Mary...Maine's Chapter President
Diagnosed at 40
I was diagnosed in November, 2006 at the age of 40. Although I am certain that I have had PD since I was 35, at the time I could not get my primary care provider to head down that path. I went to a movement disorder specialist whose reputation was outstanding. That was the day I was diagnosed and it was probably one of the best as well as the worst days of my life. My symptoms had a name as well as a treatment. As I sat in another doctor's office trying to listen and understand everything he was trying to tell me the only thing I remember were the words, "I'm sorry to tell you but you have Parkinson's disease". What do you do with that? I went to the appointment alone, and then drove back to work in silence with a smile on my face. I was not crazy, or a hypochondriac. My symptoms were real. I called my primary care physician to tell him the news and his response was "don't go putting the big PD on your shirt quite yet, I don't think he is right."
A few months after my diagnosis I began a clinical trial which in the beginning did not go so well, I lost 35lbs due to the side effects from the medication and my symptoms continued to progress. I was only able to stay in the study for 7 months due to the need to add more medications. My current cocktail consists of 10 medications, totaling 26 pills a day.
I work in the health care field and at the time of my diagnosis I was working for a company that installed and trained physicians on electronic medical records. I started training with a large multi-specialty practice in April, 2007 and in July 2007 they hired a movement disorder specialist from Baylor College of Medicine who studied under a top movement disorders specialist, Dr. Joseph Jankovic.
Do you believe that everything happens for a reason? I do. Wait until you hear what happens next. I started to train this new movement disorders specialist, and he and I just clicked. At that point I knew that I needed to switch docs. I had a consult with him and he agreed with the diagnosis and changed my meds considerably which changed my life. I started to feel more like the old me. In October of 2007 I was still working as a vendor in the same practice when they offered me a manager's job at one of their satellite offices. Around the same time the practice bought the fitness center next door and offered all of the employees a significantly discounted membership so I joined a gym and got myself in the best physical condition of my life. On the outside I was solid but on the inside I was falling apart, I needed to know others my age who were dealing with the same day to day issues that I was. My doctor, William Stamey, MD, had suggested that I find a support group; the only problem was the only young onset group was an hour away and they met early on Saturday mornings. I don't know about you, but my Saturday mornings are sacred. So when I couldn't find a group that fit my needs, I called the local Parkinson's Information & Referral center and became a Support Group Leader and created my own. Now I needed a place to have my meetings. Well here is where fate continues to work its magic, the owner of the practice where I work at allowed me to have our meetings at the gym at no charge once a month. Our first meeting was exactly one year after my diagnosis in November, 2007. We started small but now have grown to 17 members. I started to find myself becoming other patients' strength. They would call me their role model.
As I continued to go to the gym, I set goals for myself. I found that the exercising was the key to controlling my Parkinson's Disease. My balance had improved dramatically and I was tremor free for several hours after my workout. At this point I realized that we needed an exercise program specifically for patients with Parkinsons' Disease, a group of people that understood each other's limitations and would feel safe, and not feel like they were being stared at. So, I thoughtâ€”let's start an exercise class. And let's make it financially accessible for all; it would have to be at no charge. Again the owner gave me a slot on the gyms schedule, and I now teach an exercise class every Sunday to patients as well as their caregivers free of charge.
At this point Parkinson's disease had taken over my life, in a good way. There was no way you could stop me, what could I do next? I know, how about raising funds to send to APDA for research. So what did I do? I put together a team of 10 to walk in the Parkinson's Unity Walk in Central Park, and as of today we have raised almost $6500. At the walk they were giving out t-shirts that completely define my purpose in life. The shirt says, "I have Parkinson's BUT Parkinson's does not have me."
In the year and a half since my official diagnosis I have participated in a clinical trial, started a young onset PD Support Group, put a team together to walk in the Unity walk, started an exercise program for PD patients, run three road races with two more to go this year, met Lonnie Ali and Janet Reno and have become the new President of the Maine Chapter of the APDA. Everyone asks themselves at some point in their lives, "Why am I here?" I can answer in two parts; I was put on this earth to become a partner for an amazing husband and a mother to two wonderful children, Liz (18) and Andrew (20). And the second reason is to demystify what YOPD is and educate those who do not understand, especially in the young onset group. And I will continue to do as much as I can while I am able and hope that there will be a cure in my lifetime, but if there isn't I will have left a legacy for my family to be proud of and will have put my life to good use. I completely understand why Michael J. Fox calls PD a gift and I thank God for giving me this gift almost every day. There are days I would love to give it back, but I go through the paces and it all turns out alright.