by Lance Gershen, Co-president, Parkinson’s Network of Mount Diablo
I am writing about my journey with Parkinsons Disease and some of the issues it brings up. I’d like to focus on the doctor patient relationship, having been a physician for 47 years and a patient with PD for almost 5 years. At the heart of treatment for PD is the doctor-patient relationship. For truly effective care this must be a partnership. As we the patients and our families deal with day to day symptoms we also rely on our medical caregiver. We have to function as a team. Some actions I found useful are to bring your caregiver to as many of your medical appointments as possible. Because the 3 of you have to track how you are doing. Some things are easy to show your doctor like a tremor, some harder like our day to day balance or harder still our moods and cognitive skills(every visit they ask me who the US President is – I’d be way impaired to miss that one). I also find keeping a journal is very useful especially when highlighting introduction of new treatments or medications and the changes that brings. And don’t forget to bring your journal to your doctors appointment(yes we are also forgetful). Also keep a list of your medications and doses in your wallet or purse, this comes in handy in emergencies or when you travel.
When looking for a doctor you need one who knows PD this can be a general practitioner, internist, neurologist or movement disorder specialist. A movement disorder specialist is a neurologist who has done a fellowship in diseases with abnormal movements and usually specializes in that practice. Some neurologists are great at primary care others not so. There is a teaching from Hippocrates that it is more important for a doctor to know about the person who has the disease than the disease a person has.
When discussing medicines you take let your doctor know about any OTC(over the counter) supplements or vitamins you take. Many of us take medicines not proscribed by a physician. Remember supplements are not regulated by the FDA( Food and Drug Administration). Supplements are not tested for safety or efficacy. A recent study has shown approximately half the pills tested did not contain what was on the label. Another found about half had additional non labeled contents that could be harmful. Poor manufacturing(blame China where a lot of generic and OTC medicines are manufactured). Some ingredients can specifically cause problems for PD patients that can even be life threatening, like St. Johns Wort. So again let your doctor know everything you are taking or bring them along to your visit.
I’d also like to touch on diagnosing Parkinson’s Disease. I’ve heard lots of stories filled with resentment and anger at the medical community for taking so long to make the diagnosis. Remember there is no specific diagnostic test for PD. It’s a clinical diagnosis meaning what the doctor finds in history and physical examination makes the case. Consider that if the MD makes a diagnosis too early he has given you a diagnosis of a neurodegenerative disease without a cure. Not something for the doctor to take lightly. Usually waiting does not effect the prognosis(outcome) as would happen with a diagnosis of cancer.
Also don’t be afraid to ask your doctor for a second opinion if you are not confident of the diagnosis, most insurance plans will cover this and sometimes we need a true specialist or high power medical center.
Lastly I’d like to thank the PD community for all that I’ve learned from them. The dignity and courage they show on a daily basis is inspiring.