“In your battle with Parkinson’s Disease, knowledge is power and attitude is everything."
Despite the progression of my disease and the number of years since my diagnosis at the age of 27, I continue to remain productive, active and engaged. The success I’ve had in managing my disease is undoubtedly in part, due to my educational background. As a physician recognizing and managing symptoms and side effects is somewhat manageable which has been a significant advantage. But a medical degree is not a prerequisite to becoming an informed patient.
So why get educated, why is knowledge power for you as a patient? Isn’t that why we have doctors - to know what to do? Of course we rely on the expertise of our physicians to guide us in the management of our disease. But there is a problem – we have no objective marker or measurement when it comes to Parkinson’s that will assist them in making those decisions. Unlike hypertension where your doctor can measure blood pressure or diabetes where they can refer to glucometer readings to give them information about your condition, there isn’t anything like that for Parkinson’s. So your physician relies on his clinical exam, perhaps a measurement scale and most importantly your patient narrative. In fact, physicians place a lot of weight on patient’s reports when making treatment decisions.
Recognizing and relaying what is important and relevant information to include in that narrative, is vital. This effective communication requires education - about Parkinson’s disease in general as well as some of the subtle nuances of this illness and its treatment.
Of importance is to understand which symptoms are secondary to your Parkinson's. We all have heard or read that this progressive neurological disease that presents with 4 cardinal signs: tremor, bradykinesia, postural instability and rigidity. But also be cognizant of the non motor symptoms that occur in PD such as sleep disorders, pain, constipation, urinary urgency and incontinence, hyperhidrosis (excessive sweating), oily skin, excess dandruff, mood disorders (such as anxiety and depression), cognitive changes, orthostatic hypotension (lightheadedness upon standing), speech and swallowing difficulties as examples. A lot of these non-motor changes don't respond to dopamine replacement unlike the classic symptoms so it's important to first recognize the issue and then relay information about the symptoms to your physician so appropriate management can take place.
Also of vital importance is to understand your medications, how they work and their potential side effects. It’s a very fine balance between taking enough medication to control bothersome symptoms yet not too high a dose in order to avoid debilitating side effects (which can be worse than the initial symptoms being treated). That is why not only recognizing symptoms you are experiencing but also when they occur in relationship to your medication is invaluable, helping to distinguish between symptoms of the disease versus side effects of the treatments. This will help define the situation and the appropriate management - a medication increase or a lowering of the dose or change in the dosing schedule - all of which will result in very different outcomes.
Managing your Parkinson’s disease can be a difficult task both for you and your medical team. But knowing what to look for and what information to convey is vitally important. Becoming knowledgeable allows you to take a more active role in disease management and that translates into better outcome. A recent review indicates that patient education can have a positive impact on patient satisfaction, health-related quality of life and mood, adherence to treatment plans, disease self-management skills and overall improved medical outcomes. This knowledge may be gained from your medical team, informative community or online resources and other educational materials.