| 27 Month Update I no longer visit my neurosurgeon for adjustments. I now see a movement disorder specialist for any programming or med changes. He is my primary PD doctor. My local neuro just sees me after my med/programming changes. At this visit, Medtronics sent a rep directly from Minnesota to hand deliver my Access Review Controller. It is wonderful to have the piece of mind knowing that I can "officially" check to the on/off controls, as well as battery life. My dystonia is now controlling my entire left side, making everday tasks painful, if not, at times, impossible. I need help. My doctors continue to be puzzled as to how to help. No more sinemet!! Too many dyskinesias from only 1/4 tablet of 25/100 a day. DBS is obviously doing it's job well. I checked our county resources, but because of my age (45), and the fact the personal hygiene can still be done on my own, no help is available to me. So, my mom has been coming weekly to help with cleaning and keeping my house manageable. In addition, I contacted the school to see if I could qualify for an "elder visit". Our high school has students do community service projects, and that is one of their projects. The coordinator immediately said yes, and within a week I had help at my door. It happens to be a former Kindergarten student of mine, whose parents I went to school with. So, I have overcome the pain and embarrassment of asking for help. It is still hard to just sit and watch others work, though. I help as much as I can, then I need to rest. I now also among the ranks of the "fixed income", now that I am retired. It is so scary...but I am getting by ok so far. Retirement was a hard decision, but a correct one for me. |