What’s going on in Washington DC, and what does it mean for people with Parkinson’s?
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‘Faces of Parkinson’s: Global Reflections on PD’ is a new book of highly personal portraits, published by the World Parkinson Coalition®. These exclusive extracts show how people with Parkinson’s (PwPs) and carers have overcome the despair of diagnosis with love, hard work and sheer determination
Brian Reedy, PwP
How has Parkinson‘s changed my life? How has it not changed my life? For 20 years I was a passionate and fully engaged teacher while training my colleagues to implement technology in their classrooms. Finding myself unable to multi-task because of cognitive challenges, I had to retire two years ago.
Rather than lament the loss, I find myself counting my blessings. I meet amazing people with Parkinson’s. I have deepened my understanding of patience, and compassion for others. I learn to celebrate my successes no matter how challenging and time consuming they have become. My love and appreciation for my wife has grown tremendously.
As a caregiver, she gives so much of herself and is truly concerned about my wellbeing. Now she is battling cancer and I better understand the role of a caregiver. We have discovered together the more active we are, the healthier we become. My life has changed for the better and now I feel compelled to teach in the Parkinson’s community how to find the good in the face of very real adversity: A positive attitude is everything!
Lily Reedy, Carer
My PWP is my husband. His facial expressions have changed, but not the sparkle in his eyes. Daily pain and struggles are no longer alarming. They are part of the norm. We avoid crowds, concerts, loud restaurants, long drives and at times gatherings with family and friends. Concentrating on multiple conversations or busy environments quickly overwhelm him. Great comfort is found in the familiar and the freedom of his daily rhythm. We eat simpler, less processed foods. Digestion problems are a constant. Exercise is a focus, but establishing a routine is difficult.
We treat each other with more understanding and kindness. We are less stubborn and more flexible. This past year I was diagnosed with breast cancer. This flipped our roles and he became the caregiver. We learned a lot about what it feels like to be in the other person’s shoes. Our arguments are more respectful. We recognise each other’s unique needs. My emotions need to be heard, but he can listen best in small doses.
The progressive side of Parkinson’s disease requires a progressive understanding by a care partner. It’s an evolving experience. The road may be tough, but it gets smoother with love and respect.
Dawn May, PwP
I would have preferred not to have been given this diagnosis in 2012, but I am a relentless optimist. This trait has helped me navigate the past four and a half years without too much discouragement or despair. I have slowed down. This has given me time to reflect on my situation and position myself in relation to others. I have good days and bad days. This has made me more compassionate, less intolerant of others’ difficulties. I appear more fragile to my husband and three sons. They have become more protective of me, and more loving towards me.
I am not more fragile, yet, but the attention is nice. I am more aware of ageing and decline of others, as well as of my own. This may have happened anyway, but I had to confront it aged 59, still feeling strong and healthy with few visible symptoms. I feel more responsible to those around me, writing children’s books, talking in schools, setting up Nordic Walking classes for Parkinson’s, advocating through local groups and committees, volunteering left, right and centre, being a voice for people with Parkinson’s. Pre-Parkinson’s friendships have become more precious to me. I follow up on all mail and messages. I take nothing for granted. Yes, I have changed mightily.
Rod Sykes, PwP
My diagnosis four years ago accelerated my plans for retirement and pushed me to redefine myself for the better. It has been a gift in so many ways: motivating me to get a personal trainer to develop an exercise program; removing the stress associated with a professional career; returning to pastimes I had neglected, like gardening; and taking a siesta every day! I have noticed that truisms which others might regard as clichés now resonate deeply in my spirit. ‘One day at a time’, for instance.
To live fully in the possibilities of the day, to be ‘mindful’ in the moment, to entrust my future to God’s grace – for me these are no longer trite commonplaces, but existential challenges. I hope this has made me more sensitive to the people around me. So many people exhibit such strength of character as they cope with the vicissitudes of chronic illness. I have a renewed appreciation for their courage and determination and for the courage and love of those who support them. Day by day I am mindful of the gift of my spouse, Marilynn. Her fundamental commitment is the light by which I navigate my days.
Sara Riggare, PwP
My Parkinson’s doesn’t only affect my life, it affects my whole family: my husband, Per, and our 13-year-old daughter, Frida. She has never known me without it because even though I’ve known since my teens that I have a neurological disease, it wasn’t until Frida was six months old that I was actually diagnosed with Parkinson’s. It was a shock to find out at the age of 32 that the problems I was experiencing were caused by a disease so strongly associated with the elderly. Of course I have learnt since that about 5-10% of cases of Parkinson’s get it before the age of 40 but at the time I felt like I was alone in the world with my problems. This will probably sound very strange but I have chosen to make Parkinson’s my professional career.
A couple of years after I was diagnosed, I left my job as a chemical engineer to pursue a doctoral degree in health informatics at Karolinska Institute, Sweden. and my research is focused around ‘digital’ self-care. Parkinson’s keeps taking from me: I take more pills to keep my symptoms under control and walking is sometimes a challenge. But Parkinson’s also gives! Per, Frida and I have friends all over the world, friends we would never have met if not for Parkinson’s.
Order your copy of ‘Faces of Parkinson’s: Global Reflections on PD’ here
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