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
>
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