Newly Diagnosed with Parkinson's?
You are not alone
Help is at hand
If you have opened this page the chances are that either you, or someone close to you, has recently been told that they have Parkinson’s. The first thing to keep in mind is that you are not alone. We are all different and each of us has our own personal story to tell, but whether you are 18 or 80, you can be certain that someone else, someone just like you, has faced a very similar challenge.
Parkinson’s does not discriminate on the grounds of class, intelligence, or overall physical fitness. Many people think of Parkinson’s as a condition that affects older people. It is true that it is more common with increasing years, but a lot of people are diagnosed with Parkinson’s in their 40s and 50s. Some are diagnosed much younger.
These younger, more able people-with-Parkinson’s often go unnoticed. This is partly because, with good treatment, they look no different from anybody else. And partly because they are busy getting on with the rest of their lives.
For the majority of us Parkinson’s comes as an unexpected, uninvited, bolt out of the blue. At the moment it is unlikely that anybody will be able to tell you why one person (in this case you) has Parkinson’s, whilst most people do not. It follows that there is nothing or nobody to blame. It is not something that you brought upon yourself. Nobody deserves to get Parkinson’s, it most emphatically is not your fault, but it will from now on be an important part of your life. ]
Getting to know your condition and how it is likely to affect you is healthy and can be a vital part of coming to terms with the diagnosis. There is a huge amount of material published online and the Parkinson’s UK website http://www.parkinsons.org.uk is an excellent place to start. The information on this site is reliable, impartial and easy to follow. Here you will also find links to many other trustworthy sites.
Firstly it is possible to overdo the search for more information. The benefit of knowledge lies in giving you the ability to make informed choices and enjoy the rest of your life as best you can. No more than that. Secondly you need to be wary of unratified websites. Sadly some of these set out to exploit vulnerable people by promoting ‘alternative’ explanations and false promises of miracle cures. Miracles, by definition, happen rarely if at all, and certainly cannot be purchased online.
Coming to terms with a diagnosis of Parkinson’s is a personal thing. Everyone develops their own set of coping strategies that they find suits themselves best. There is no single ‘right way’ to go about it. For me: exercise, friendship and a sense of fun have been the key ingredients.
Who to talk to and how much to tell them, are essentially personal matters. There are no simple answers. Having Parkinson’s doesn’t change everything, but it does change a great deal and eventually other people will need to know something. For me, being open from the start turned out to be the best policy. It made things much easier, both for myself and others, when the symptoms began to become more noticeable.
In my experience most people took the news in their stride and offered to help in any way they could. On the other hand there are some who feel that admitting that they have Parkinson’s puts them at a disadvantage. They therefore try to keep their diagnosis a secret for as long as they can. This has to be a matter of personal choice, although it is probably always better to confide in close friends and family.
Outside of friends and family there are other sources of support available to you. First amongst these is your local Parkinson’s support group. You will find information about the activities of the Plymouth and District Parkinson’s group on the other pages of this website. When you have just been diagnosed you may, or may not, feel ready to engage with the local Parkinson’s community.
If you are relatively young the prospect of identifying yourself with a Parkinson’s group can be particularly daunting. If you do make contact then you are guaranteed a warm welcome. What’s more the members will understand what it feels like to suddenly become a person-with Parkinson’s. You will not be put under pressure, but you will be encouraged to join in as much, or as little, as you feel comfortable with.
A second avenue of support is provided by the Parkinson’s Nurse Specialists. These are an excellent source of 1:1 personalised advice and support covering all sorts of issues relating to Parkinson’s. For more information about our local Parkinson’s Nurse Specialists go to the contacts page link at the top of this page and look for Parkinson's Nurse. Each nurse covers specific area of Plymouth and the local area so try to choose the one covering your home area.
The real experts in dealing with the challenges of Parkinson’s are of course those people with the condition who have faced, or are facing, the same difficulties that you are facing now. Because the effects of Parkinson’s are so variable and the range of people affected so large it can be difficult to find people in a similar position to your own. In Plymouth we are planning to introduce a ‘buddy’ system which will offer to introduce newly diagnosed patients to people-with-Parkinson’s who share similar backgrounds and age at presentation.
If you would be interested in joining this scheme either as a newly-diagnosed-individual or as a person-with-Parkinson’s we would like to hear from you. Please use the 'contact us' link at the foot of the page.