“We can’t control that we have Parkinson’s, but we can control how we choose to live with it.” – Davis Phinney
A week after returning home from the Women & Parkinson’s Initiative conference, I am still on a high. The most important thing we learned is how to be pro-active about how we let Parkinson’s control our lives. We threw out the words “Perfect, Should and Normal” from our vocabularies. We learned about the psychological effects of Parkinson’s and the benefits of exercise. Most of the topics presented were familiar to me. But the one thing I had not heard of before is “Self-Efficacy”.
Self-Efficacy was presented by Diane Cook, who was also one of the 25 women with PD selected for the conference. Dr. Cook, who developed her own self-efficacy program based on the work of Dr. A Bandura, said that “Self-efficacy is the belief that one can achieve influence over the conditions that affect one’s life”. When first diagnosed with Parkinson’s (or any chronic disorder), we have many challenges. Psychological challenges can include shock, fear, anger,anxiety, depression and more. We have physical challenges, such as tremor, falling and slowness, all of which can be made worse by stress. We fear the stigma of PD when out in public and may withdraw and become isolated. As a result, we try to hide our disease.
All of this was true for me. My main symptom was a tremor. I was constantly trying to hide it by putting my hand in a pocket, holding onto my purse straps or doing anything else that would make it less obvious. I was afraid to tell people what was wrong. As a community leader who often spoke in public I found it difficult for me to speak unless I was behind a podium, and even then I was sure people could see my tremor. So I withdrew. And became depressed.
Self-efficacy seeks to break that cycle by teaching us to change our behavior and take a greater sense of control. We must become more pro-active about the healthcare we are receiving and develop a multi-faceted support network. That network may include your Neurologist or MDS, a support group, physical therapist, a psychologist, masseuse, other doctors and especially your friends and family. You need to find strength from within and increase your self-confidence with the help of your network. Set goals for yourself and follow through. Start with a series of small steps moving towards a positive outlook. You can learn by observing others whom you see as successful role models living with the disease. Seek positive reinforcement and encouragement from others. This can be feedback from your peers or support group. And listen to your body.
If you succeed, you can set higher goals. A series of successes will give you more confidence and positive reinforcement. which in turn, will make you better able to manage the continual challenges of a chronic, progressive disease.
It took me almost 6 years from my diagnosis to become more open about having PD. I took baby steps at first, encouraged by my MDS and my psychologist. I learned to become more pro-active with my healthcare. And sometime last year, it suddenly became OK to become more public with my diagnosis. My confidence grew and I found that other people were seeking me out for help with coping with Parkinson’s, which eventually led to writing this blog to help others learn how to manage their disease. Self-efficacy works. Try it!
My apologies to Dr. Cook if I got any of this wrong.