What you need to know about being diagnosed with Parkinson’s
Being given a diagnosis of Parkinson’s can result in either a sense of shock or relief. For many the time before receiving the diagnosis was a confusing period of vague symptoms which were not previously connected or the symptoms may have been so typical that a self-diagnosis had been established. Being newly diagnosed also raises many questions and queries about the future.
As the journey begins it is essential that you and your family are well informed and equipped to work closely with the treating medical specialist and the rest of the health team. A recommended first step is to contact a health professional who is an expert in the field of Parkinson’s – for many that person might be the neurologist or a Parkinson’s Nurse Specialist available through Parkinson’s WA Inc. Both of these individuals will help you in the days and years ahead, they often work together to form a seamless and united team to explain and answer any questions.
A common response to the suggestion of seeing a nurse is “I am not bad enough to need a nurse.” The Parkinson’s Nurse Specialist is not there to provide hands on nursing care but instead acts as an educator and support person. The Parkinson’s Nurse Specialist will also know the best and most appropriate services for your individual circumstances. That is one of the most challenging aspects of Parkinson’s – everyone will have a unique story and presentation. The Parkinson’s Nurse Specialist will be the best-equipped person to assess what will benefit you.
Contact with the Parkinson’s Nurse Specialist Service can be made through any of your health providers or a phone call from yourself is sufficient. A firm medical diagnosis of Parkinson’s or Atypical Parkinson’s is the only criteria for referral.
Rest assured that Parkinson’s is usually a long-term condition which is not regarded as life threatening. For that very reason, it is essential that you adopt some healthy life choices to help you prepare for life with Parkinson’s. The first step is to realise the importance of exercise – this is the only intervention known to address the progression of the condition. Your motto should be to “use it or lose it.” Any form of exercise is valuable and in addition to simple exercise such as walking etc. there are many Parkinson’s programs available through Parkinson’s clinics or private practitioners accredited in programs such as PD Warrior® or LSVT BIG®.
The Michael J Fox Foundation also offer a free guide for those newly diagnosed. Titled If I Knew Then What I Know Now, the guide can be downloaded from their website by clicking here: Free Resource Guide
Parkinson’s WA also runs regular seminars with useful advice and information for people diagnosed with Parkinson’s. There are also 20 Support Groups throughout WA, for more details and for a full list visit the Support Groups page. You can also become a member of Parkinson’s WA for $36 per year, for this you will have full access to our library of useful Parkinson’s related information, receive our newsletter that contains Parkinson’s related updates and also discounts to our seminars. For more details about membership visit the dedicated page.