Gretchen Garie:  

just gotten involved with a Parkinson's group in Florida, and was involved with an education advocacy group. I was asked by the Parkinson's group and the educational group to come to Florida to do some consultations with them. Michael was the first person I had met with YOPD. It was also around the same time that the idea of planning a gathering of our PD group members and their families began to take shape. As I started helping others find hope, support, and faith, I realized God was showing me that there was a reason for having this disease, and the way I handled things was going to affect the lives of others. "Of all the forces that make for a better world, none is so indispensable, none so powerful, as hope. Without hope people are only half alive. With hope they dream and think and work.¿ The more people we came in contact with, the more we wanted to reach out. The plans to have a gathering of our online support group members & their families, began to evolve and with 2 other people with PD, we decided to dream big and create an annual conference for anyone affected by Young Onset PD. During the planning of this conference, we realized that we wanted to expand our vision to more than just an online support group. We wanted to create a network of advocates throughout the country that would reach out to others in their area that needed to get plugged into the PD community. We wanted to make sure that others would never have to feel the lonliness, isolation, and confusion that we had dealt with. We also wanted to provide programs that would help educate others about Parkinson's disease. create awareness of what issues people with young onset PD must face. We developed presentations that are still continuing to target "First Responders". EMT, Police, Fire, Hospital staff, including Emergency Room doctors and nurses. Movers & Shakers~ A National YOPD Outreach & Advocacy Organization was born. Our conference and vision drew the attention of the National Parkinson Foundation (NPF) who offered to help us with the Conference, and while we had been prepared to do it all on our own, we accepted the help. 6 years ago, in June, 2003, the first Young Onset Parkinson's Conference was held in Atlanta, GA. It is now an annual event, that is put on in a different location each year. Michael and I continue to participate in the conference, and have watched our dreamchild grow and evolve, hosting over 400 attendees, at this years conference, without losing sight of important elements we wanted to maintain. It was also during 2003 that LuLaura and I moved down to Naples, Florida. While she was not happy at first, and had to process a lot in a short amount of time, She came around. We brought her horse, 2 dogs, and 4 cats with us. She played softball, made friends, rode her horse, and had new experiences. She finally admitted she was glad we moved here. Somewhere between children, running a national organization, and other life activities, Michael and I fell in love, and got married. We have a blended family of 5 kids. Four girls, ages 23, 19, 18, 17, & one boy, 15. At any given time we have any number of them living with us. We have 2 grand children, age 4 and 5 weeks old. As Movers & Shakers grew so did our contacts. We became involved with the Parkinson Action Network, the advocating organization for the PD community. We are PAN FL. state coordinators, and travel to the state capitol and Washington DC, to meet with our legislators on a regular basis. We also travel around the country doing public speaking engagements, help set up support groups, and attend and participate in Parkinson's conferences, research, and create educational programs for helping others understand how to help someone with PD. Both Michael and I have grown and remain strong in our faith. I came to realize that God DID answer my prayer... He gave me a new life! I also see that my passion to teach was not taken away, only changed direction. We are very active in our church. I have been singing in the choir for 5 years now, and have been in our chuch's massive Living Christmas Tree performances for 4 years. Every summer we teach Bible School! It reminds me for one week, why I not able to teach full time! HA HA In February 2008, we began a year long journey of seeing Michael through Deep Brain Stimulation Surgery. Currently, when a person with Parkinson's Disease, progresses to a point when the medications are not working well, the amount of medicine needed to reduce the effects of the PD causes side effects that are sometimes worse than the symptoms, and there is a significant reduction in quality of life, they may be evaluated by a team of doctors to see if they would benefit from having the surgery. DBS is NOT a cure, and does not neccessarily slow down the progression of the Parkinson's Disease. But it basically turn the clock back by about 5 years, often reducing the need for so much medication. Electrical leads attached to a battery pack/programmer, are programmed to deliver electrical stimulation to a specific part of the brain that deals with movement, and other effects of Parkinson's. While we have come to find different DBS teams may do things differently, Our DBS team at Univ of FL feel it is better for patient to do one thing at a time, before stressing the body out further. So they do 4 surgeries. The first surgery (have to be awake for) is when they must go into the brain and insert the electrical lead in a very specific location in the brain. A month later, after the brain has been allowed to heal, the neurosurgeon puts you to sleep for this one. He takes excess wire that was left over from first surgery and trails it under the skin, down the side of the neck to the chest area. A battery pack/ programmer is put under the skin in the chest area, and the wire connects the programmer to the electrical lead. The programmer is turned on, in recovery, so you start to get used to it, but is not fine tuned for a week. Then every month for the next 6 months,it is a visit to the neurologist where programming and medication levels are tweaked with the goal being optimal benefit. Our medical team is located in Gainesville, FL at Shands Hospital in the Univ of Florida. For us, that is a 5 hour drive one way. Each surgery we stay up there in a hotel near the hospital for an entire week, and monthly visits we usually have to stay one night for those. After 6 months, a re-evaluation is done,and as in Michael's case, the whole process is repeated on the other side. His second side was done August/Sept 2008. Then 6 months of monthly visits. For my husband, DBS has given him his life back! I had tears in my eyes, when they turned on the second programmer and I realized that for the first time in 12 years, nothing on my husband was moving. He was in total control! He continues to do great!! Throughout all of this we were writing our first book and in December 2008, our book was released through Harper Collins Publishing~"Living Well with Parkinson's Disease" by Gretchen Garie & Michael Church. We have been doing a lot of speaking engagements throughout the country. We are working with the McKnight Brain Institute at Univ of FL, as well as a friend of ours who also has PD to create a second book that will be used as a teaching book for patients & families looking into DBS, as well as for doctors, nurses, and medical staff to help them know how to treat us properly. It appears that we will be going through the DBS journey again, beginning in October, 2008. This time, it is my turn. The medicine is not working as well as it should, and I am having to take it much more often. There has been more progressions, and after much prayer and talking with our evaluation team, it is time!! Our research appears to indicate that Michael and I will be the first "bionic" couple in the world!! I can see a made for TV movie out of this one!!! When not doing something with Parkinson's Advocacy. I remained a political junkie, and Michael and I have run a few school board and local commissioner races. Always trying to improve the quality of education here and fighting corruption.