By Larry Peabody
In September 2002, my life changed forever. I was 53 years old and enjoying one of those peak experience times in my life. I had just celebrated my daughter’s wedding and returned to my position as senior consultant, Organization Development at the Calgary Health Region, having been seconded to Health Canada as director of the International Health Bureau for the 2002 Kananaskis G8 Summit.
A week later, I plummeted into a dark valley when I heard the neurologist say, “Parkinson’s syndrome,” after hearing the symptoms I had described only moments earlier. That was the day I began a new journey, as a patient, in the same healthcare system I was employed in.
I soon discovered that being a patient was not that different from being an employee, in that there were times when I felt frustrated and powerless in my attempts to make sense of this large, complex and often confusing system of “disconnects”.
During a brief stay in hospital a few months after my diagnosis, I was seen by the on-call neurologist. Since then, he has provided me with excellent care.
Although the healthcare system can be frustrating to navigate, it is becoming more open to innovation, as old ways of thinking and practising give way to new opportunities to improve how we can work together.
In October 2008, I attended one of the Parkinson’s Society of Southern Alberta’s Health Partnership Dialogue events: http://www.parkinsons-society.org/Events2008_HealthCare.aspx. Over 100 people with Parkinson’s disease, family members, friends, and caregivers shared their stories and, with a strengthened collective voice, identified common service gaps and made recommendations for improvements.
They raised issues and offered tips that resonate with my personal experience:
Access to information and psychosocial support at the time of diagnosis
Learning that you have Parkinson’s disease is a frightening and devastating experience that often leaves you in a state of shock and disbelief. Empower yourself by gleaning information from your family physician, local Parkinson Society or Public Health services, the library and web sites. Being informed gave me a sense of control at a time when everything seemed to be out of control.
Taking charge of the medical intervention plan
Choose to not let fear, frustration or denial keep you from getting the best services available to you. Denial initially cushions bad news but, if maintained, it prevents us from using the help we need to manage our Parkinson’s effectively. Be your own advocate or bring a trusted person along to appointments to be an additional listener and to help address issues on your behalf. You don’t have to go it alone, but do go as an informed person.
Clarification of the follow-up plan
Ask questions: What do I need to do? Who do I need to talk with? Where can I go for information and support? When and how often will I see you or another doctor? Write down the questions that are pertinent to you. Remember, there are no wrong questions, when speaking with health care providers. It’s your body and your life!
Getting the real help that YOU need
Don’t be afraid to ask for the specific supports you need. Being diagnosed with Parkinson’s is a life crisis that threatens your emotional stability and may bring to the surface issues that impede your ability to cope with the ongoing challenges. Seek out professionals who can address your emotional, social and spiritual needs. Find out how to access services 24/7 in the event of a crisis, such as, medication reactions, sudden behavioral or cognitive changes that may create anxiety for you and your caregivers.
The time immediately following my diagnosis was one of the most stressful periods in my life. I felt powerless over this disease that threatened to take my life away, piece by piece. I needed hope for my future. I needed to trust my healthcare system and the people it employed. For me, my hope and trust emerges out of my personal faith and the assurance that my family and I will receive the right support and information at the right time, at the right place.
Over time, I have come to realize that my greatest source for hope and trust comes from within. It comes from knowing that I have a responsibility for the effective management of my treatment for me and my family. And that I have a responsibility to speak out, on behalf of those whose voice has been quieted or taken away by Parkinson’s disease leaving them powerless to communicate their needs or concerns about their healthcare experiences.