Prior to DBS Surgery

Cheryl

Texas

Diagnosed with Essential Tremor in 1995

Diagnosed with PD, 1996

Bilateral Deep Brain Stimulation,
March 2003

With Husband, Jim, and sons, James and Patrick
Christmas 2003

June 2003


Howdy, all! I am Cheryl, 51 years old, the mother of James and Patrick (23 and 19 years old) and wife of Jim for 27 years (high school sweethearts for seven years prior to that). I am a first grade teacher in my 23rd year of teaching public school in Arlington, Texas.

My diagnosis came following an earlier dx of Essential Tremor (April 1995) in late 1996. I don't remember my neurologist ever coming right out and saying point blank, "you have Parkinson's Disease" but I do remember seeing the code for PD circled on the receipt that I brought home with me from the doctor's appt. The earliest symptom I had was a slight tremor in my right hand (that another friend pointed out to me and then I asked my GP about it). The sinemet worked so well for me that it changed and confirmed the diagnosis. I continued working, bowling in a league, and being very active at my church as the pianist/accompanist for several choirs and soloists. I also rang handbells solo. Eventually, though, much of that became difficult and I gradually cut back on my responsibilities at the church, we quit bowling, and I dropped out of the choirs - both singing and ringing.

Then, the year 2002 came. My father was getting much worse as an Alzheimer's patient. My mother's health and well being was suffering from caring for my dad. My older son got engaged, lost his job, lost his fiancée, lost his place to live at the same time that my younger son graduated from high school and prepared to attend college. My dad died, my mother got better, and I got worse. I started the school year in 2002-2003 with a disclaimer: I didn't know how long I would be able to continue to work. My colleagues did not want me to quit (none of them wanted to take over for me as team leader!), and my principal told me that what ever I needed--to let her know...she wanted me to stay as long as I could. With the help of many, I did remain at work...the days were difficult--some more than others. It became more and more difficult for me to get around. I started the year using a walking stick (which by the way was great!) and by January I was often in a wheelchair that I kept in my classroom at school, during the daytime.

Needless to say, my neurologist and I decided to take the next step and seek out a Movement Disorder Specialist. Thanks to a mix-up with the insurance company I ended up with an appointment with Dr. Malcolm Stewart in Dallas. Following our consultation and check-up with him in December, 2002, I went through a battery of tests to determine if I was a good candidate for Deep Brain Stimulation. Thankfully, I was, so in March of 2003, I went to Presbyterian Hospital in Dallas, Texas, where Dr. J. Michael Desaloms and his team performed the surgery successfully. I now have two brain stimulators working inside of me! And I am a new person compared to what I was last year. I went back to teaching in May of last year (six weeks recovery time) and have been going full blast since then....This year I have 22 first graders in my class. I am also taking a college class one day a week and I have been able to play the piano again as I did before--even playing the offertory in church on two separate Sundays and playing during a luncheon at church.

Since my surgery I have been back to the lab where the testing was done prior to the decision to have the surgery. There I was put through the battery of tests again (this time 4 times --once no meds but stimulators turned on, then no meds, no stimulators, then meds (after waiting for them to kick in) and no stimulators, and then finally meds and stimulators. The research will be useful I'm sure to help further the DBS treatment. But even more interesting to me the first time I went back was the big surprise that came after the first set of tests. As the doctor went to check the stimulator settings she had a funny look on her face. She tried again to check the setting and then looked at me and said, " Your stimulators are not turned on!" No wonder I had not been doing as well as I thought I should! Five weeks before that I had experienced a time when I couldn't stand alone without big time tremor. Because it was at the funeral of a mother of a student that I had last year I had thought that it was just the stress of the funeral. Although I also began having more and more symptoms from the year before surgery I continued to think that it was due to the stress of going back to work as well as taking a college level class and having 22 children in my class (unlike last year's small class of 16.) We have no idea how or when I got turned off but we certainly were happy to find that out and be turned back on again. Of course, we immediately drove over to the MDS' office and picked up our very own Access Review Therapy Controller. It looks a lot like a garage door opener and can be used to check to see if each stimulator is turned on or off, as well as being used to turn them off or on. I've only found myself turned off once since that time…I used the remote device to turn myself on and the tremors that had been occurring immediately stopped. Jim had a great time sharing that story with everyone: He jokingly told his friends that he could turn his wife on any time he wanted!

Today I told someone that I knew that the disease was continuing to progress---I just hope that I can be at least 80 or so before the DBS treatment wears off and then maybe by that time there will be a cure for this debilitating and even sometimes painful disease that robs us of our movements.

One thing I've enjoyed during this time has been reading and communicating with other PWPs through the Internet. I have benefited from reading what others write about their experiences and I have also benefited from sharing my own. Those of us who are "young" often are unable to attend "daytime support groups" because we are still working if we're lucky. The Internet has provided me with much support from those who are in the same boat. I'm grateful for that and hope I can do the same for others!


Before DBS, Tooth Fairies

After DBS, Nannie's 100th Birthday