DBS experiences
 

I was on 21 25/100 pills per day in addition to 3 50/200. My paranoia was so bad along with on and off time every hour. I was dx in 2005 although symptoms were visable in 1999. The worse my symptoms got the dosages were increased. I went from normal functioning to off time unable to walk in 5 minutes. Unpredictable to make my life totally unmanageable. Sometimes I was in a wheel chair sometimes not. DBS was my only option. The past 2 months I have only had on time and have not needed the wheel chair. I go to the gym every day for an hour. My stimulator has been adjusted twice and my medication reduced to 14 25/100 and 2 50/200. I have my third programming in 3 weeks. The plan is to reduce my medication again. I have been totally "on" and hope that it lasts. I would recommend DBS to anyone who has problems like mine . There is a book by authors Farris and Giroux a patient guide to DBS
available from Amazon. The surgery was no big deal and all my fears did not happen. It has given me my life back. I hope it lasts . It does not stop progression but the neuro can program as needed.
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Recommendation?
 

Damon4309, my husband had DBS in April, had 4 Programming sessions, and it has been a disaster. He has not had nearly the success you have had. Can I ask where you had your surgery done, and if you could recommend a good programmer in the tri-state area? TIA :o

Dbs
 

Good morning

I went to a surgeon who has a reputation as one of the best.

He is Dr Hooman Azmi
Brain and Spine Center
680 Kinderkamack Road
Suite 300
Oradell, nj

The programmer is Dr Fionan Gupta
The procedure was done at Hackensack Medical Center
Same address

Medtronic was actively involved.

Best wishes
Damon

The doctor and the disease
 

Some of you might enjoy listening to a 30 minute podcast from a weekly radio show called, "White Coat, Black Art". It features Dr. Philip Hebert, a family physician who has PD recently underwent DBS and had a good outcome. Part of the program deals with the doctor's denial when the symptoms were so obvious even to his patients and the ethical issues he faced when he really could not properly discharge his duties as a physician.

I met Dr. Hebert at the WPC in Montreal a year ago. He stuck me as a man between a rock and a hard place. I feel that he made the right decision in opting for DBS.

**

Clyde

Interesting research about DBS
 

The short answer is deep brain stimulation (DBS), a targeted form of electrotherapy used to treat brain disorders like Parkinson's disease and OCD. The long answer, i.e. why DBS is sometimes so remarkably effective, remains poorly understood – but researchers this week took a big step on their path to understanding the technique.



http://io9.com/mans-parkinsons-tremo...utt-1641677470

PIGD people
 

Does DBS work as well for PIGD people as tremor dominant people?

DBS Advice
 

Damon,

Thank you so much for the information. I hope we can get my husband the same miraculous success you have had. Your programmer and the doctor titrating your medications must be very good at their jobs!

SkyeDawn

Dbs
 

Your welcome feel free if you need anymore information

Damon

DBS paranoia?
 

Hello Damon,
Before DBS you were taking a large dose of l-dopa, I didn't know that much is prescribed. You also said you had paranoia.
My wife is about where you were but her neuro wants her to keep daily l-dopa below 900 mg. She has severe off times and bad dsykinesia but the hallucinations and delusions have become so bad we are having an impossible time caring for her. DBS was ruled out for her 6 months ago because of the "psychosis".
How bad was your paranoia and is it better now? Could you be specific? How were you permitted to receive DBS if paranoia is one of the conditions ruling it out?

Dbs
 

The dosage I was taking 21 25/100 and 3 50/200cr. In addition at 1 point I was also taking 18 mg of Requip. I was dx as paranoid psychosis. Requip is the worst medication IMO We tapered off the Requip . My paranoia was ruining my life. I thought there was a plot by some group who would follow me around and even look I my windoin thews. I was loosing my mind. Gambling, hypersexuality, delusions......The paranoia did not go away when the Requip was stopped. My dosage of sinemet was very high but my disease was at the point where I needed help during the day to function. The sinemet dosage was taken very 2 hours. I would go from being "on" to "off" in a matter of minutes. Because of this I could not go out alone and always had a wheel chair in the the trunk of whomever was driving. Prior to DBS I had to see a psycho-neuro specialist to insure I understood the limitations of what DBS could do. The ideal candidate is someone who's medication is is not working any more. Stage 2.
To combat the paranoia my psychiatrist prescribed 5mg Dyplexa which helped me sleep (and gain unwanted weight). I plan on stopping this soon. On 10/22 I will have my 3rd programing and the sinemet will be reduced more. Sorry for the spelling errors I can not find spellcheck.
Hope this info helps
Damon