I cannot believe nobody is talking about the World Parkinson's Congress (WPC). Maybe you have earlier?

I am here with Lindylanka and Aun't Bean . They are in the other room chattering like teenagers. We got here Saturday for a pre-Congress meeting with the Parkinson's Disease Foundation. Tomorrow is the start of per-congress courses, and We'd., Oct. 2 is the real official kick-off. You will be hearing about every research topic being now conducted - from gene therapy to stem cells.

I will try to keep you posted as to what I hear and see and others can post what news they hear under this thread or post a new one. http://www.worldpdcongress.org. Go to this link I just pasted to see schedules.

You will hear that our book that evolved right out of this forum is now taking orders. Info about that will be posted soon.

Today I met some people from the UK who, like me, have been helping pass the Word asking everyone to join a grassroot GLOBAL group who are committed to getting therapies and drugs approved faster, but. ( listen to our mantra ) NO DECISIONS ABOUT US WITHOUT US, simply put the Parkinson's Movement (PM) supported by the Cure Parkinson'sTrust, if accepting members. No cost unless you want to donate a little time. More on that soon.

Is it possible to have hundreds, no thousands join hands for this purpose? It surely is! If you are here in Montreal, stop by their booth (will post numbers soon) and I will be telling you how to sign up very soon.

Have a wonderful time in Montreal!

I’m looking forward to postings about your experiences. I know many people from the Connecticut Parkinson’s community attending. My support group’s October meeting will be all about the WPC.

Jill

I took lots of notes at the WPC on many different subjects. These sessions were denoted in the program lineup with little beakers with varying levels of color in them that showed whether the session was highly scientific, somewhat scientific, or totally accessible to the nonscientist. I did not attend any of the sessions that had full beakers. So, briefly, here are my notes on various sessions I attended. please excuse any typing errors or any errors that make the information somewhat incomprehensible. I tried. Since I am not able to write, all my notes were made my little iTouch. I am posting the same information on the Pedaling for Parkinson's thread.

Nonmotor symptoms:
They appear 15 to 20 years prior to motor symptoms
they are idiopathic
the causes are different for each patient
multiple factors lead to PD
understanding the causes is crucial to developing treatment
basic research is critical

Vary treatment for patients needs
patients must participate and advocate for selves
drug studies should be done with cohorts of patients with similar symptoms
there is no compelling reason for genetic testing at this point in time. Stay tuned. What will the information do for your and your family?

It is likely that idiopathic Parkinson's disease is not one disease. Therefore it is not likely that there is one biomarker.

Motor serum urate is a predictor of progression of Parkinson's. Inosine is a potential disease modifying therapy. It raises serum and CSF urate levels in early PD. It's generally safe, tolerable and effective in raising urate levels.

Non-motor symptoms:
sensation: loss of smell is a very early indicator; visual blurred contrast sensitivity that shows up particularly in reading is another early indicator
behavioral depression due to chemical changes
anxiety appears in 40%
apathy, less emotion, general indifference
dementia
executive dysfunction
sleep problems appear in 74 to 98%
REM disorder appears in 50%
pain shoulder, constant rigidity, stooped posture are all early indicators
fatigue
not all of the above are related to dopamine deficiency.

medical treatment varies on the phase of the disease. The Movement Disorder Society website has drugs and their uses

if you are concerned about dyskinesia, don't take sentiment as you will likely have more dyskinesia. (I wish I'd taken better notes in the session. I'm not sure I could explain that one.)

Patient engagement. It is difficult to extrapolate the experience of 30 to 300. The strongest indicator of success for PWP's is self-management and efficacy. The take away point is to be engaged in your own treatment.

Need for research: we need to know what drives the disease.
We don't have a good way to figure out what is going on with individual patients.
We need biomarkers, objective handles.
There are nonscientific roadblocks, such as participants in trials, regulation, funding, scientific cooperation.
The approach is fragmented.

More on nonmotor symptoms: smell, pain in the shoulder, fatigue in the mind. As well as being a motor disorder, PD is a neuropsychiatric disorder. There is evidence of extraniagral PD pathology.

tango studies show strong improvements over continuous period of time, with improvements continuing up to a month after stopping the tango. Generally these classes are one hour or one hour of twice a week.

Exercise in general: we know that it slows the disability;we don't know whether it changes the progression of the disability. Intensity varies per individual. Find a level and push beyond it. use a variety of exercises; strength, cardio, stretching, balance. Exercise a minimum of 150 minutes per week. What kind of exercise doesn't matter as much as the level. You need to sweat. Think of it on a continuum of 1 to 10 and put yourself at Level Seven. biking is easier than walking for Parkinson's patients. You can use a metronome to regulate walking. Try to speed up your exercises. Using a pedometer helps. Exercise when medications are working, not when you are stiff. People who expect good outcomes get them. Take charge of yourself: self-efficacy. Experience success.

Could the statement above have actually been "don't take sinemet as you will likely have more dyskinesia"?

Nan, thanks so much for taking the time to update us.

Gary