This is what Maureen has to say about #PDANDME:
Thank you for the opportunity to tell my story. I was diagnosed just before my 50th birthday in 2007.
My initial symptoms were atypical, with a very rapid onset of mental slowness and a feeling of unease that I literally just woke-up with one morning in July of 2006. I had been a teacher for 14 years and that September, as school started, it was clear to me that something was terribly wrong. Before the year was up l had been diagnosed with Parkinson's disease. I was on long-term disability before the end of the next school year.
This is where I started my journey of self-discovery through the lens of this puzzling disease. Being a researcher at heart, I set out to understand what was going on with my body with great enthusiasm. I was determined that I was going to figure this out and then be able to get on with my life! Here I am now, 12 years later, still searching for answers.
What I have learned is that there is no "one answer fits all" to anything about this disease. What you have to do to make any sense of what is going on with your body, is to focus on what does and doesn't work for you – and not to pin your hopes on what has worked for others.
I joke with my family that what I want written on my tombstone is: "SHE TRIED EVERYTHING!!!" I have certainly followed the path less travelled. After being put on too high of a starting dose of Sinemet, I quickly developed dyskinesia and had to consider other medication options. This is when I learned about a doctor of Chinese medicine named Janice Walton-Hadlock, who is passionate about treating Parkinson’s disease using theories of Traditional Chinese Medicine.
Although I was unable to successfully duplicate her results, I learned a very important lesson which was that we must all take responsibility for our own mental and physical conditions. I believe that this is the only point where we have any hope of recovery from our symptoms. Her knowledge is a constant inspiration to me as I continue on my path less traveled. Since then, I have tried numerous alternative therapies to manage my Parkinson’s disease.
Within the next 6 months I will hear about when my Deep Brain Stimulation (DBS) surgery will take place. I have very high hopes for great success with this procedure and am really looking forward to my turn. I feel confident that I have done everything I can to minimize the amount of Parkinson’s medications I take and their potential side effects over the past 12 years. I am ready for this next chapter in my life's story with Parkinson's.
Throughout this whole adventure I participate in a Parkinson's boxing group twice a week, get regular massage and acupuncture, and keep active with every aspect of my life. There are some things I don't have control over but I am determined to do what I can with what I am able to control.
From my personal experience with Parkinson's, my advice to any newly diagnosed person is to educate yourself on alternative treatments that are less destructive and have a longer effectiveness time without adding to your symptom list. Don't put all of your treatment options into the hands of your doctors. Don't be scared to try anything you feel might make a difference. You have one life and one shot at finding solutions to your life's problems, so go for it!
As part of our mandate to be the voice of British Columbians with Parkinson disease, Parkinson Society British Columbia is publishing the views and experiences of our community members. Any views or opinions presented are solely those of the contributors and do not necessarily represent those of the organization. Any changes in your treatment regime should be discussed with a qualified healthcare professional.