Share your story for Parkinson’s Awareness Week

Parkinson’s Awareness Week is fast approaching (18 – 24 April) and the media team need your help. We are still looking for people who are happy to share their stories with the media in the lead up to and during the week.

Over the last year we’ve been hearing from people with Parkinson’s that saying the words ‘I have Parkinson’s’ can be an incredibly difficult experience and can mean that people delay sharing their diagnosis with significant people in their lives. 

Have you delayed telling someone about your diagnosis? This could be friends, family or employers, and for any reason - because you felt ashamed, guilty or thought you would be stigmatised; or because you simply could not find the right words or did not want to accept the diagnosis. 

Or perhaps you’re a loved one, and you know it was a real struggle for someone to share their diagnosis with you.

Whatever your experience, if you would like to share your story, please get in touch with us by calling 0207 963 3945 or emailing [email protected]

My story as a poem I have in March 2015 had DBS surgery and just over one year on I am feeling so much better I was D/X in December 2006 at the age of 43 retired from my wonderful career as a Paramedic Practitioner June 2008 and will be 53 April 13th. I only need my driving licence back and I will be complete and independent again but that is a story in itself.

I am sure this will strike a chord with many if not all of the poem but some of it. Done at the lowest point in my life 2013 my motto

                            KEEP LAUGHING KEEP SMILIN​​

                        Me and my Parkinson's in my own words

                                          I wake in the morning
                                            And all seems well
                                            But within minutes
                                            My body is in hell

                                         I take my medication 
                                            And lay very still
                                         Trying to prevent him
                                              Doing as he will

                                                  As I lay still
                                       My twisted muscles relax
                                         The pain is unbearable
                                       For it is twisting my back

                                     I battle with him on my own
                                             For I have no one
                                           Except this disease
                                             I wish to disown

                                            The pain has gone
                                           I can get out of bed
                                             But he will return
                                           I know it in my head

                                           I  may look calm on
                                                The outside
                                          Yet I am trembling
                                               On the inside

                                              Every three hours
                                            I take my medication
                                            But I know he is there
                                           Waiting in anticipation

                                    My speech becomes slurred
                                          I cannot walk straight
                                          You see he was there
                                                Lying in wait

                                          My head and my torso
                                                Belong to him
                                          They move and sway
                                            At his every whim

                                       But he will never go away
                                 We have been together ten years
                                          I take my medication
                                        And try to hide my tears

                                         I carry on with my day
                              The simplest of tasks do tire me out
                                    When I cannot do what I want
                              Makes me want to scream and shout

                                               I feel all alone
                                          I cannot find a lover
                                        But they will not come
                                          While I have another

                                  He has robbed me of my family
                                               My job my wife
                                   But I am determined he will not
                                              Rob me of my life

                                                 I have a son
                                              But we are apart
                                             So near yet so far
                                            Always in my heart

                                                            Andrew Mallender I

1 Like