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