Learning to Live with Parkinson’s

Gerald shares his personal journey on blackcurrants and managing Parkinson’s disease.

In his words:

When I read reports of new research into the potentially positive effects of Blackadder juice [Blackadder varietal of blackcurrants grown in New Zealand] on cognitive functions affected by Parkinson’s disease, I was intrigued. I have Parkinson’s and over the last twenty years blackcurrant juice has been my hot or cold drink of choice (because tea and coffee both taste bitter to me and all alcoholic drinks taste like vinegar). I wondered whether my consistent and regular consumption of blackcurrant juice may have had some positive impacts on parts of my experience of Parkinson’s.

In the thought that others may find this interesting and the hope that it may encourage further research in this area of nutrition and health, here is my story.

I am 73 years of age and before the onset of Parkinson’s, I was healthy and fit, regularly cycling 70kms and enjoying heavy physical work, often up to ten hours a day. About seven years ago though, my health began deteriorating. I had increasing balance problems despite taking Stemital for vertigo as I had done for a long time. Increasing debilitating fatigue began to limit what I could do and I was falling asleep during conversations. Physically I became a mess but medical checks provided no answers to what was wrong.

When a specialist finally told me late in 2011 that I had Parkinson’s, I was so relieved that I felt like dancing round the room. Not knowing what was wrong with me had left me feeling powerless, but my response to this diagnosis was to immediately to start thinking about how I could work on regaining control of my life – hopefully with my usual energy and optimism.

I have been told that my response was unusual. Many Parkinsonians are shattered by their diagnosis and feel embarrassed that they are conspicuously different – one person called its effects on him “an obscenity”. It is not uncommon for Parkinsonians to not tell friends and family for many months. Most of us also feel disempowered by the inevitable progression of our illness – there is no cure. So I feel very lucky that my response has been to come out fighting. I have taught myself to multitask so I can constantly watch and work on eliminating those actions which mark me as different. Indeed this is something I will do the rest of my life.

Despite now being able to pass a lot of the time as ‘normal’ (as a result of my medication working) I do feel different. I live in a world in which my physical actions can no longer be trusted. For example, in the early stages I found myself waiting to see if my hands would do what I wanted them to do and often I waited for ages for them to cooperate. My Specialist, who likes to try the unusual, told me of a Scandinavian study where Parkinsonians with limited finger control took two ‘No Doz’ caffeine tablets a day with marked improvement for some of them. Don’t ask me how it works but by taking this advice my hands become as obedient as a normal person’s. There is a deeply felt joy when a physical movement is recovered. I know this probably won’t last, but I will enjoy it while it does. Maybe Blackadder blackcurrant juice will do something similar for mental activities?

I remain determined not to be seduced by the ironical comfort of accepting the physical and mental limits of what I describe as the cloying embrace of Parkinson’s: that can so easily trap into apathy. Parkinson’s is a world I would have been thrilled not to enter, but enter I have and this different world is for me full of love and beauty, warmth and an appreciation of life which more than compensates for the inevitable decline into a wheelchair.

I hope that funding becomes available for further research into how blackcurrant products may assist the management of Parkinson’s.

Read more on new Blackadder Research [Plant & Food Research]