CHAMPs > Parkinson's CHAMP

February 2017 - Drowning PD

I was diagnosed with Early Onset Parkinson’s disease at the age of 39 after two years of experiencing a range of symptoms. I was a wife, a piano teacher and mother to three young children, ages 10, 7 and almost 2.

The neurologist put me on Sinemet right away and it worked like a charm.  I felt so “normal”….no shaking, no rigidity, and I didn’t feel depressed, or anxious.  However, I was in complete denial. My neurologist referred me to a movement disorders specialist for a second opinion. To prepare for this consultation, I had to go off my meds. It didn’t take me long to feel depressed, frozen, shaky, rigid, and anxious.  The “Other” Ruth was back.   The specialist confirmed my diagnosis and explained that the little blue pills were working but they were masking my symptoms.

I remained in denial for another five years, while the symptoms were more benign.  I developed strategies for hiding them but eventually that didn’t work because I developed dyskinesia –a side effect of the drug, Sinemet. It was mild at first but it gradually grew worse and was difficult to hide.

When I asked about my neurologist about my prognosis, he said that the progression could go slowly for twenty years, or it could go very quickly and badly in five years.  The latter possibility caused extreme fear and ultimately brought out the fighting spirit in me. I was determined to stand up at the high school and college graduations of my three children. I was desperate to see the future, and prayed that I would be able to dance at their weddings, and if God blessed our family, welcome grandchildren into this world.

To make a long-involved story about my 27 year journey with Parkinson’s short, I will tell you that now I am 63 years old.  I attended the graduations from high school and college of my three children, I danced at two of their weddings, (the third isn’t married yet!), and my husband and I welcomed four wonderful grandchildren into our family in the last 6 years.  I still drive, work as a part- time ESL Instructor at a community college, and I am the best playmate for my grandkids.  We swim, play in the mud, sing, and dance. 

I have been a part of the Unity Walk since 2008.  I love this grassroots fundraiser because it is a wonderful time to share stories with others, collect information, and for me, to feel the comradery of these wonderful people who are living with Parkinson’s.  The Unity Walk is my favorite organization because 100% of funds go to research.  We need this desperately.  There are many people who are in dire straits because of what this disease has done to them, myself included.  It just isn’t right.  My involvement in the Unity Walk has given me a sense of purpose, as my team and I have raised over $61,000 in the 8 years that we have participated.  I hope to raise more than $15,000.00 in 2017.

I can’t explain the slow progression of my disease; neither can my doctors.  I believe it is a combination of exercise, yoga, working, trying to remain active, good doctors, and most importantly a good combination of meds.  I also have a deep faith in God and family, and they are my reasons for fighting. I pray that research can nail this thing….soon!

I have really good days, but more recently an increasing number of bad days. My symptoms are getting harder to control.  I see the progression of the disease and I will continue to fight the battle.  As long as I can put one foot in front of the other, I will be proactive and be a part of the Unity Walk. I am committed to raising as much money as I can so that I can make a difference in the lives of my fellow Parkinsonians and the Parkinson's community.

I want my story to give hope so that those who have been recently diagnosed with PD will see that there is life beyond that diagnosis. Maybe this disease is trying to define who I am, but I hope I will be remembered as a woman who had a deep faith, loved her family, tried to make a difference, and oh yes, she had Parkinson’s disease.

Ruth Drown
Team Captain, Drowning PD