Wednesday, September 30, 2009

Computer Savvy

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Today was quite the day for me on the computer.  I usually just stumble in and out of sites and always spend way too much time wandering around and going back and forth.  I have vowed to change this in the coming year.  This may be harder than I think but today I attended my first webcast on the computer at PDF.org and it was excellent.  Melissa J Niremberg M.D,, PhD. from Weill Cornell Medical College, New York, N.Y. was the guest speaker .  Her topic was Myths and Truths with Parkinson's.  The site was easily accessible and extremely well formed.  I took four pages of notes and felt like she was hitting all the things I had always wondered about.  The webcast will be archived October 5th for continual viewing.  November 17th will be the next webcast and it will be on Caregivers.  This may turn out to bee the safest way to get information this winter.  You can get your beverage of choice and snuggle down with your computer with no exposure to the flu.
Some of the highlights where that Parkinson's is a disease you can take on and still have quality of life.  One of the statements she made particularly hit home with me."Parkinson's cannot get suddenly worse without a cause." Be it infection, another illness or medication changes, look for the underlying cause and do not stand for the statement,"It's just your PD."Another myth is that Sinemet stops working after five years.  Wrong.  Huge on the scale of things to look for is Urinary Tract Infections. These are very common in PD patients and can set up a lowgrade infection before you know it.
Movement disorder is only a part of PD.  Non motor symptoms rank high.
1. shoulder pain...misdiagnosed as rotter cuff when increased sinemet can improve it.
2. lose of smell may come on many years before actual diagnoses
3 .corpule tunnel misdiagnosed  and is actually PD.
4 .Rem disorder may start 2 or more years in advance of diagnoses.
5  Cognitive issues.
6.  Blood pressure drop when standing.
7.  Fatigue...fatigue...fatigue.
8.  Intestinal and bladder problems.
9.  Depression and anxiety.
people and doctors tend to notice what they see and do not know about the motor skill problems if you do not tell them and be hard headed about it.  Don't just take a simple answer as the gospel.  Do your research..Good luck  love Pokie

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