You must be actively involved in the management of your disease in order to live well with Parkinson's. Actively seeking solutions to problems that arise and taking on a proactive approach to life in general is vital. It takes work be it physical commitment or emotional growth to overcome the hurdles that this disease challenges us with.
Unfortunately at this time, there is no cure for Parkinson's and it falls on us as patients to do whatever we can to optimize our quality of life. You must for example incorporate those lifestyle changes that you do have control over - such as reducing your stress, maximizing your health in general through diet and exercise and proper sleep. Be proactive when it comes to self-care. Keep up with your medical appointments. Take your medications on time. Build it into your everyday commitment because scheduled consistency is so important. Through these means you can have significant influence on the social, emotional and physical impact of this disease.
In other words take control of those variables are within your control. I may not have control over my diagnosis or my symptoms much of the time but I do have control over certain aspects that if optimized, can improve my life experience.
Having lived with this disease for over 16 years, I have been privileged to having become a part of a uniquely supportive Parkinson's community. This impressive group is made up of people of differing backgrounds, a spectrum of age, ethnicity, vocation and geographic location. We are all united by this challenge that we face. We are there to support each other through the difficult times and also share in our determination not to let this disease win, to define us.
Many of those in my community were faced with this diagnosis at a young age and we share the trials and struggles that are unique to our stage of life. These disease management and psychosocial issues may differ from our older counterparts but I feel an equal bond with those in my circle who may be a little older but who are on this journey as well. We are not alone.
More than 15 years ago, at the start of my medical career and expecting my first child, the neurologist confirmed what the first clinician had suspected - the tremor I had been experiencing over the preceding year was Young Onset Parkinson's Disease. Life changed forever as I now faced a progressive neurological disease in my twenties. Soon after my own diagnosis, my father also received the same news. He too had Parkinson's, yet there was no previous family history as far as we could recall. But still, genetics seemed to have loaded the gun but what exactly pulled the trigger?
As a physician I've seen first hand the role that environment and genetics play in determining our health. In fact the cause of all illnesses can really be placed on a spectrum with environment and genetics contributing to varying degrees. Reality is that adverse environmental exposures very often pull that proverbial trigger and therefore we must be very vigilant in reducing our exposure to environmental toxins both for ourselves and our families.
Diagnosing Parkinson's disease is not an easy process particularly since there really is no definitive test for this illness. As physicians we rely on our patients' descriptions of their symptoms, what we see on physical exam and we sometimes require neuroimaging like a DaTscan to help decide if the diagnosis is indeed Parkinson's. As patients we often go through a time of uncertainty particularly early in the disease or if we have any atypical features. All in all, it can be a frustrating and frightening time as we are put through reams of clinical testing as our bodies seem to disengage from our brains.
Fear of the unknown and trepidation about the possibilities are very real issues we face during this process of diagnosis. In an effort to provide some insight and hopefully allay some of that anxiety, I've started a patient's guide to Parkinson's disease which discusses the diagnostic process in general, symptoms of PD, the signs seen on physical examination, the neuroimaging that is sometimes necessary, the differential diagnosis that physicians consider and how this whole process will be revolutionized with the discovery of a disease biomarker.
I hope this proves to be a valuable resource and I will continue to expand on its contents. Suggestions and feedback always appreciated.
Parkinson's Disease is a challenge to manage both for the person affected as well as their physicians. The line between symptom control and medication side effects is a fine one. Add into the mix fluctuations in symptoms due to external factors like sleep, exercise, diet and stress and it becomes even further complicated. Optimizing your management involves recognizing certain aspects of your disease - both symptoms and side effects - and any relation they may have to your medication schedule. The importance of distinguishing between two abnormal movements is explored in "Dystonia vs Dyskinesia - An Important Distinction".
Educating yourself about what's important in facing the challenges this disease presents will ultimately improve your quality of life. In the weeks ahead, I want to start at the beginning - the time of diagnosis. What are the symptoms and signs that your physician looks for? What are the standard tests and imaging studies? What do the Parkinson's evaluation scales mean? What else could it be if not Parkinson's Disease? Looking forward to the conversation.
As the new contributor to the About.com Parkinson's site, I would like to say that it is an absolute honour to be able to connect with all of you in this way. As both a physician and a person with Young Onset Parkinson's Disease diagnosed at age 27, over 16 years ago, I have learned a lot about how to cope with this challenge. This is not a simple disease, as I discussed in my first article, "The Complex Etiology of Parkinson's Disease" and presents with not only the motor symptoms we are familiar with but also with many nondopaminergic symptoms such as pain, mood disorders and sleep problems to name a very few. I hope to address these issues and have begun with "Dealing With Sleep Disorders in Parkinson's Disease". I also hope to provide you with a framework to manage your illness and provide information that helps to enrich your life experience and improve your quality of life. To this end I've posted information on how to "Build Your Support Team". I also hope to provide more topical information such as the blog on "Pesticides and Parkinson's Disease". Much more to come...
A recent study conducted by researchers at UCLA looked at a group of patients with Parkinson's Disease compared to a control group and investigated their levels of pesticide exposure at home and in the community. They found that 11 of the pesticides they tested, increased the risk for Parkinson's Disease. The most alarming result was that the level of exposure to these chemicals that caused an increased risk was actually much lower than the concentrations normally used. These pesticides currently are being used in parks and recreational areas, to control pests inside homes and other structures and have penetrated our food chain. This broad use unfortunately means that there is an increased number of people at risk.
All these pesticides seem to do their damage by inhibiting ALDH (aldehyde dehydrogenase) an enzyme that converts aldehyde to a less toxic agent. This is an important process because aldehydes are highly toxic to those cells responsible for producing dopamine. Dopamine loss is of course a central cause of the symptoms of this disease.
Researchers found fairly commonly that there are individuals who carry an abnormal ALDH gene and in those people exposure to these pesticides put them at a 2 to 6 fold increased risk of developing Parkinson's Disease compared to those without the mutation.
This study adds to our understanding of what role environmental exposure can play in the development of Parkinson's Disease particularly in genetically susceptible individuals.
The abstract can be found on the Neurology journal website.
Actor Michael J. Fox, who has been the most famous promoter of Parkinson's disease research since his diagnosis 12 years ago, recently published an autobiography that makes jokes of the past and has a hopeful look at the future.
In a recent interview on Good Morning America, Fox discussed the book, which is what he says is a letter to those graduating from high school from a high school drop out.
You can read an excerpt from the book, 'A Funny Thing Happened on the Way to the Future,' and watch his interview with George Stephanopolous on ABC.com.
A recent study published in the Neurology Journal found longtime smoking reduces the risk of developing Parkinson's disease.
The study looked at the lifetime smoking history of more than 300,000 people, and confirmed the inverse relationship between smoking and Parkinson's disease, established in earlier scientific studies.
But don't be so quick to light up those cig's.
Researchers say they've found a critical new piece to the puzzle: It appears to be the length of time one has been a smoker - not the number of cigarettes smoked - that has the most effect on disease risk reduction.
"Nobody should advocate smoking to prevent Parkinson's disease," Dr. Honglei Chen, the lead study author and a tenure-track investigator at the National Institute of Environmental Health Science, told CNN. "It's important to make that very, very clear."
Smoking continues to be the leading cause of preventable death in the United States and has been linked to an increase in heart-disease risk, stroke risk, and several types of cancers.
There's a new treatment option available for patients with early Parkinson's disease. Mirapex ER is the "extended release" version of Mirapex, a drug that's already on the market. The difference between the two is that Mirapex ER only needs to be taken once a day, while Mirapez has to be taken three times daily.
Studies comparing the two drugs found that one daily dose of Mirapex ER improved Parkinson's symptoms to about the same degree as the three-times-daily Mirapex. The potential side effects of both drugs are similar: nausea, sweating, sleepiness, hallucination, dizziness, constipation, vomiting, fatigue, muscle spasms, and dry mouth.
Talk to your doctor about whether Mirapex ER may be an option for you.