This story is written on behalf of Joan Schneider, my wife, mother of two, grandmother of five. I was asked to write this story so that we could share our journey. A journey that started in happier times. Joan and I meet 17 years ago; both of us were recently divorced. We met at a mutual friend’s get together. I would say it was “friend at first sight.”
Early in our relationship, I meet Joan’s children, Steven and Nikki. Soon after, Nikki had a child of her own. The four of us moved together to Cleveland, OH, where I was offered a job. I was then offered a job in West Virginia. We moved into a beautiful 2-year-old log cabin on five acres. We had a magnificent view of the valley, but Joan missed her family.
I began noticing things about Joan that seemed odd. We were arguing more. She was restless, kind of out of place. She began to misplace things only to find them a few minutes or hours later. That wasn’t like Joan. She has master’s degree from Penn State University in Finance. I just thought it was the new home, without her kids or grand kids that were distracting her.
I also noticed one other thing — tremors. We both blamed it on nerves, but I could see that being away from family was starting to take its toll on her.
When my company decided to “go in a different direction,” Joan and I decided that it was time to move back home to Pennsylvania. Our house took 18 months to sell. In the meantime, her tremors worsened. Her family doctor told her it was stress induced. At the time we didn’t even know the term tremor, we called them “the shakes.”
We finally moved back home. Both employed, thinking we can make this work. Several days later, we both ended up losing our jobs. Joan found work through an agency fairly quickly. Remember, she’s the smart one.
During that time, Joan’s tremors worsened. They became noticeable. We started seeing our doctor more regularly, then a neurologist, who said she had essential tremors. Certainly, Parkinson’s was not mentioned. Both doctors thought medication would help.
Over the next couple of months, the tremors worsened to the point Joan began to complain about the pain in her muscles caused when she would try to stop them. She would cross her legs or sit on her hands to try to stop them. Joan was a very determined woman who always took charge of difficult situations. But even for her, this situation was getting to be too much.
I began a business in August of 2009. The decision made us cash-poor, but would provide us financial freedom. I could manage the business and Joan could do the financials.
One day Joan received a call from her sister in-law telling her about a surgery she saw on the news for essential tremors. We thought that it would be an easy surgery that would cure Joan’s tremors. Things were beginning to look up for us.
We learned that the procedure wasn’t so simple and that it was called deep brain stimulation (DBS) surgery. The procedure consists of three different surgeries, first surgery entailed drilling four screws into her head. The second, where leads (stimulator) were placed into her brain. Joan being the trooper she is took it in stride and never complained about a thing. The third ran the leads from her scalp to her chest. A regulator was then surgically placed in her chest. The regulator provides the current to the leads that would minimize, if not eliminate, the tremors all together.
Joan’s tremors were gone. There were some short-term memory issues. She would joke that she could not tell the difference between a debit and a credit. However, within a few months she was back up to speed, tremor-free and doing very well. She accepted a full-time job with a company. Life was pretty good the next five years. We spent most of our time with the four grandkids. We would do day trips, weekend trips and spent a couple of Thanksgiving weeks in the Poconos.
One seemingly normal weekend I realized something else was going on with Joan. Our friends, Tony and Lisa, were visiting for the weekend when Joan and Lisa got into an argument. Joan said some ugly things about Lisa that didn’t make sense and were un-characteristic of her. Our friends left and I couldn’t figure out what triggered all this.
Joan’s health started to deteriorate. She had three heart attacks and started to get urinary tract infections. They caused her confusion and even hospitalization. On her second hospitalization, Joan was experiencing confusion, not knowing where she was. She was lethargic, hostile and combative. We learned something that would, once again, change our lives forever. Joan had Lewy Body Dementia.
This was less than two years ago. In June of 2017, we made the impossibly decision to place Joan in a home. Her confusion became too great and she could no longer be cared for at home.
Now you may be asking what this all has to do with Parkinson.org/QuarterMidgets. Well I’ll tell you. Our granddaughter, Anna, is now 6 years old, going into her second year of quarter midget racing. When asked what graphics she wanted to put on her car she said she wanted something related to Parkinson’s. We reached out to the Parkinson’s Foundation and they are graciously allowing us to use their logo and make our car into a Parkinson’s Awareness car.
We race in the honor of Joan, and for the other 1 million Americans living with Parkinson’s disease. We also race for the friends and family who also live alongside this illness. Our hope is one day our race for the cure can be won.
See Anna’s car in action or support Gene's fundraising efforts at Parkinson.org/QuarterMidgets.