Nothing Can Stop Me
Diagnosed at 33
My name is Mauricio Sanchez, I’m a 39 year old male diagnosed with Parkinson’s disease and dystonia at the age of 33, but struggled with symptoms of the disease for two years before that.
Symptoms began gradually and one day I noticed that I was having trouble brushing my teeth with my right hand. It would cramp and get painful. I bought a sonic electronic tooth brush to see if it would be easier to brush, but had no success. As time went by, my symptoms got progressively worse. I started having trouble with my writing, it would get smaller as I wrote and even I couldn’t understand it.
I also noticed that my right hand would tremor and cramp when doing chores. Then I began having trouble walking. My right foot would drag with a limp. So I decided to go see my primary doctor and told her the problems I was having. She said that some people would have tremors when stressed and told me to drink a glass of wine every night and it would go away. I followed her advice for about three months, but my symptoms got worse. I noticed I was getting stiffer and was having trouble driving long distances. My right foot would freeze and cramp with pain. I also was having trouble getting out of my car. I would be out on the street feeling lost and unable to focus.
As time passed, my wife noticed that my attitude was changing. I would get very irritable with the kids. I didn’t understand what was happening to me. I would get muscle spasms on my right upper neck area. I went back to my primary doctor for my physical and told her all of the problems I was having. My drinking the glass of wine made my symptoms worse. She noticed that my tremor had gotten worse and she said that something was not right. She sent me to see a neurologist in San Pedro, Ca. He discovered that I displayed dystonia with Parkinson’s like symptoms. He then performed multiple tests to rule out various diseases. All of the tests were negative. One of the tests was a lumber puncture which on a good day was no fun. After the test I developed headaches due to a spinal fluid leak which required hydration and hospitalization. I needed two blood patches to stop the leak and then the headache went away. After going through all of that the specimen was lost so I was still without a diagnosis.
The neurologist insisted that I still showed signs of dystonia with Parkinson’s disease, but to have a better answer, he sent me to UCLA Medical Center dept of Neurology where they had the best neurologist for movement disorders. Meanwhile, as days went by, I was walking like a stiff board. I didn’t understand what was going on in my body, was it because I was working out too much? I’ve always exercised (e.g. run, lift weights) and ate healthy. I thought that the more active you are the better health you are in.
Finally, when I went to see Dr. Yvette Bordelon at UCLA , she stated that she agreed with the San Pedro neurologist, but she wanted to do an F-Dopa/PET scan. As I came to find out, this is not an easily attainable test. * In order to do the scan, an authorization from my medical insurance company was needed. So once again I was left in the dark. The authorization was submitted, of course it was denied because the other tests were negative. I filed an appeal with Blue Cross HMO and once again they denied the test, by this time I was getting ready to give up. Thank God my wife and I worked for the same employer, because we had the choice of having two different insurances an HMO and a PPO. Finally, when open enrollment came, I enrolled in the PPO. After that I had to wait for the medical insurance to start. I called Dr. Bordelon at UCLA and told her that I had changed medical insurance and to please schedule my PET scan because my symptoms were getting worse. I was having difficulties walking and had developed a limp on my right lower extremity, with cramping and it was affecting my job performance. I finally had the PET/scan which showed bilateral decrease of dopamine of the brain, more on the left side than the right side.
When Dr. Bordelon gave my wife and I the results, I felt like my life was ending. Dr Bordelon looked at me and she gave me a hug saying, sorry for the bad news. When my wife and I left the office, we drove to Torrance Memorial Medical Center and spoke to my Director and Supervisor. I told them that I was diagnosed with Parkinson’s disease and dystonia. They were speechless at first, but their response changed immediately to one of compassion and support. I am lucky to be working in a place that offers such support and caring to their employees. I then started the rounds of different medications and dosages. There are many side effects to PD meds. The worst side effect I encountered was obsessive gambling. I spent a lot of time going to the casinos, everywhere. I eventually used up all my credit cards and even borrowed from my retirement funds and was unable to pay my mortgage. I stopped that medication, but by then I ended up declaring bankruptcy. It was the worst of times.
Besides my wife, kids and in-laws, my co-workers and friends give me the strength on a daily basis to fight this disease. I go to the gym early every morning that I can and work out with weights, treadmill, etc. One of my good friends at the gym cuts me no slack to keep me motivated. We also have two dogs, Dash and Dollie who accompany me on walks every day, and my bird Ricky who loves to whistle for me. I look forward to the 3rd Wednesday of the month where my wife and I participate in a Young Parkinson’s support group at Cedars Sinai Medical Center. Here I feel like I am at home because all of us have so much in common. We share ideas and feelings.
I am running in my third charity run soon, the Parkinson’s Beach Brigade, with my own team, “The Dancing Feet with Mauricio”, to raise money “for the cure”. On February 11th I am going on a 3-day cruise “retreat” for Young Parkinsons’ patients with two of my buddies, Steve and Kevin, who also have PD. They are great to hang out with and we support each other in many ways. I am hoping that meeting new young people with PD on this cruise will “recharge my batteries” and offer me a new outlook.
I have up days and down days. I never know quite how my medications are going to affect me on a daily basis. I get some relief from acupuncture and massage at the office of Dr. Carol Hong in Torrance, Ca. I have had to become a left handed mouse user because I am never sure what my right hand is going to do at work or while I am eating. That can sure cause some embarrassing moments.
A new plan in my life is to consider the DBS implant surgery. I think I have a good attitude and with prayer and my support people, I can do it.
PS. I just returned from the 3 day cruise retreat, the people I met on the cruise inspired me to continue to stay in control with this disease. Some of the people I met exhibited symptoms which were more severe than mine, which provided me with a different outlook on life. It shifted my sometimes “woe is me” attitude to a more “I should be grateful” attitude for what I am still capable of doing. It also inspired me to take more of an interest in others and their needs. When the self centered model changes, so does your whole perspective. (Mauricio is pictured above (center) with friends Steve and Kevin on the Parkinson's Cruise/retreat at Sea in February 2011.)
*According to the American Parkinson Disease Association National Young Onset Center Medical Director, Michael Rezak, M.D., Ph.D., Movement Disorder Specialist at Central DuPage Hospital, Winfield, IL