How am I going to deal with this?
A Parkinson’s diagnosis, although life-altering, is not a death sentence. Still, starting with the moment of diagnosis, you being to feel a sense of loss, mourning what you feel your future could have been: Your dreams, aspirations and events yet to come. At some point, though, you have to give up your fear of the future and begin to live for today.
No one should expect your attitude to be eternally optimistic, but sometimes facing a challenge such as this can be a real wake-up call: a chance to re-examine your priorities, and focus not on what you cannot do, but, instead, on what you can. It can be an opportunity to strengthen character and uncover qualities in yourself that you might otherwise never have recognised. Michael J. Fox has talked and written eloquently about this in speeches and books.
My emotions have been all over the map since I was diagnosed. Is there a “normal” amount of time it takes for people to recover emotionally from this news
Parkinson’s disease isn’t the end of the world. Many of us writing this wish we’d known when we were diagnosed how well we’d be doing all these years later, and we expect to have many more fulfilling years. There are so many ways you can live with the disease now — you just have to find what works for you. Never lose hope about the future. There is always something you can do.
I don’t want to be defined by a disease. How can I retain my sense of identity?
It takes time to learn that Parkinson’s disease does not define who you are, even though you may feel that way when first diagnosed. You are a person with Parkinson’s disease, but you are also a husband, wife, friend and so much more. You can still do many things, you will still be loved, and you will still make a contribution for a long time to come.
Parkinson’s disease is part of your life, but it doesn’t have to be your whole life. Try and focus on those activities that truly define you, that you enjoy, that increase your quality of life.
There is also still a great lack of awareness about Parkinson’s disease among the general public (although we have come a long way). Despite the fact that Parkinson’s disease can affect people of all ages, many are under the misconception that Parkinson’s is an “old person’s disease.” And despite the fact that Parkinson’s patients are dealing with so much more than tremor, the other big misconception is that Parkinson’s disease is “when you shake.” Remember that these are nothing more than misinformed perceptions — they don’t have any bearing on your actual experience.
Are there good reasons to be optimistic?
In a word: Yes. While Parkinson’s disease is a serious illness, and it will pose difficult problems along the way, a person diagnosed today has every reason to hope to benefit from major research advances. Numerous treatments to slow or reverse the progress of the disease are now in clinical trials or have shown promising results in the laboratory. Every year sees the advent of new research technologies and breakthroughs that continue to refine doctors’ ability to diagnose and effectively treat Parkinson’s disease.
Living with Parkinson’s disease is a long journey (that’s both the good news and the bad news!), one that changes gradually over time. While it is important to prepare for the uncertainty that Parkinson’s disease can bring to your life, it is objectively not the best use of energy to look too far into the future in terms of the therapeutic management of your disease. Even within the last 10 years, the quality of life for Parkinson’s patients has measurably improved. The prospects for the next 5 to 10 years are even better. It truly is possible to live well and thrive with Parkinson’s disease.
Support is available by calling Lifeline 131 114, Mensline 1300 789 978, Kids Helpline 1800 551 800. To read more about dealing with anxiety and depression visit BeyondBlue.
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