What is it Like to Live with Parkinson’s Disease?

When an individual is first diagnosed with Parkinson’s disease it is much like receiving any chronic disease diagnosis because denial is the first stage of coping with the diagnosis. Many individuals accuse the doctor of making a mistake or that they are "cured of the symptoms" that brought them to the doctor in the first place. These are all common reactions and are denials that help the individual to get over the initial shock of being told they have a progressive and chronic disease.

The patient may get multiple medical opinions before accepting the diagnosis. They may refuse to tell family and friends about the doctor visits or the diagnosis. The denial stage may lead to a positive attitude of "fighting the progressiveness of the disease so that the disease will not control "me" but I will stay in control of my disease. Accepting, understanding and coping with Parkinson’s disease is a major transitional period as the individual goes from being a healthy adult to grasping the idea that they have a disease that traditionally gets progressively worse over time. Feelings of disbelief, anger, and bargaining with the doctor or with God are also all normal responses to receiving the diagnosis.

It is normal for the individual to want to "get better and return to a pre-illness state of being". The goal of treatment for those with Parkinson’s is to not get rid of the symptoms but to treat the symptoms in hopes of relieving them and allowing the individual to have the highest level of functionality that they can at the given time period. Patients crave to have their life be as normal as possible and to have privacy about the disease. When an individual has a chronic or progressive disease often times the disease becomes an identity to those around the person such as those who are co-workers, relatives or neighbors. Instead of Jimmy, he becomes the man down the street with Parkinson’s.

Some of the initial concerns that the individual grapples with after accepting the diagnosis may include how will my symptoms affect my ability to work my job? Will my disease change my flow of income? How will my spouse, partner, parent, son or daughter view me after they find out I have Parkinson’s disease? Will I become dependent on others? How quickly will the disease progress? Will I become totally disabled? What are my treatment options and is surgery in my future?

The individual living with Parkinson’s disease will need to learn to make lifestyle changes as they become necessary at work and at home. There are many devices that allow for continued enjoyment of many activities even as the disease advances. Your doctor and physical therapist can explain how you can make adaptations to your lifestyles and what if any mechanical devices can assist you to maintain your mobility and participation in the activities that you enjoy or are used to doing at work and at home. Typically there are no changes that are required early on in the disease and as the disease progresses you will be aided by your doctor, therapists and other medical staff in making adjustments and lifestyle changes as they are needed.

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