Parkinson's disease: self help and support groups
Individual self-help
People with Parkinson's disease (PD) often feel more vulnerable, less valued and even a burden to others. PD is a condition that progressively reduces mobility and can even reduce a person's ability to communicate with others. While this may be true of other disorders, what sets people with PD apart is that this process can take place slowly over many years. There also may have been several years of increasing disability before diagnosis. It is important that people with PD have a positive attitude and control their own lives.
Many people suffer from a loss of self worth when they are affected by PD. There is no question; your body is not what it used to be, but the person inside that body is still there and intact. The disease does not stop feelings, emotions or thoughts. Other people will relate to the person they see and if this is a sick individual they will respond as such, but if they see a person controlling their own life, they will respond positively in return.
You may blame yourself for what is happening to you or may berate yourself for not having the energy to do the things you want to do. These attitudes will only undermine any progress you might make and hinder your mental outlook.
There are plenty of people with PD and most are willing to talk to you about how they have coped and how you can help yourself.
You may need to re-learn aspects of daily life that you previously took for granted.
Activities such as getting up out of bed, preparing meals or walking may become difficult to achieve on your own and you may need the help of a carer. Despite this, you need to take as much control as possible over your own life.
Other people may become involved in assisting you to become actively responsible for investigating and confronting the problems associated with the disease. Doctors and other health professionals need to work with you on this as part of a healthy therapeutic relationship.
Self-help groups
A self-help group is a gathering of people who share information, common experiences, situations and problems. Members offer each other emotional and practical support based on the unique perspective only available to those who have shared these experiences. They can give each other reassurance that their reactions are normal and that they are not alone. It is a group run by and for members.
The self-help model encourages an attitude of acceptance, an acceptance of the disease and of one's ability to continue with life.
Through the mutual support offered by self-help groups, a person can gain self esteem and courage to take on the disease and the difficulties that may lie ahead.
Getting out and socialising is fun! Being exposed to new ideas and new people is stimulating. A group helps members meet people who have interests in common or similar experiences to their own. It also provides a warm and supportive environment, a place where people can be themselves, release anxiety and tension, ask sensitive questions and tackle day-to-day problems. It allows people access to new ideas to help deal with difficulties in their daily lives.
Self-help groups have long been utilised by many in our society, as they can meet needs that would otherwise be unfulfilled. They are a means of non-threatening communication among individuals. This makes them low-stress or stress-free situations that provide mutual support, shared concern and the chance to socialise and help others in the same situation. Studies show that groups offer the individual the chance to contribute in a positive way that they may have previously thought lost. Joining a support group can alleviate the sick role often adopted by people with PD.
Parkinson's groups
PD support groups often involve the transfer of medical information and discussion of new research. The feeling that there is so much yet to learn is shared not only by the researchers, but also by the members themselves, who can often be as up-to-date as their doctors. Health professionals may be asked to provide information for the group or they may visit the group to provide assistance on a particular issue or to answer questions. New books, aids to daily living and new services may be discussed.
Another facet is that of control. People with PD know only too well the feeling of losing control over their body and feeling like helpless victims. As symptoms progress they face gradual deterioration of control. So if they join a group where a leader controls everything they feel they have no control over this part of their lives as well. To encourage people to assume control, the groups tend toward a supportive environment with shared leadership, where all members are responsible for their own participation and level of involvement.
Parkinson's associations have support groups for their members in each State. By contacting your State association you can become involved in a group near you and start on the road to self-help.
Attending a support group is an individual decision. It may be confronting, soon after diagnosis, to meet with other members. The best time to participate is when you feel the group could meet your need to support or be supported.
Carers' Groups
A group of carers with similar responsibilities and experiences can be very empowering. The support gained from sharing experiences — the ups and downs, highs and lows — with another can be extremely helpful. The knowledge that they are not alone, that someone else understands and is going through a similar time, can provide a network of support which is without precedent. Support groups are thoroughly worthwhile in every respect.
State associations
As well as running support groups, the State associations have similar aims and objectives, including family and individual counselling and support. They provide educational programmes and information such as newsletters, books, leaflets, audio and video tapes, which are available not only to people with PD, but to relatives, students and professionals.
Membership may be obtained by contacting your State office and asking for an application form. The associations rely on membership fees, bequests and donations.
The associations encourage members to become involved as volunteers in areas that are important and relevant to them and help others. For those who have given up work this may be an outlet to remain active and involved, in an encouraging and relevant atmosphere.
Parkinson's Australia is the central body for all Australia's Parkinson's associations, and is involved in issues and activities at a national level.
Last Reviewed: 23 July 2002
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