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Your Symptoms Are Unique To You

Article written by Jackie Hunt Christensen.

Since that life-altering moment you received your diagnosis, you probably have learned about the symptoms of Parkinson’s disease and your treatment options. But what you should also know is that your Parkinson’s and how you deal with it are as unique as you are.  

For some people embracing new activities that refocus their attention away from troubling symptoms and onto things that are intrinsically satisfying can help. The key, she says, is to find ways to bring joy and happiness into your life every day.

How to cope with the symptoms of Parkinson’s disease

The only predictable thing about this disease is that it is unpredictable.
— Richard, diagnosed at 36

Tremors are the first sign noted in about half of all people with Parkinson’s disease. But maybe, like 15 percent of people with the illness, you have never experienced this symptom. That is because Parkinson’s disease affects everyone somewhat differently.

As you will discover, your symptoms will continue to change, often from day to day, and throughout the course of your life. But even though there is no cure for Parkinson’s, the sooner you can take steps to manage symptoms when they arise, the better chance you will have at maintaining a good quality of life.
That is why the first step in coping with the changes that accompany a Parkinson’s diagnosis is to simply increase awareness, to notice new symptoms as well as how your body responds to certain activities, stresses and therapies. A helpful way to do this is by logging your symptom patterns in a daily journal.  It is just a matter of jotting down small changes you notice in your physical and emotional health each day. That way you can discuss these issues promptly with your doctor and receive treatment.

Ways you might deal with the changes that Parkinson’s brings

Do what you can while you can

I have had Parkinson’s disease for nearly 20 years. My wife is a teacher, so we travel every summer when she is not working. Since my diagnosis, I have been to China, Nepal, Prague, Paris and many other places. The Parkinson’s comes along, too, so our trips require more planning than they used to and we involve my care team. We factor in daily naps and take it slow. My balance isn’t as good as it used to be and too much walking wears me out so we bring a collapsible wheelchair along or make sure one is available. I also use a cane. I don’t know how many more places we will get to visit as my disease continues to progress, but we have made some wonderful memories that we wouldn’t have if we had let my Parkinson’s dictate every aspect of our lives.
— Nicholas, diagnosed at 52, still traveling at 72

Many people with Parkinson’s disease are not allowing the condition to take over their lives. Despite the everyday setbacks they face, they are still creating fulfilling lives for themselves by redirecting their attention to people and activities that bring them joy. You can do the same. Try building a few hobbies into your routine that will give you a break from dwelling on the disease. Find some activities that help you forget about Parkinson’s for a while. That may be painting, writing, gardening, or reading to your grandchildren.  

Ask for help

Whether you were diagnosed early in the disease, or have had symptoms for quite some time, there will come a day when you can no longer do something. That may involve carrying a cup of coffee or being able to write down a phone number while you talk on the telephone.

Although asking for help with activities of daily living (ADLs) can be very difficult, particularly if you have never been one to rely on others, you will need to learn how to request and accept assistance as your disease progresses. Drawing from the care and interactions of close friends and family will help you cope better with the illness.

Accept what you can no longer do

Over time, it may seem as though you are losing your independence because you can no longer do all the things you once did. As these losses occur, you will probably go through the five stages of grief identified by Dr. Elisabeth Kübler-Ross. They include denial, anger, bargaining, depression and acceptance. Being aware of the issue or loss to which you are reacting will help you to move from one stage to another more easily.

No matter what your symptoms are, motor or non-motor symptoms, don’t let Parkinson’s beat you!

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