Debbie's Story

Debbie Age 54
Diagnosed  2004                                                                                                                                                          

My name is Debbie and I am 54. I am a single Mom with two boys; one is 19 and other is 26. I was diagnosed with Parkinson’s about a year ago. My mother, who is 85, has it also. She was diagnosed about 18 years ago, so when my left thumb began to shake a little about 4 years ago, I thought “uh oh, what is this?” Having gone to the doctor with her for years and watching her try to perform all those goofy tests of tapping your middle finger and thumb together, walking a straight line, standing on one foot, etc., I knew the answer to why my thumb was shaking more and more as the months passed. In my heart I knew that I had Parkinson’s but just didn’t want to hear a doctor actually say it to me. Of course, I cried when he said it out loud. I kept thinking maybe, just maybe I only had an essential tremor or something. One of my sisters said she knew it too just from observing me; the other one just cried when I told her the diagnosis. I was so angry. I see what a toll it has taken on my Mom over the last few years.

Once I got over the initial anger, then I got really scared. My Mom is in really bad shape. I didn’t want to end up like that. I got to the point where I was unable to go visit her, because it upset me too much… was I looking at my own future? My doctor told me that everyone’s Parkinson’s is different and that I shouldn’t think that the disease will progress at the same rate, have the same outcome, etc. At the time I was diagnosed, I was unemployed, having lost a wonderful job of 10 years with a major Pharmaceutical company. I was an Executive Assistant and was trying to find work. I kept thinking, “How will I find employment when my hand is either shaking or always cramped up” and I could no longer type with my left hand. I felt like I was being deceitful by even trying to get this type of a job and expecting good pay, when I no longer perform the way I used to. I did substitute teaching, which pays poorly and has no insurance. After the school year was over, I went on unemployment. I needed to work because I desperately need the insurance. I was receiving AHCCCS when the first doctor saw me, he put me on Amantidine. That worked minimally. At least it got me to the point where I could perform enough to land a job. Once on insurance, I changed physicians. I tried Mirapex…ugh! And then tried ReQuip…double, ugh! I am now taking Sinemet 25/100 CR and am happy to report I can type … with both hands! I am working for TGen, which stands for Translational Genomics Research Institute, in Phoenix, AZ. They do genetics research and have a neurogenomics division. I have told them that I will be their face of Parkinson’s if need be. I am up for any studies or tests and will gladly be their “guinea pig”. I am a firm believer that things happen for a reason. I was put at this institute to make a difference for those with Parkinson’s, to be a voice, to move research forward.

I went to the YOPD conference, having signed up at the last minute. It was such an empowering weekend. I was amazed at the number of young people who have this disease. Everyone’s story is so much the same, yet so different. Someone at the conference said, he was not going to refer to this as a disease, but rather called it the Parkinson’s Experience. I love that! I plan to keep positive, read all I can and pray for treatments that will slow down or cure the disease that I have come to think of as “the enemy”. My prayers are that stem cell research will move forward. Write your Congressman. I have also signed up with the Parkinson’s registry and I encourage everyone to do so.

 Be well, my Parkinson’s brothers and sisters. God Bless Michael J. Fox and Mohammad Ali, for without them this disease would not get the attention that it has. Keep the faith.

Read more YOPD stories                                                                                Debbie