Hi, Good Morning, thank you for listening to me tell my story.
In 2002, at the age of 45, I was in full stride as a wife, mother to two daughters, now 14 in high school, and another 20, in college. I was an active participant in our community, serving as a communicant in my Catholic church, soccer coach to a community all-girls soccer team, playing soccer myself two to three days
a week, and dedicated to my work as a speech language therapist to children with special needs.
The week of my 46th birthday, I was diagnosed with this thing called "Parkinson's Disease." I knew only that it was something usually old people are afflicted with, and I certainly didnt feel, act, or look old. But when I told my friends, they would cry and hold me and ask what it meant. I did not know what my future held, but I thought that my lifelong healthy, fit lifestyle would prevent its development. I was wrong, I was in denial
Now, nearly ten years later, I wonder how I got here. I am now divorced, on medical leave, awaiting approval of long term disability plan, living in a townhouse that is worth less than I paid for it, facing a future that is uncertain at best.
Parkinson's Disease is like a hateful, cowardly, and continuous thief in the night. It robbed me, like the despicable thief, of my job, my marriage (rocky as it was, I left before the disease became so apparent that I would not be able to find a new love) my athleticism, and my economic security. It robbed my daughters of a dependable, consistent mom, my ex husband of a wife, and my community as an active, vibrant citizen. But
mostly it robbed me of a secure future.
Now, I know we all are mortal, and face death each day. However, my disease walks next to me, making it difficult to keep moving, fighting my body and mind for control. Every day brings a new challenge of living, of moving through my days. I made a deliberate point to stay on good terms with my ex so that my precious children would impacted as little as possible. I promised them I would never leave, and despite some of my days being so difficult that death would be easier, I mean to keep that promise.
I lost my ability to communicate as eloquently and multi task as my job required, with my students. I could not keep up physically nor mentally with the youngest ones constant movement. In an unsupportive work environmnent, stress would exacerbate my motor and non motor symptoms to the point where I would hide in the school nurses office or in my own office. When I had "off" periods, which happened with more and more frequency, I walked with a stagger or a stoop, or would become dyskenetic to the point of colleagues asking about me.
I had DBS, a procedure that involves drilling two holes in ones brain to insert electronic leads, with battery packs and revisions of those in 2008 and 2009. I returned to work then had to leave again to replace a hip that had badly deteriorated in part due to the PD, then returned back to work in a three story school both times. Finally, with great sadness, I felt my cognitive and language changes (which few people besides those with Parkinson's really know about) made me more a liability than an asset at my job, and I left in December,2010. I have the very best physicians our health care system has, and yet, everything I do or take pharmaceutically are simply masks. PD progresses in its inexorable way, inconsistently, wickedly.
Now I face a very uncertain future. After years of paying into a government system of taxes, my retirement is imminent but impossible. Frankly, I cannot afford to retire. I have 11 years before I can tap into my retirement accounts, my compensation program, and my IRA. I spent a lifetime working with other people and their disabled children, but find myself disabled and frightened, uncertain about my future. Parkinsons stole my ability to practice my passion in helping other people to communicate.
I cannot emphasize enough how important it is that we continue to support NIH funding for a cure for Parkinson's. The Cures Acceleration Network, a small part of NIH, needs your support to continue funding so that we find a cure for this wicked disease. Basic biomedical research as well as applied research leading to greater understanding, diagnosis of, and therapies for Parkinsons Disease is imperative to find this cure. My brother, a scientist who runs a biomedical lab at Duke, relies on these funds to continue his important work. Science must drive science, not funding, because the cure could be based on one of those dead ends pursued by some scientist in a lab somewhere in the middle of the night. And the basic sciences as my brother so humanely puts it, "affect many diseases such as Alzheimers, Parkinsons, Huntington's, MS and even Type II Diabetes."
Thanks to PD and other neurogenic diseases, the toll on human lives and the economic price we pay for adults like me losing their ability to work is staggering. WE NEED TO FIND A CURE NOW. WE CANNOT WAIT TO PAY THE PRICE LATER.
I urge you to support the continuing funding of programs like NIH's Cures Acceleration Network. For some of us, it is a matter of life or continued loss of quality of life. (There are things worse than death.)CAN will hasten research from the lab to treatment (which can now take up to 15 years or more to accomplish, if at all)
Advocacy is my way of taking back control, of not being a victim to this awful disease called Parkinson's.
