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wow.... this is such great info to know.... i love this list serv:>) patti cg 16 On Dec 29, 2009, at 4:25 AM, chew nee kong wrote: > 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. Find the right PC for you. > http://windows.microsoft.com/shop > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn