In the past, one of the biggest challenges non-neurologist or/and non-movement disorders physicians have faced in diagnosing PD has been the lack of uniformity in disease presentation. While variability in response to treatment has been a challenge at times for those of us in the field of Parkinson’s disease. Although, no two individuals are ever really alike in the last decade,,we have unveiled many similarities in presentation and treatment response across different subgroups of Parkinson’s population (i.e. young onset vs. older typical onset; women vs. men; various ethnic groups) which can help guide treatment Plan. Of course, we are always pushing the envelop of neuroscience and knowledge to find that unique key element that can leads us to a more precise diagnosis and treatment of those living with PD.
Recently, as you might be aware, everyone seems to be talking about “individualized medicine” but although we have been attempting to get more precise data and information by studying subsets of PD population through various means like the Large- PD genetic study spear headed by Dr. Mata and supported in part by Parkinson’s Foundation previously known as PDF; the reality remains that we simply do not have the correct tools to pull such a feat. We are not able to match particular medications with specific mechanisms of action with underlying PD causes at this time. This is the level of medicine that we would all love to achieve in the near future. In the meantime, we can all do our part by participating in genetic studies, research trials,pregnancy registries- because no state or government registry exists for PD meds-you can send your information to the pharmaceutical companies makers of your own PD medications and ask your physician to keep a log which you can provide and update.
So until we have the right tools for the trade to really be able to provide “individual medical care,” what can we as patients and caregivers do to ensure that we or our loved ones receive optimal care?
First, we have to convince our government and healthcare providers (i.e. insurances) that in order to achieve optimal care one must be intimately familiar with the subject they are treating. This degree of knowledge only comes from having continuous rapport with the patient which develops over time- i.e. continuity of care is vital !
One then must begin by asking the right question
- Do I have idiopathic Parkinson’s disease vs. Parkinsonism vs. Parkinson’s plus syndrome?
- If not sure what can we do to further determine this?
- Once diagnosis has been confirmed – what drugs will work best for what I have?
- Are there any drugs that are more likely to be beneficial or more likely to cause me problems?
This is where having an open communication, good rapport, and a long history with your physician that would greatly influence the choice of medication and treatments offered to you. For instance, if you already have tendency to gamble, love to shop a bit more than others, or have some underlying ocd’s (obsessive compulsive traits) perhaps adding medications like Mirapex may not be the best choice. Likewise if you are a ‘collector’ by nature dopamine agonists which increase pundding ( hoarding in a systematic organized fashion) may not be the route unless clear supervision is provided. Also if you already experience daytime sleepiness may take into consideration before starting dopamine agonists unless you also add medications like Provigil and Nuvigil and other stimulants like Adderall to counteract sleepiness and stimulate alertness.
In the same manner we should be aware of potential adverse reactions. All meds have side effects and just because it is listed does not necessarily mean you will have – however this is where knowing yourself and something about gender is beneficial –
We know that in general women have more sensitivities, side effects and adverse reactions to medications; may require much lower doses than male counterparts with similar symptoms.
- How are these meds going to impact my other medical issues (e.g. diabetes, high blood pressure, migraines, etc.) or interact with my other medications ( make them to be ineffective, or increase their dose and thus ?
- How will the medications affect my daily living? ( not just in terms of side effects but dosing -2 times vs 5 times a day?)
- Is it going to interfere with becoming pregnant or impact my pregnancy?
- Will these meds alter my menstrual cycle?
- What is the cost? Although this is extremely important this should not be the limiting factor once you consider the fact that a lower costing medication can result in multiple sick days, doctors’ visits or hospitalizations vs. a higher cost which will provide better quality of life and decrease medical cost in the long run.
In the end although we have a slew of medications which have proven to be efficacious not all medications are an ideal fit and some should be avoided based on our own personal medical history as well as that of our family. One way that we can begin to help ourselves and our doctors to better choose the correct treatment plan is perhaps request that we have some genetic testing. Since more than 75% of individuals have variations that determine how our bodies respond to and process drugs ( all types, recreational, prescribed and over the counter) some of which can lead to serious adverse reactions requiring hospitalization as it did me recently where after years of taking Azilect and Neupro I developed severe arrhythmias and severe malignant hypertension causing transient ischemic changes ( mini-stroke). According to ones site serious drug-related effects are the 4th leading cause of death in the U.S. One way we can added information is through a simple genetic test YouScript which involves a painless check swab which then shows your own unique drug-processing genetic characteristics. (several companies perform this- e.g. Inverson Genetics, Genelex