Tuesday, 17 September 2013

"Help yourself to a bit of what is all around you..."

Lyrics in "Martha, my dear" by the Beatles

You become ill with Parkinson's disease only once so it's ok to make the plea, as you face the challenge of learning to live with the disease, "I've never had Parkinson's before, what do I know?" Allow yourself to get things wrong and change direction; above all else, allow yourself to learn! This is crucial in coming to terms with a diagnosis of Parkinson's.

Of course you are not alone in this endeavour; family, friends, fellow sufferers, doctors, Parkinson's nurses, charities such as Parkinson's UK, scientists etc are invaluable sources of advice, comfort and hope. It is important to remember that you are active in this process; those around you can only help you if you help yourself.

This is particularly important when dealing with the issue of cures; hope for a cure can make you vulnerable. Those with an incurable and chronic disease are predisposed to listen to talk of cures. However, such talk can give you false hope and lead you down the wrong path.

A clear and wise booklet ("I've got nothing to lose by trying it") has been published by Sense about Science to help us navigate the tricky issue of "cures":


Scientific knowledge is only science if it is supported by evidence; there is no place in science for blind trust. Therefore, anyone who claims to have found a cure will have a wealth of published evidence to show you. Such evidence is the basis of a scientist's reputation so they will be proud to share it.

This places the burden on you to assess the evidence. However, not everyone has been trained in science. This is where charities such as Parkinson's UK come in. They are in touch with the scientific community and can present the evidence in plain language to enable you to make an informed choice.

Parkinson's disease makes you feel vulnerable and alone. It is therefore crucial to empower sufferers with knowledge and hope; but it is equally disempowering to give false hope.

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