"Find Your Passion and Go For It."
"Just because you have PD doesn’t mean it is the end of the world... I have never looked back."
It’s ok to go slow. We are there for you.If you are a person who has been diagnosed with Parkinson disease, or if you care about someone who has been diagnosed, you undoubtedly have many questions and concerns. You may feel relieved, angry, or perhaps sad with episodes of fear. You may feel overwhelmed and find it difficult to function, make decisions and to know what your next steps are. We want you to know that it is perfectly natural to feel this way and this site is designed to provide you with the guidance and support you will need to help you manage and develop a plan of action.
Before you begin reading about Parkinson disease, there are a few things to keep in mind:
- Many people with Parkinson disease go on to live a normal life-span and enjoy many years of normal activities.
- Scientists around the world are working toward finding a cure. Many new developments, such as recent medication enhancements, make positive differences in the lives of people living with Parkinson disease.
- Everyone with Parkinson disease travels a different road. For example, not all people experience tremors. When you read the information in this website, remember that we have endeavoured to include most of the symptoms and reactions for general information. Your symptoms and your treatment will be unique to you.
As you read, keep a note pad handy and jot down questions for your doctor. Read parts of the site at a time, closing it down if you start to feel stressed or tired. The site has links that make it easy to flip from one section to another, including a glossary of terms and links to other useful sites. Some of the more important sections to review as a newly diagnosed person include:
The following information is an overview of some common reactions to the diagnosis of Parkinson's. It is intended as a starting point for learning, discussion and coping.
Adapting to Parkinson diseaseThe following section is adapted, in part, from "Living with Parkinson's" by Mariann Di Minno, RN, MA, and Michael J. Aminoff, MD, DSc, of the Parkinson's Disease Clinic and Research Center at the University of California, San Francisco. See www.parkinson.org for more information and the complete article.
DenialIt is not unusual for a person to reject the initial diagnosis of Parkinson disease.
Reactions may include:
- Questioning the diagnosis
- Consulting with many specialists, hoping that the diagnosis is incorrect
- Avoiding medical appointments and/or tests
- Refusing to tell anyone (including family and friends)
- Refusing medication when it has prescribed
While denial can stop someone from seeking appropriate treatment and support, it can also serve a positive function by helping people create the attitude of "I'm going to fight this and not let it control me". In the very early stages of diagnosis, denial is not necessarily a cause for concern.
Going from being a healthy individual to someone with a chronic, progressive disease is a major change. At first, a person may have more psychological and emotional symptoms than physical problems. There can be a sense of disbelief ( "it can't be me"), anger ( "why me?" ), and a desire to return to the pre-diagnosis days ( "I just want to get rid of this" ).
LabelsSome people want to avoid being labeled by the illness or identified by it, and therefore refuse to tell anyone about the diagnosis. They do not want others to know they have a chronic illness because they fear being labeled as a patient or as a disabled person. A newly diagnosed person may fear that suddenly they will be viewed differently by their family, children, friends, employer, or co-workers and that their privacy may be violated. Not all people experience this to the same degree. Age at onset and the point at which they are in their career may influence their reaction.
IdentityA chronic condition like Parkinson disease raises concerns about who we are (our sense of identity) and what we may face in the future.
Questions that frequently arise include:
- Will this interfere with work?
- Will this interfere with economic wellbeing?
- Will this interfere with my role as a partner, spouse, or parent?
- Will this interfere with other relationships?
- Will this change privacy, autonomy, independence?
- Will this change the customary way of life now enjoyed?
- How quickly will the disease progress?
- Will I become an invalid?
- How will the disease be managed?
- Can I adapt successfully to these changes?