CHAMPs > Parkinson's CHAMP

September 2012 - Drowning PD

My story starts very unremarkably. I was a young wife and mother, raising our three children, ages 2, 8, and 11.  I was a stay at home mom, and piano teacher. I could do it all back then. I could cook dinner, teach a piano lesson, do the laundry, and nurse my baby all at the same time! Life was really good. We were a happy thriving family.

A little before 1990, something very dark started creeping into our lives. I didn’t know it at the time but that is when my PD symptoms started. They were very subtle, and insidious. In fact, other family members and friends noticed them way before I did.  

Then I started feeling very depressed. I had never had a depressing day in my life. I was always known for my smile and my happy outlook on life. At the same time I began having difficulty using my right hand to brush my teeth, wash my hair, and manipulate things. I felt paralyzed and yet I shook all over. I could barely play the piano anymore, and people would ask what was wrong with me because I had a strange expression on my face. I thought for sure I was having a nervous breakdown. So, being an intelligent person, I went to a psychiatrist.

The psychiatrist told me that I had post-partum depression, and wanted to put me on meds and talk about my childhood. I really didn’t think that was the problem.

My mom suggested that maybe something physical was causing these symptoms. I saw my regular doctor who referred me to a neurologist, who told me “I see a little Parkinson’s.” I totally rejected that and stuck with my “nervous breakdown” self-made diagnosis. After all, Parkinson’s is an “old person’s” disease. He sent me out of his office with a prescription for Sinemet and an MRI. He just wanted me to try the medicine to see if it would help.  

I immediately filled the prescription. In about 20 or 30 minutes, believe it or not, I felt normal. I felt like I hadn’t felt in months, maybe even a year or more. I was cured. All I had to do was take this medicine four times a day. I was so naïve, and still in denial. I was convinced I didn’t have PD, but for some reason this little blue pill worked for me. I went on like this for several months, but I started noticing fluctuations during the day.

Still in denial, I went for a second opinion to a movement disorder specialist. Perfect, I thought. He will know that I am just a nervous person who is having some difficulty and must know why this little blue pill works for nervous, depressed people. Unfortunately, that was not the scenario. After more cat scans and MRIs, he also determined that I had Parkinson’s. Not exactly what I wanted to hear.

The two big questions I asked were, “How did I get this?” and “What is my prognosis”? The neurologist replied - “We don’t know” and “You may be living with symptoms for 20 years as it slowly progresses, or you could be in a wheelchair in five years.” The latter prognosis was not acceptable to me. I was determined that I would learn to live with this disease with all I had within me and all the resources I could use. I did this for the sake of my family.  

As time went by, it became inevitable that I came out of the “closet.” I could no longer hide the symptoms from others. Thanks to great doctors, changing therapeutic techniques, walking, exercise, yoga, staying active, and having the constant support of  my family and friends who see me, not the disease, I actually feel better than I did twenty years ago. I don’t know how that is possible, other than perhaps a miracle and trusting in God to carry me through each day.

I am not saying that I don’t have really bad times when nothing works, and I am depressed, desperate, frozen, and shaky, but I always keep in mind that another day will come, and I will feel better. I also realize that I have a debilitating, degenerative neurological disease that is progressive. I still don‘t know what my future holds.  Yet, I can be grateful for today. In the last 15 years, I attended the graduations of all our children, danced at their weddings, and welcomed the birth of our first grandchild.

What first brought me to the Unity Walk in 2007 was my growing acceptance of the fact that I had Parkinson’s disease. It was a great time in Central Park that year. We had a huge team of over 25 people, and raised over $7,000.00.

Over the past five years our team “Drowning PD” has gotten much smaller in numbers, but larger in donations. To date “Drowning PD” has raised over $20,000.00.  

The Unity Walk gives my family and friends a chance to come together and show how much they care.  Participating in the Walk has given me a sense of purpose and the chance to be proactive in raising funds and awareness.

The year 2012 was a very special year because our first grandchild, Nick at seventeen months old, walked with us! What a huge blessing that was.

At the Unity Walk I marvel over the love and sense of community that surrounds all of us. Amongst the hard realities of PD, there is so much joy present on this day. It feels like a celebration of those who are living with PD. They happen to be some of the most wonderful people, who don’t deserve this horrible disease. Yet, all of us are so loved by the people around us.  You can see it in the faces of all the teams and their members, as well as the volunteers who donate their time and energy to this worthy cause.

The Unity Walk is a time to share stories and strategies, meet people, and gather new information. As long as I still have the ability to put one foot in front of the other, I will participate in the Unity Walk and continue to raise funds for Parkinson’s research. This is what the Unity Walk is all about.

As 2013 approaches, I look forward to getting my team together and hope to reach my new fund-raising goal of over $10,000.00 for 2013.

Ruth Drown
Team Captain, Drowning PD