Parkinson's disease: coming to terms with it
Most people, when they are told they have Parkinson's disease, know virtually nothing about it. They may never have heard of it, they may know only that it makes people shake, or perhaps have distant memories of an elderly, severely disabled relative.
Some people are devastated, and for others it is a relief to know that there is a name for what is wrong, but whatever our reaction, Parkinson's has come to stay and we need to deal with it.
Parkinson's is a nuisance disease, it slows things down, gets in the way of things we want to do, varies from day to day and never goes away. We will always need to remember to take medication and at times it will seem almost impossible to get it exactly right. It is frustrating and can be embarrassing and, for the family, there is a sense of helplessness and often the desire to take over.
The good news is that progression is slow and that Parkinson's does not shorten life expectancy. Good treatment of symptoms is now available and people are able to have a good quality of life, even with Parkinson's. Perhaps the best news is that researchers are predicting that there will be a cure for Parkinson's within the next 10 years.
Get information
Even if the GP or specialist carefully explains about Parkinson's when giving the diagnosis, most people take in virtually nothing of what is said. It is important, once the initial shock has subsided, to get accurate and up-to-date information to help adjust to the changes you have to face.
The best sources of information are your doctor or the local Parkinson's association. Libraries have information, but the Parkinson's scene is changing so quickly that it will probably be out of date.
Parkinson's associations have printed information, as well as people experienced in Parkinson's who have time to sit and talk about questions and anxieties.
If a follow-up visit to your specialist is planned after the initial diagnosis, it is a good idea to go prepared with a list of questions.
The old days of patients passively accepting that 'the doctor knows best' are gone. Management of Parkinson's is a partnership and often it is the patient who knows best; after all, you are the one living with it every day. In the new era of partnership, the doctor is the guide and the consultant, but decisions about management need to be made together. It is important that your GP and neurologist are prepared to listen and to share information. The time you are working together will be a long one, so you need to take care who you are working with on the way.
Grieve
Being diagnosed with a chronic condition is a bereavement, both for the person who has it and for their family. As one partner put it, 'our lives were turned upside down…in a few short months, our roles, which had always been secure and constant, had changed'.
There may be many losses, loss of work, loss of plans, or a change in roles. Many people are diagnosed around retirement and need to reassess their plans for the future, and people still at work may need to re-think their employment.
Grieving is a process and it takes time. It is normal to go through stages of denying that it is happening, getting angry and depressed, asking 'why me?' or 'why us?' and being afraid of the future. Be open about how you feel, talk with family and friends and people who know about Parkinson's, and allow yourself time to come to terms with what is happening.
Plan
The onset of Parkinson's starts a journey — a journey which no one asked for and which is moving into unknown territory. As with other journeys, maps and guides are needed. There are health professionals — those who are experienced with many aspects of this 'disease with a thousand faces'. There are also fellow travellers — those who may be a little further ahead and can give helpful clues on how to navigate. This is the time to form partnerships, partnerships which can determine the best management of the disorder and can help navigate the way ahead with dignity and enjoyment of life.
Often it takes something dramatic to make us stop and consider where we are going and what we want to do on the way. Being diagnosed with something like Parkinson's forces us to stop and think. Those who manage the best seem to be those who are determined to live life to the full and to make as few real concessions as possible. Perhaps things may take a little longer, or some days may be harder than others, but life can still be enjoyed. Perhaps instead of taking up calligraphy in retirement, you may need to try wood-turning or landscaping. Walking is one of the best exercises, so perhaps golf is a good idea, or perhaps consider getting a dog.
Remember, it is good to share the journey and, as Ingemar Bruto, the vice-president of the European Parkinson's Disease Association, said: 'There are straight days and bendy days and we are here to walk the bendy days together.'
This fact sheet is based on experiences of people living with Parkinson's, including speakers at the 1998 Barcelona EPDA conference.
Last Reviewed: 22 July 2002
