PARKINSON’S DISEASE PROGNOSIS
A diagnosis of Parkinson’s disease is life-changing. But breathe. You are not alone. Fellow patients have identified the key questions that they dealt with during their diagnosis and in the days following.
I’ve been diagnosed with Parkinson’s disease. Should I get a second opinion?
Getting a second opinion is largely a matter of personal choice. But keep in mind that Parkinson’s disease is often difficult to diagnose accurately, particularly when symptoms are mild. There is no simple diagnostic test, and approximately 25 percent of Parkinson’s disease diagnoses are incorrect. Parkinson’s disease starts out with such subtle symptoms that many physicians, who are untrained in it, fail to provide an accurate diagnosis. In fact, even the best neurologists can get it wrong.
We would recommend that unless your doctor is particularly experienced in this area, you consult with a movement disorders specialist. A good neurologist will understand your desire for confirmation. A second opinion often brings peace of mind and can help you and your loved ones come to terms with your disease.
How can I cope with my diagnosis?
Breathe. You are not alone. There is much you can do to proactively affect the course of your Parkinson’s disease, and at least one very good reason to do it: Many neurologists report that symptom deterioration is often significantly slower in those who take a positive and proactive stance toward their condition than in those who do not. It would be ridiculous to suggest that a positive mental attitude is achievable all the time. But there are various methods that can help enormously to remain upbeat about life. To sum up:
- Find a doctor you like, and who will partner with you on an evolving treatment plan.
- Participate in research. Many Parkinson’s clinical trials — particularly those seeking treatments that could slow or stop disease progression — urgently need newly-diagnosed Parkinson’s patients. This window will close soon, so make the most of it while you can — for your own benefit and for other Parkinson’s patients. Fox Trial Finder makes it easy to find the trials that need someone with your specific medical history (whether you have Parkinson’s disease or not).
- Exercise. Many people cite swimming, walking and yoga as favorites.
- Engage in challenging activities that you enjoy: classes, artwork, travel, community work, Parkinson’s disease advocacy work.
- Stress reduction is a must — stress worsens every Parkinson’s disease symptom.
- Connect with others and seek counseling to supplement medical treatment for mental ills. Don’t let yourself become isolated. Pick up the phone! Send an email! Write a letter! Join a group! Above all, don’t wait for family and friends to call first.
- Learn all you can about your disease. Knowledge is power, and continuous learning keeps you empowered, informed and in control.
- Ask your doctors any questions you may have, and be your own advocate.
When I find myself feeling lonely, left out and forgotten, I pick up the phone and call a friend, who invariably says, ‘It is so good to hear from you! I have been meaning to call but the kids have been sick and the car is in the shop and I’m worried about Mother, and…’ Self-pity is dispelled the instant I’m reminded that everyone is engaged in the complications of life — and that maybe I can lend a sympathetic ear.
What does Parkinson’s disease mean for me?
Although there is no cure for Parkinson’s disease yet, there are a variety of treatments that can allow you to lead a fulfilling and productive life for many years to come. Many symptoms can be relieved by medications, though over time these can become less effective and can produce undesirable side effects, such as involuntary movements known as dyskinesia.
There are also surgical interventions, such as deep brain stimulation (DBS), which involves the implantation of electrodes in the brain. Because of the risks inherent in this type of treatment, most patients normally do not consider it until the medications they have been using no longer provide them with meaningful relief.
There is also much that you can do for yourself in terms of taking charge of your health and making lifestyle changes, particularly incorporating daily exercise, which will help in managing your disease. For further information, please refer to the “Living with Parkinson’s” page.
How will my Parkinson’s disease progress?
Parkinson’s disease is sometimes referred to as a “boutique” disease: It is unique to each person. You cannot predict which symptoms you will get, and when you will get them. There are broad paths of similarity as the disease progresses, but there is no guarantee that what you see is what you’ll get. Some people wind up in wheelchairs; others still run marathons. Some can’t clasp a necklace, while others make necklaces by hand.
It can be frightening to see the more pronounced symptoms of people who are in mid- or late-stage Parkinson’s disease, such as dyskinesia (the involuntary flailing or jerking body movements that can result from long-term use of levodopa, the most common Parkinson’s disease medication), freezing(the sudden inability to move) or festination (the short, almost running steps that seem to accelerate on their own). Awareness of such severe symptoms can understandably be upsetting, but remember that Parkinson’s disease is highly individualistic and your disease may never encompass any of these symptoms.
Will I die from Parkinson’s disease?
Most doctors say that Parkinson’s disease itself is not fatal. You die with Parkinson’s disease, not from it. However, as symptoms worsen they can cause incidents that result in death. For example, in advanced cases, difficulty swallowing can cause Parkinson’s patients to aspirate food into the lungs, leading to pneumonia or other pulmonary conditions. Loss of balance can cause falls that result in serious injuries or death. The seriousness of these incidents depends greatly on the patient’s age, overall health and disease stage.
How can I help speed a cure?
A Parkinson’s disease diagnosis is life changing, and at times, it can feel as if things are spinning out of control. One way to regain control is to get involved in the search for a cure by volunteering for clinical research. Volunteers are vitally needed for clinical studies, which are the last and critical stage of research before new treatments are brought to market. There is a particular need for newly-diagnosed patients and for people who don’t have Parkinson’s disease (referred to as “controls”).
First, check out Fox Trial Finder, a Web-based solution designed to connect willing volunteers with the clinical trials that urgently need them. Using state-of-the-art technology, Fox Trial Finder compares volunteer information, like location and medical history, with clinical trial eligibility requirements to find the best potential matches at study sites close to where you live. Visit Fox Trial Finder today to create a profile and learn more.
Additionally, learn about PPMI (Parkinson’s Progression Markers Initiative), a clinical study to find biomarkers of Parkinson’s disease. Currently, your doctor depends on the description you provide of your symptoms and their own examination in making decisions regarding your diagnosis and management. Imagine having an objective marker they could use instead, much like a glucose measurement in the management of diabetes. That’s the goal of PPMI.
Whether you yourself are facing the challenge of Parkinson’s disease, or are touched by the disease in another way, every single person can play a role in the search for a cure. The answer is in all of us.