Finally joining the fight, a brief histo... - Cure Parkinson's

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Finally joining the fight, a brief history of my life with parkinson's dbs before during and after

Captsteve profile image
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Well I was told I had Parknsons about the year 2000 I was 30 years old .I had to retire from law enforcement in 2005 . This was total hell and I became seriously depressed .So I started doing a lot of fishing. Then social security took away my monthly benefits b/c I was getting better . No stupids, I was just taking more meds to keep myself walking . Then I did what at the time I thought was the dumbest thing I ever done, was have deep brain stimulation.

During the 2nd operation I develop a staff infection and had a grand-mall seizure which nearly killed me. The doctors took the dbs on the right side out of my brain for the time being. Just this past summer I finished up the dbs operation and have everything turned on, I guess one would say. Luckily the side they removed was the right side of my brain being that controls the left side of my body which wasn't that bad or has' nt been yet. So when the left side was turn on I was like a new man right away my stiffness in my face arms hands went away I was able to walk Its been a god send. I still take meds for the left side but its maybe one third of what I use to take. Know the question is will I ever have the operation completed., Most likely is yes. I not going to lie during the two years of seizures and infections I was wishing I never had it done. It's a scary operation which almost cost me my life several times. Now I look back feeling good I say it was worth it, but the are a bunch of what if' s in those two to three years. I had a lot of complication but before the operation I could feel myself getting worse taking more and more seimet to make it through a day. So I still have to decide whether or not have the operation again or not, So I always go by the old saying " get busy living or get busy dieing" So we will see .

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Captsteve
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mjreader profile image
mjreader

My father has Parkinsons. He and I both say "get busy living." I wish you well!

Captsteve profile image
Captsteve in reply to mjreader

thanks for your comment. i am tring

compucure profile image
compucure

I had a second DBS op o Sept 17 this year to reposition one of the electrodes which was causing violent shaking on my left side. I have found the whole experience overwhelming and am waiting to see the benefits. I am able to remote control my stimulator which I have set to 2.50 on both sides. When I am on the meds all is fine and dandy but bad when they wear off!! Out of the most .....Tony

Captsteve profile image
Captsteve in reply to compucure

Really i' ve had some shaking like that, usually when i take too much meds. but my major problem was stiffness. Your right overwhelming thats one way of putting it!!!.. All i know is, I was awake and they were in my brain. I really went in blind,,, I refused to any watch any video or read anything about it. Luckily I didn't b/c I probably would have not done it. That's why the thought of a second or third operation kinda freaks me out.. My setting on a 1.0. I had pd for about 12 years now 42 yo. Its a tricky disease it effects everyone differently. i dont know if this is true but my drs say, I was an excellent candidate for the operation,.. I am guessing b/c I was young I had some tremors but stiffness was my major problem . thanks for your comment i hope you see something good soon

Keep in touch.

steve

karenwoodhouse profile image
karenwoodhouse

I Had DBS in May but the programmes i saw before i had the op showed an instant improvement but my progress is much slower. i'm 41.

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