Parkinson Association of Northern California
"I AM MORE THAN PARKINSON'S"
What Happens With A New Diagnoses of Parkinson’s disease?
Hearing the words, “You have Parkinson’s disease,” is life changing. For some, a Parkinson’s diagnosis may mark the end of a long and frustrating search to explain a collection of different and seemingly disconnected symptoms. For others, a Parkinson’s diagnosis is a complete shock, filled with feelings of disbelief and despair. For everyone, a Parkinson’s diagnosis brings a new and unexpected journey.
Parkinson’s is not life-threatening, but it is progressive. This means that symptoms and effects of Parkinson’s will change and get worse over time. Parkinson’s is also very complex and can affect many parts of the body, ranging from how you move to how you feel to how you think and process. When you are first diagnosed, the sheer amount of information and the uniqueness of each person’s experience of Parkinson’s can be incredibly overwhelming.
Many people with Parkinson’s lead active and fulfilling lives. An important part of coping with Parkinson’s is understanding how it affects you and how to manage it. It may not always be easy to maintain a positive outlook, especially immediately after diagnosis, but continue to search for information and support.
How To Live Well With PD?
Since Parkinson’s affects everyone differently, the specific ways you choose to live well will be unique and will change over time. A positive attitude, staying engaged in your own health, consistently exercise and making a commitment to take action are steps everyone living with Parkinson’s can take to continue to live well.
Experiences of people living with Parkinson’s continues to show the incredible impacts simple lifestyle changes like stress reduction, getting enough sleep, a healthy diet rich in nutrients and exercise can have on not just your quality of life, but the actual experience of Parkinson’s symptoms. Research also suggests exercise may even help protect the areas of the brain affected by Parkinson’s from getting worse (a phenomenon known as neuroprotection), which may slow the progression of Parkinson’s.
"In fact, Parkinson's has made me a better person, a better husband, father and overall human being." -- Michael J. Fox
How Does Parkinson's Progress?
Parkinson's affects everyone differently. The symptoms someone might have and how quickly the condition develops will differ from one person to the next. For many people, the condition can take years to progress to a point where it has a real impact on daily life.
The symptoms most often associated with Parkinson's are tremor, rigidity (stiffness) and slowness of movement. Not everyone with Parkinson's experiences the same combination of symptoms. Also, how Parkinson’s affects someone can change from day to day, and even from hour to hour – symptoms that may be noticeable one day may not be a problem the next. Many of the symptoms can be treated or managed with medication and therapies.
Can You Die From Parkinson’s?
Most people's life expectancy won't change much because of Parkinson's. But, some of the more advanced symptoms can lead to increased disability and poor health, which can make someone more vulnerable to infection. The most important thing is to try to manage your condition as best as you can with the support of specialist healthcare professionals and your carepartners.
Is There A Cure For PD?
At the moment, there is no cure for Parkinson's. Across the globe, there is continuing research on Parkinson’s disease in search for a cure and therapies to treat symptoms. There have already been enormous strides in understanding the condition and the development of better treatments and therapies. But despite recent progress, there is still an ongoing search for a cure.
Is There Support for Younger People with Parkinson’s?
Parkinson's isn't just an older person's condition. But people often think it is, and that can be alienating for younger people who are diagnosed. Having Parkinson's as a younger person isn't going to be easy, therefore seek support and research your options on how to manage your condition.
What To Do After A PD Diagnoses?
If you've just been diagnosed with Parkinson's, you may find it helpful to think about questions to ask your doctor or nurse at your next appointment. Making a list of the questions you want to ask will help you feel more prepared.
Try to make your questions as concise as possible. You may want to give your general practitioner, specialist, or Parkinson’s nurse the list to read at the beginning of the appointment. If a healthcare professional says things you don’t understand, ask them to explain. It is much better to admit you don’t understand than to pretend you do, and then find you don’t know what you need to do when you get home.
Some questions you may want to ask include:
Remember that many healthcare appointments can be short. If you have several things you want to talk about, tell the receptionist when you call to make an appointment. They may be able to offer a double appointment – it's always worth asking.
Can You Drive With PD?
Most likely yes, in the early stages and if you take medicines that control your symptoms. Staying fit and active will help maintain the muscle strength you need to drive.
How do I know if I can drive safely?
Click Here for links to alternative local transportation options.
Can You Still Work With Parkinson's?
Many people with Parkinson's continue to work for a long time after diagnosis. However, you may need to make some adjustments.
Everyone with Parkinson's experiences it differently and the decisions you make will depend on your personal circumstances. The best thing you can do is get as much information as you can about your options regarding your employment and financial planning. If your treatment is carefully managed and you have plenty of support, it could be possible to continue working for as long as you want to.
Making adjustments to help you stay in work could include the following:
Sources for this page include:
Davis Phinney Foundation. Newly Diagnosed. Retrieved from https://www.davisphinneyfoundation.org/parkinsons-101/newly-diagnosed/
Parkinson's UK. How Does Parkinson's Progress?; Talking To Your GP, Specialist or Nurse about Parkinson's; and Work and Parkinson's. Retrieved from https://www.parkinsons.org.uk/
National Parkinson Foundation. Driving With PD. Retrieved from http://www.parkinson.org/understanding-parkinsons/living-well/activities-of-daily-living/driving-with-pd
Tips On Living Well With Parkinson's
The Davis Phinney Foundation recommends the following tips to take action after being diagnosed to continue to live well with Parkinson’s:
About the association
The Parkinson Association of Northern California (PANC) is an organization dedicated to enhancing the lives of people with Parkinson's their families, and care partners throughout our region.