[MKane]

Thi s is for those of you new to PD so that you may avoid some of my errors.

I was dx;d in Sept. 1995 and spent a year in shock amd wallowing in self pity. I was 44. That year I also lst twso beloved pets, had a fiancee bolt and my enploer closed hus business. Not a good year! I stared on sinemet and tried a few other meds, but oncw I got to the correct dose sinemet was all I needed.

After a 4 month job search, I landed a great, but demanding postion with an organiztion that provided excellent health insurance and disability. During the time therei contined to board & ride my two Arabian horses. On weekends I cleaned & managed the stable. When Mirapex came out I tarted takimg it and it helped trmendously. The PD slowly progressed.

In 2003 I retired on disability. In 2004 I sold my home and bought a small farm in TN. It rejuvenated me. I shocked the neighbors with my ability to renovate both house & barn, and landscape.

While living in MD I had been treated by a neuro at Hopkins. Shortly before my move she was hurt in an accident and quit. I started to see a fine MDS at Vandy. In the winter of 2005 I started to have difficlty sleeping. In December 2005 my neuro gave me a script for Sinemet CR. it worked well until late in the Spring of 2006. I bgan to have severe burning sensations in my right hand and dyskenisa.

Mother's Day 2006 I was so bad that in the middle of the night I was taken to the local ER. There is was treated as a criminal, retrained, left lying naked, ad eventually straight jacketed and scheduled to be transported to a mental institution for the criminaly insane. A friend intervened and had me transferred to ICU. It was determined that the CR had built up and I was overdosed. The neuro who saw me in iCU became my new neuro.

Although I tried to continue on at the pace prior to the ER experience,it became more difficult. Fially in January 2007my neurotoldthaat due to the PTS of the ER expeerience the window for me to have DBS was closing.

On April 4.2007 I had Bilateral STN DBS at Hopkins. Initial programming was exactly one month later. I waslked out a new person. Three weeks later I had a major meltdown. I was unable to walk or talk, severe dyskenesia and double vision.

I flew back to Baltimore for more prgramming. Again very sucessful. Until August and then another meltdown. Flew back to Hopkins and was made right again.

On New Years eve I had the worst meltdown ever. The programmer at Hopkins was out of the country. My local neuro was on the west coast. I sat for 2 hours t a local walk in clinic to be told that I needed to goto an ER 30 miles away. Friends took me there. There ws no neuro on call, but the doctor there tried to find one at Vandy and at medtronics. No luck. I spent the next few days very uncomfortable. Finally, on 1.4 2008 I flew back to Hopkins.After working with me for 20 minutes he was able to correct the problems on my right, butsaid that the PD had progressed too far on the left. (I just received the bill for this yesterday $963.00) Afew days after arriving home I had lost all feeling on the right and speech slurrred. Friends thought I'd had a stroke. Back to the ER 30 miles away for a ct scan. They gave me some sort of anestisa and I reacted with worse dyskensia & inability to speak.
CT scan showed no stroke.

The end of January I drove to Hopkins and was reprogrammed by a different prgrammer. Again, sucessfully. It held this time for two weeks. This time tremor was so bad I could not type or dial the phone. A neighbor came over and called neuro. He told her to use the hand held and ramp the voltage down. Because I was shaking so bad the wrong button was pressed and the shok put me down on the floor unable to speak. Whe the neighbor called back she was told not to call him again.

Frineds contacted the surgeon who did the DBS,he gathered the whole group including both programmers and th medtronics rep. A MRI was done and they still can't figure out a solution.

The impact of all this is that I must now find homes for my horses, sell my farm which i have mortgaged in order to pay medical expenses and for drugs.
Did I mention that I have $1,000.00 worh of one drug that I cannot take?

The moral here is that for a very long time I thought I could beat PD. I was wrong.