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Yes, the Muhammed Ali PD Center has begun a data base. We filled out the
questionnaire last year but have not heard much about it since. I don't
know how that's going. Does anyone? Maybe we should let them know about
the need for a training document for doctors and other such items.
C and T Menser
----- Original Message -----
From: "rayilynlee" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, April 23, 2005 11:58 AM
Subject: Re: Training document for MD's
> There is a data base on PWP at the Barrow Neurological Institute in AZ,
but
> I was not asked these kinds of questions.
>
> It is very difficult to get anyone to understand this
> disease or what it is like to have it.
> Ray
> ----- Original Message -----
> From: "Dolores Buente" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Friday, April 22, 2005 11:42 AM
> Subject: Re: Training document for MD's
>
>
> > Hi Bill,
> >
> > I like your idea of making up a training document for MD's. My original
> > idea
> > was that we have a national database of all PD patients with a history
of
> > exposure to different chemicals, hereditary factors, head injuries, age
of
> > diagnosis, etc. Also would be included; a list of symptoms that were
> > experienced
> > prior to diagnosis: foot drop, lack of arm swing, depression/anxiety,
loss
> > of
> > balance, pain, frequent urination, etc. My feelings are that if you get
> > enough
> > people to provide enough data that you will eventually begin to see some
> > common
> > denominators. Hopefully it would divulge experiences/lifestyle/events
> > that a
> > majority of people with PD share and thus would reflect a possible cause
> > for
> > PD.
> >
> > After a few inquiries, I was left with the impression that this would be
a
> > pretty expensive proposition and that the money would be better spent
> > elsewhere.
> > Well, I see a LOT of money being spent in many directions but I'm not
sure
> > that we are seeing a great big BANG for the buck.
> >
> > If every physician who diagnosed a new PD patient would have them fill
out
> > this type of questionnaire (this would also include their current PD
> > patients)
> > and it was entered into a National Data Base, I do believe that we would
> > eventually begin to see a pattern emerge as to a common cause of PD.
> >
> > Since this avenue of exploration is not being pursued, I think the next
> > best
> > thing might be to have the medical community more informed about the the
> > symptoms of PD and a combined list of symptoms sounds like a good start.
> > Sooooo........Here's my contribution.
> >
> > 1. Experiencing feelings of anxiety, worry, pessimism, gloom & doom.
Not
> > in
> > character with my normal personality. ( I chalked it up to menopause.)
> > Now I
> > am learning that there may be a connection between the loss of estrogen
> > and
> > the onset of PD.
> >
> > 2. Aches, pains, general over-all feeling of not being well. Unusual
> > fatigue
> > and need for afternoon naps. (This one I tagged as "getting older".)
> >
> > 3. Strong burning in leg muscles and fatigue after nominal physical
> > activity. (I thought I might have fibromyalgia.)
> >
> > 4. Developed drop foot. Saw a neurologist who ordered MRI. He saw no
> > problem with my test results. Told me to "Go home and live with it".
You
> > must know
> > what my opinion of him might be. (I had to think that this must be a
> > result
> > of chronic knee problem I'd had for years.)
> >
> > 5. Pain in lower back and left leg, stiff neck and shoulders. (Had
> > recently
> > fallen playing volleyball. My left foot had stuck to the floor when I
> > went up
> > for a ball and I fell...sound familiar? Saw a sport's medicine doctor.
> > He
> > did X-ray and finding nothing too unusual aside from some mild arthritis
> > he
> > likened me to his 89 year old mother who was not adapting well to the
> > limitations
> > of aging. I, at this time, was 57 years old and did not appreciate his
> > condescending attitude to say the least. I still have the pain and it
is
> > becoming
> > worse but it is relieved somewhat when my Sinemet is working.)
> >
> > 6. Dizziness when going from a squatting position to standing. (This
> > played
> > heck with my putting ability in golf. My blood pressure was normally on
> > the
> > low side so I guessed I needed a little more salt in my diet.)
> >
> > 7. Frequent and urgent urination. (I went to my primary for urine
test.
> > Thought I had bladder infection. Test came out normal. Go figure...)
> >
> > 8. Spacey feeling. Began having trouble with my sense of direction
when
> > driving and balance when walking. (Now I am beginning to get VERY
> > worried.)
> >
> > 9. Short term memory was becoming poor. Coordination was declining.
> > Multitasking was frustrating. Sense of humor was on the decline.
Things
> > were
> > making me nervous that shouldn't. The corners of my mouth were turning
> > down and my
> > lips were becoming thin...I was becoming a nervous, thin lipped, grim
> > faced,
> > slack jawed, clumsy and tired old lady.
> >
> > 10. Arm swing/left side, diminished. Same side as foot drop. (Time to
> > see
> > another neurologist.)
> >
> > And finally a diagnosis: Parkinson's disease.
> >
> > That pretty well completes my list. I'm sure that I have neglected to
> > include a few more symptoms that I was experiencing but can't think of
> > them at the
> > moment (another clue!) I hope this is of help in your attempt to
> > enlighten and
> > educate today's doctors on the symptoms to look for in PD. I know that
I
> > went through two years of searching for an answer for my ills and many
> > times felt
> > rebuked and dismissed as either a whiner or a hypochondriac. In those
two
> > years, I lost a lot respect for and trust in the so-called
"specialists".
> > I
> > hope that this might help to spare others that experience.
> >
> > Dee
> >
> > ----------------------------------------------------------------------
> > 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
>
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
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2000, Week 2 April 2000, Week 1 March 2000, Week 5 March 2000, Week 4 March 2000, Week 3 March 2000, Week 2 March 2000, Week 1 February 2000, Week 5 February 2000, Week 4 February 2000, Week 3 February 2000, Week 2 February 2000, Week 1 January 2000, Week 5 January 2000, Week 4 January 2000, Week 3 January 2000, Week 2 January 2000, Week 1 December 1999, Week 5 December 1999, Week 4 December 1999, Week 3 December 1999, Week 2 December 1999, Week 1 November 1999, Week 5 November 1999, Week 4 November 1999, Week 3 November 1999, Week 2 November 1999, Week 1 October 1999, Week 5 October 1999, Week 4 October 1999, Week 3 October 1999, Week 2 October 1999, Week 1 September 1999, Week 5 September 1999, Week 4 September 1999, Week 3 September 1999, Week 2 September 1999, Week 1 August 1999, Week 5 August 1999, Week 4 August 1999, Week 3 August 1999, Week 2 August 1999, Week 1 July 1999, Week 5 July 1999, Week 4 July 1999, Week 3 July 1999, Week 2 July 1999, Week 1 June 1999, Week 5 June 1999, 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 1998, Week 4 August 1998, Week 3 August 1998, Week 2 August 1998, Week 1 July 1998, Week 5 July 1998, Week 4 July 1998, Week 3 July 1998, Week 2 July 1998, Week 1 June 1998, Week 5 June 1998, Week 4 June 1998, Week 3 June 1998, Week 2 June 1998, Week 1 May 1998, Week 5 May 1998, Week 4 May 1998, Week 3 May 1998, Week 2 May 1998, Week 1 April 1998, Week 5 April 1998, Week 4 April 1998, Week 3 April 1998, Week 2 April 1998, Week 1 March 1998, Week 5 March 1998, Week 4 March 1998, Week 3 March 1998, Week 2 March 1998, Week 1 February 1998, Week 5 February 1998, Week 4 February 1998, Week 3 February 1998, Week 2 February 1998, Week 1 January 1998, Week 5 January 1998, Week 4 January 1998, Week 3 January 1998, Week 2 January 1998, Week 1 December 1997, Week 5 December 1997, Week 4 December 1997, Week 3 December 1997, Week 2 December 1997, Week 1 November 1997, Week 5 November 1997, Week 4 November 1997, Week 3 November 1997, Week 2 November 1997, Week 1 October 1997, Week 5 October 1997, 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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