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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.
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> ----------------------------------------------------------------------
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Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 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Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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