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Dear Ray / John Both of you are discussing a highly relevant issue among Parkinson's patients who have undergone DBS. Nowadays, it is known that in many patients, the speech either does not improve or worsens after the DBS. This is what we explain to potential DBS candidates prior to the surgery so that they know what to expect. The mechanism of speech disorder in Parkinson's is probably different from the tremor and rigidity of limbs. NK > From: [log in to unmask] > To: [log in to unmask] > CC: [log in to unmask]; [log in to unmask]; [log in to unmask]; [log in to unmask]; [log in to unmask] > Subject: Re: Getting to the Problem of "Strangling" after DBS > Date: Mon, 28 Dec 2009 12:07:00 -0700 > > John > > thanks so much for this information. I am convinced now my voice problems > are due to DBS, not PD. So far you are the only person I know who > understands that raising the voice leads to "shouting". In fact, I doubt > that people with soft voices from PD could ever make the loud sounds I do. > I started having trouble speaking in 2003-2004 after my bilateral DBS. > > I don't turn my NTs on and off because I fear the tremors and turning them > back on again. I do have high settings and had my first replacements July > 2007 even though they were still working fine. > > I'm thinking my condition is similar to Tourette's syndrome in that the > sounds are very offensive. > > People planning DBS should know about this. > > I think the most frustrating thing about PD is that people don't > understand - they can see a tremor, but misjudge what they hear. > > Strangling is the closest I can come to describing what it is like to speak > either soft or loud. People just don't get it and I can't explain, > converse, or argue. > > thanks, John. > > Ray > > Rayilyn Brown > Director AZNPF > Arizona Chapter National Parkinson Foundation > [log in to unmask] > > -------------------------------------------------- > From: "John Cottingham" > <[log in to unmask]> > Sent: Sunday, December 27, 2009 9:40 PM > To: <[log in to unmask]> > Subject: Getting to the Problem of "Strangling" after DBS > > > I am a 10 year veteran of bi-lateral DBS and have had the same symptoms > > when drinking, having a dry cough and a tightness in the throat > > interfering with enunciation and in general sounding like a drunk. > > > > I know what frustration you have trying to be understood and raising the > > voice in some cultures is an affront. Even family understand this > > frustration of me shouting (their interpretation) and occasional folks > > like store clerks avoid me. > > > > Number 1. After my trip to San Francisco for stimulator replacement and > > reprogramming I frequently choke on drinks, tiredness brings on > > frustration by trying to be understood and speech appears drunken. > > > > For years I found I could cope by turning off the right chest stimulator. > > Depending on which side is most disabled would determine which stimulator > > to turn off. If you have to make a public speech, turn off the offending > > stimulator and put the shaking hand in your pocket. My right stimulator > > controls the left hand which I use to write. I just don't write when I > > feel I may be called on for interaction. > > > > Number 2. There is crosstalk in the halves of the brain that cause head > > tremor and tightening of the vocal cords and the throat. By turning off > > the contralateral unit, you regain normal voice volume and your diction > > will be restored. Chances are that your head shake will not be noticeable > > if you have either the yes-yes or no-no type. So far several programmers > > have not been able to discover a program combination that will alleviate > > these quirks and most of the time do not recognize the symptomatic > > unintended consequences of over programming. Your primary care doctor > > should be alerted that you are a hybrid patient and to not attempt to > > treat parts of the body that are prone to paranthesias from the devices. > > Case in point is I came down with a virus which involved mucous and hard > > coughing in which I could not stop long enough to bet my breath. > > Antibiotics cured the biological part but the coughing prevailed. At that > > time my stimulators where on 24/7. I turned the right stimulator off and > > the coughing and choking disappeared. > > > > Number 3. If your stimulators are programmed to produce a high voltage in > > order to control your symptoms, you will eat up stimulators in short > > order. Here in the Philippines they cost about $20,000 each which might > > sound cheap compared to the hospital billing medicare pays. U.S. medicare > > is not accepted here. Higher stimulator settings lead to more side effects > > and shorter life. > > > > In conclusion, Ray, good help is hard to find! Barbara Patterson and I > > sure appreciate all you do here helping keep us informed. > > > > To the rest, we wish you all a Happy and Prosperous New Year and for those > > in Asia, the same for Chinese New Year! > > > > John Cottingham > > co-owner Parkinsn > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: > > mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > _________________________________________________________________ Windows 7: Simplify what you do everyday. 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