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Parkinson's Disease Clinical Trials For posting and discussion of clinical trials related to Parkinson's Disease, and for the Parkinson Pipeline Project. All are welcome.

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Old 12-10-2012, 04:45 PM   #1
lisa crumrine
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Join Date: Nov 2012
Location: woodstock ny
Posts: 1
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hi all i am a 54yr old with pd dx in 1993. ws on meds and they just stoppped working (so did my legs)2 years ago i decided to go for it with the dbs. it worked!most of my balance is there, i am a bit wobbly at times..my voice is clear and strong, my arms and my whoole body is remarkably still and flailin free.....my suregery was in two parts about a month and 1/2 between them... the first surgery was amazing...bliss/normalcy. it was all very exciting..........i wore my shevef head proudley, a pd miracle..some pain not bad. the second surgery was a bit different..not too bad but differenct,...my head hurt, and i got very sad/empotional /depressed...i d like to say yhat it was that i broke up with my boy friend, moved to a new redisdence, got a new caregiverall within 2 weeks of the brain surgery. not the best timeing!
anyways, i had a lot of cognitive fuzziness, couldnt look at a computer...it all blended together. (sorry a bout the typos...)i feel like all the attention and support disappeeared and i was on my own to deal with the weird head stuff. weird emotional outbursts. i just want to connect and share with anyone....im new so you will see me around oh io forgot to say that i am also an artist....stained glass mosaics....
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Old 05-14-2013, 09:30 AM   #2
butterfly53
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Join Date: Mar 2013
Location: NJ
Posts: 12
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Hi Lisa i to had a DBS put in 2 x , first one infected and had to be taken out , But felt great while it lasted . Was able to move and able to take care of my self , my voice was also strong , it was great .I exercised went to gyn , got personal trainer and did all i could do to improve . Swim , took walks weight training, you named i did it. then the disaster struck.The wires come out , through my skin on a head ,had a staff infection in the incision so after couple of repairs and wash out it was infected so bad that it had to be taken out You may ask y did not they take it out rite away. Well because i ask them not to.to do everything they can to help me keep it. See i could not do with out that. But despite their heroic efforts it could not be saved. the stubborn infection set in ,it become MRSA and threatened my brain. It had to come out. i was devastated . I tot i do harm to my self. But i hang in there. After 6 weeks of 2 kinds of antibiotics IV via pick line, put in by the hospital, administered by my good husband at home and paid by our selfs, another was put in . this one did not work as well as the first . Don't know why. First time i had only one wire, but because i had a problem with pulling to one site they put 2 sited one in and there was 2 batteries in my chest. The L site had to be turn on pretty high , for it to wok,my PD is worst on that site. Low and behold i had a fall in the gym , slipped on a wet floor had to have sugary , because of torn ligament which supports the arch, the DBS started working and i feel great again.I am going through PT and getting better , am on low doses of antibiotics for preventing flare up. But i am feeling good and am functional .But there is problem , the wires are coming out again in a 3 spots.It is not infected and i did not tell anyone yet ,but i will have to. Don't know what to do , am afraid thy will not put another in , Had total of 7 surgeries and the last one left me with wheezing for a 4 months after the procedure. I know what i have to do but i do not want to. Zlatica
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