in and wearing off between doses. Knowing approximately, or more precisely, when these fluctuations occur during a day can help me to better adjust your PD meds to get the smoothest and best symptom control throughout the whole day. I sometimes will ask my patient to keep a symptom diary or journal for a few days, where they would record when they take their meds, when they kick in, when they wear off, when and what they ate, when they had good function or bad function, or when they had dyskinesias. I don’t want to encourage all — or even most — of my patients to become too analytical about the hour-to-hour description of their days and nights. Focusing too much on the symptoms can be distracting or detract from your usual activities. However, for a “fluctuator” this information can be incredibly valuable at the doctor visit.
Some patients may have dyskinesias which are wiggly movements that are a side effect of Parkinson medications at their peak level and different than the more rhythmic tremor that occurs when the medications wear off. A patient may call and say “I am shaking all over all the time”, and they may be having tremors or they may be having dyskinesias. I or my nurse will dig into this further to figure out which of the two problems it might be. A problematic tremor might need a med increase; troublesome dyskinesias may need a med reduction. So, you can see how good or detailed information makes a difference.
You may have a lot of questions or concerns, but when on the spot, your mind goes blank. That is where a list of questions comes in handy. The “list of questions” is something you can create between visits. Keep it on the fridge or the night stand. When a question pops into your head that isn’t urgent, jot it down. Prioritize the list along with your spouse, child, friend, so that you have one to three “chief complaints” or pressing questions to start off with. The list will help to keep us both on track. While we try to get to all your concerns, time may run out before covering everything.
A current list of your medications including the dosage is crucial. Sometimes other doctors prescribe things that may interfere with your Parkinson’s disease itself or with your Parkinson’s medication. (Please see our “To Your Health” bulletin that lists contraindicated drugs
.) I really need an accurate list of all of your medications.
The visit will conclude with my reiterating my assessment of your neurological health and how I think you are doing. I will discuss any medication changes we might be making, and the pros and cons of that. When you check out in our clinic, you will be given a listing that includes those med changes. You will also have my typed instructions with more details to help you remember. I may have you call to check in with my nurse on how you are doing with the medication change. I may make other recommendations such as starting an exercise program or attending a support group. Vicki Conte, our Parkinson’s and Movement Disorders Program Coordinator is here to assist in getting you plugged into a variety of community options. It may be months until your next clinic visit, but you should never feel that our team isn’t available to you between visits.