Janet Auty-Carlisle grew up playing with toys and dolls, just like any other girl. She went to school, got married and started a family. Everything seemed to be going well when the unthinkable happened. Janet was diagnosed with Parkinson’s disease and, with the support of a devoted husband, began to deal with doctors and medications and hardship.
Although Janet was still able to work at first, things became harder for her as time went on. And as the medications began to take their toll, she was forced to resign her position. Before the diagnosis Janet ran a company that specialized in corporate relocations, aiding people in their own transitions by helping them get settled into new schools and tapping into local services as they adapted to their new homes.
Janet eventually decided to use the skills she’d acquired in her relocation firm to help people transition when learning to live with a chronic disease. She formed a local support group which met once a month, organized the first annual SuperWalk for Parkinsons' and raised $45000 the first year. She began an education campaign at the local school board and traveled throughout her community raising public awareness. In addition Janet developed a program called “Bridging the Borders”, a weekend-long awareness conference for people with Parkinson's and their care partners, and an empowering program for fund raising called ICAN. (www.icanforpd.ca).
After six years of taking medication and being exposed to so many people with Parkinson's, Janet noticed that the disease was not progressing. Questioning her specialist Janet was always told "You are in denial. You do have Parkinson's. Deal with it." Not satisfied with this answer Janet met a neurologist at one of her conferences who agreed to provide her with a second opinion. Shockingly, this doctor told her that her symptoms were possibly due to stress and a virus she’d had at the time of the original diagnosis and not Parkinson’s disease at all!
It took Janet a full year to wean herself off the powerful drugs she had been taking for the wrong disease. The medications had some serious side effects, but she overcame all of this. At 48 years of age, she felt like she’d been given a new life. Janet now lives by the motto: “The only constant in life is change.” Janet discovered that her real strength and passion was for coaching, writing and speaking. After coming to terms with her illness, she realized that what she wanted most out of life was to help people learn to live a life of joy and passion. Janet now coaches others as a Lifestyle health and wellness coach. Having experienced similar life situations as her clients provides Janet with the ability to relate to her clients on a more intimate level and place of profound understanding.
What lessons has Janet learned from her experiences? 1. You are responsible for your own health care. It's your body nobody else's. If you aren't sure about something or want a second opinion then get it. Your medical team should support such a decision. If they don't support you go find a new doctor or medical practitioner. 2. ask lots of questions. Be educated about your illness. Receiving a diagnosis of a future filled with chronic care, chronic illness and no chance for recovery is life altering no doubt, but it is not life ending. 3. Take the time to do what you love, take the time to surround yourself with people you love and create a supportive network. If your medical team is not part of this network go find another one. Never be afraid to query your doctor and challenge them on therapies if you feel uncertain.4. Always, always, always ask for information if you are not sure what you are being told. Finally, if your doctor is rushed, and who isn't, insist they spend more time with you if you have questions. I often left my doctor's office feeling as if I had been brushed off for more important cases and felt very frustrated. Don't forget, like you, your doctor is also a human being with feelings and issues and if you have a chronic illness you will be in a relationship together for a long time. Work together to create a comfortable visit each and every time you go to the office.
