What has your life been like since your diagnosis?
I have spent the past 21 years applying all that I have learnt from researching creativity and working as a creativity consultant to my everyday life with Parkinson’s. This has included approaches to treatments, medications, options for surgery and communicating with family members, surgeons, carers and friends. Wanting to share my journey with others, I wrote a book together with my friend, writer Andra Kins, who lives in Australia. We met a few times in the US at the start of our writing process while I was still living there, and since then we’ve mainly communicated over Skype. My carers in the US and the UK have also helped me with work on the computer. This has been a long term, steadfast, loving and creative collaboration between two women over nine years.
How do you live well each day?
I always strive to have a positive and creative attitude in all that I need to do. I try not to succumb to the emotional lows that the progress of the disease and medications can induce at times. It is possible to change the daily experience of Parkinson’s by learning about and paying attention to multiple small details. Walking and doing stretches every single day makes a huge difference. Using a recumbent bike at the gym is good and, if possible, finding out and adhering to the best diet for your well-being is critical. This diet is not necessarily to be found in any books, but to be experimented with individually. For example, I have found that not eating sugar or sugar substitutes such as honey or maple syrup makes a huge difference to for me.
What do you wish you would have known when you were diagnosed that you know now about living with Parkinson’s?
Not long ago I completed writing a book about creativity and my life experiences with Parkinson’s. The name of the book is The Heartbeat of Creativity: The inspiring life journey of a creativity consultant diagnosed with Parkinson’s.
The book is divided into two parts. Part 1 opens the door to my life story where I trace the origins of my passionate interest in creativity and the development of my skills and experience working as a creativity consultant. My life took a very unexpected turn when I was diagnosed with Parkinson’s Disease at the age of 50 and in this part of the book I share how I steadfastly met and continue to meet the challenges of this debilitating disease. I have explored various treatments and have had DBS surgery and I write about all of this.
In Part 2 of the book, I describe a new way of understanding creativity. It can be used as a guidebook on how to live a creative life with examples offered to help people build their confidence and develop new skills. Case studies demonstrating successful collective creativity are also included to give a glimpse of the emerging possibility of how complex issues can be creatively resolved. If you’d like to learn how to use creativity to help you live well with Parkinson’s, I hope you’ll check it out.
Margaret Blackwell’s Philosophy
What do you wish everyone living with Parkinson’s knew about living well?
It helps to mix with people, regardless of their personal experience, who have a positive outlook. Never give up. Seeing the humorous side of things is important.
Being on the receiving and giving ends of love and kindness can make a big difference for the lives and experiences of people with Parkinson’s and their carers.
Singing is very helpful for well-being. I belong to a choir.
Pursue creative work that appeals to you.
Share Your Victory
Each month, we spotlight someone from our Parkinson’s community who embodies living well today – what we call Moments of Victory®.