[lindylanka]

There are a number of things that patients knew before science 'proved' that they were 'facts' ........one of the notable ones that I remember is loss of sense of smell.....

Are there others that you can add to this, I know they are there but my brain is on strike this morning!

Lindy

[GregD]

For me, it was an altered gait and loss of balance that I noticed first. Both of which I blamed on ankle and knee injuries recieved from playing football in my youth.

GregD

[vlhperry]

Hi,

Unfortunately, not all People with a Parkinsons diagnosis lose their sence of smell. In particular, those with certain mutations of the Parkin gene.

One particular symptom, that caused much controversy, was younger women diagnosed finding the effectiveness of their meds the week before and the first days of their mensus cycle.

[LindaH]

In 2004 an online Harris survey brought to light the often disabling non-motor symptons of PD -- well known by patients, but not usually addressed or realized by neurologists. Such as pain, depression, sleep problems, etc.

the survey was in large part completed with the help of PLWP, a grassroots Parkinson's patients group and online discussion groups such as this one (Braintalk in those days)

Description of survey and results :
http://journals.lww.com/neurotodayon...kinson.11.aspx

I can remember when the results were made public, you could hear a collective "DUH!" among PWP worldwide. But non-motor (non-dopaminergic) symptoms are now a focus of research and treatment . Clue: listen to patients.

[bluedahlia]

Body temperature.......cold when off, sweats when on.

[Bob Dawson]

Hands and feet turn bright purple and later go white. Neuro, with many decades experience with PD, says he has seen it again and again with PWP but finds no mention of it anywhere in the literature, other docs do not confirm having seen that.

First direct question, "Do you have PD?" came from a long-time business friend who said I had started slurring my words and whispering in a droning monotone on the telephone. He told me that 10 years before diagnosis. His mother had it and he was sure I did too. He worked for a telephone company and had no medical background.

[Jaye]

i relized at a PLWP rally in 2000 in Kentucky that other people taking Mirapex were eating compulsively. Later that year I asked about it at a symposium. The doctors on the panel answered my lead-in question (whatever it was) and, smiling, tossed the eating question aside. I was even in a study where I was tested for a propensity to gamble, but food wasn't acknowledged as a drug side effect until much later, if at all.

Jaye

[Aunt Bean]

I am amazed at the medial authorities at times and tend to not even ask questions anymore....seems that veternarians know more and have more "horse-sense

[Jaye]

First described to me by Greg Wasson in early 2000 just before his posting "Are We Just Lazy?" on the early Braintalk, then called MGH. Does anyone have a copy of it?

Jaye

[pegleg]

I know many of you have been given bad information or a doctor has prescribed a medication for you that had horrible side effects. This is why WE MUST BECOME OUR OWN ADVOCATE! But don't throw the baby out with the bath water.

There are some wonderful neurologists - and some are painfully honest. Mine is such an example. He tells me "We don't know if or why this med wowrks, so we will give it a try and see what happens." Then the ball is in my park. As patientss (or unwilling victims with Parkinson's), we are at the mercy of what the FDA approves (in the U.S.) and what our doctors prescribe. The rest is up to us to educate ourselves on interactions, side effects, and availability.

The internet provides such access to resources at our fingertips, BUT BEWARE! They (marketing) are out to take you and your money - it's called "Phishing." Sometimes they gain access through your email - those are easy to spot. But maybe I'm just stupid, but this one on stem cells had me going. But once again the old adage proved true: IF IT SOUNDS TOO GOOD TO BE TRUE - IT PROBABLY IS."

PS - Science "proves" nothing - it just shows efficacy or consistent replication of a theory..