 |
 |
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