A diagnosis of Parkinson's disease can often result in mixed feelings, particularly for younger people (under 40 years of age), as it is less common. As with other chronic illnesses, there is often some relief that there is an explanation for troubling symptoms and ongoing ill health.
However, there is also a very real fear of the unknown and a sense of loss. Given that Parkinson's disease involves a gradual but inevitable deterioration in physical health and function, it is normal to worry and grieve about the future; mobility and independence; the ability to continue to work and produce an income; and the impact on family and social lives.
At this early stage, however, it is important to focus on getting accurate information about the disease and creating a network of professional and lay support.
A general practitioner (GP) is likely to be the first person involved and will remain a central participant in the management of health care for a person with Parkinson's (PWP). Developing a good relationship with a regular GP who can provide care on an ongoing basis will be extremely helpful. As well as providing information and direct care, a GP can also be an advocate and link to other community resources.
An early referral from a GP to a neurologist is also helpful, since not everyone, especially if symptoms are mild, will need to start on medication at the time of diagnosis. Allied health professionals, including physiotherapists, occupational therapists, speech therapists, dieticians and counsellors or social workers may also have a role in care and the GP can make referrals.
It is important to confide in and enlist the support of trusted family members and friends. Particularly at this early stage, a PWP may need someone to accompany them to medical appointments and help them take in all the information that is available. They can be reassuring and help to cope with fluctuating emotions.
Parkinson's NSW offers a range of services and support that can help PWPs and their families come to terms with diagnosis. Meeting and talking to other people who are going through or have been through similar experiences can be particularly useful. No-one has to deal with Parkinson's disease alone. We offer information sessions, an information line, counselling, access to local support groups, and a range of resources including a video for those people newly diagnosed. Contact us for further information.
Up to 10 per cent of people with Parkinson's disease are diagnosed before the age of 40 years. Parkinson's NSW recognises that this group of people has specific needs. To help younger people with Parkinson's better manage the disease, we have developed the Speeding Vibrations support group. We also have Parkinson's Link, a program that provides one-to-one linking of people with Parkinson's disease, and their carers, who are in similar situations.