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Holding On: My Journey with Parkinson’s

For Parkinson's Awareness Week 2017 (10-16 April), we're publishing a series of blogs throughout the week which will provide unique insights into Parkinson's from a range of perspectives - from those living with Parkinson's to the researchers & clinicians dedicated to developing better treatments.

It is 20 years since I set out on this journey. There have been many peaks and troughs but also a few lush meadows and quiet lanes along the way. There are many on the same journey but each one has a unique experience. However for everyone the bottom line is – the condition has to be managed. To quote my consultant, “I can’t cure you, but I can help you manage it.”

The journey theme is taken up by PUK in their self-management course – an honest appraisal of where we are emotionally, highly recommended. 

"Over the years I have attended meetings, helped to form a support group and now rejoice in the name of 'Research Champion'"

My first attempt at management was to put my head in the sand, I was the original ostrich! “I don’t want to know,” was my cry. It was a couple of years after diagnosis that salvation came in the form of a radio phone-in programme. I dared myself to go on listening, and upon hearing a newly diagnosed lady in great distress I wanted so much to talk to her and offer reassurance; and so began my involvement with PUK and my interest in research. Over the years I have attended meetings, helped to form a support group (now North Durham branch) and now rejoice in the name of “Research Champion”.

I have had time to read and think and develop my own philosophy. Books are very precious to me and I turn to them for comfort and inspiration. I have written out a list of favourite quotes and re read it often.

I write and keep a journal, so my journey is well documented. I am enjoying our branch creative writing group as I like free writing. We are told to open a book find a clean page then write. This is to be done daily. I will add it on to my meditation time! There is plenty of room in our group so do join us on the second Friday of the month.

"You don’t need to be a scientist to be involved in research"

The theme for this year’s awareness week is “We Can’t Wait”. It is time for Parkinson’s to leave the stage as we redouble our efforts to find a cure. You don’t need to be a scientist to be involved in research, and research is not only drug trials. I have been involved in case studies, projects focusing on mood, facial expression and falls to name a few. You can be a subject for research, fundraise, fill in surveys or be a control - a vital role which carers friends and family can fill. I sit on two committees - the brain bank and DIFRID - dementia and falls. I have no scientific background but am building up a new vocabulary - words like mitachondria and hippocampus now have meaning. You can find out about research opportunities from PUK website, from branch meetings and regional newsletters. I am often approached directly, or an information sheet is attached to my notes when I have a clinic visit. It is very interesting and definitely worthwhile. I think that being able to do something with this condition is a great boost to self-esteem.

I am grateful to all who have walked with me and are willing to keep on going!

Helen Tumilty

Helen Tumilty


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