Parkinson's Disease Support Group

Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...

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peachybum 01/21/2013

Do you want to see a cure??? Get involved I say, look at these sad statistics.

Clinical trial recruitment is a challenge across all diseases, and Parkinson's disease is no exception. Thirty percent of all clinical trials fail to recruit a single subject and 85 percent of trials finish late due to recruitment troubles. Despite a willingness to participate, less than 10 percent of PD patients take part in trials. Patients pay the ultimate price for under enrollment in clinical research, as it means longer time horizons to treatment breakthroughs.

What is stopping you????? I volunteer! I will do anything to aid the cure!!

https://foxtrialfinder.michaeljfox.org/

deleted_user 01/21/2013

Peach I have to argue here a bit. I spoke with my doc Jan 3 and he is super involved in research. For me it's too far from home, too often and barely covers minimal expenses and then you get zero bucks if you don't finish the study! MOST of the studies are for stuff that is useless, like a way to take carbidopa levadopa fewer times in a day....by making it time released.... So now you can bet I will not sign up for that. It is more of a money making scheme than it should be. There is a differnt drug they're looking for people to try but you need to be able to be near the area I believe...I have info on it.

beekeeper42 01/21/2013

Holy schamoley, Peachy! You're right. There is a boatload of studies going on out there. Now... how many are relevant? How many am I eligible for? Well, I signed up.

Beekeeper

aliveo 01/21/2013

DO I WANT A CURE?
I FEEL DUTY BOUND TO VOLUNTEER MYSELF FOR RESEARCH INTO PARKINSON'S, MOST OF WHICH DOES NOT INVOLVE THE SEARCH FOR A CURE, RATHER THE FOCUS OF THE RESEARCH IS ON THE MANAGEMENT OF THE CONDITION, TOGETHER WITH THE ONGOING TESTS AND RESEARCH I AM 'CALLED IN' FOR REGARDING DBS.

MUCH OF THE FUNDING FOR RESEARCH PROJECTS IN THIS CITY OF PERTH, WESTERN AUSTRALIA, BOTH IN HOSPITALS AND UNIVERSITY IS FUNDED BY MICHEAL J FOX FOUNDATION, AND WE ARE MOST THANKFUL FOR THAT. WE ARE INDEED.
.

peachybum 01/21/2013

Yay for you Beekeeper42, well done with the sign up, Im very proud of you!

AliveO , that is how I feel, duty bound.

We Will Win - I understand where you are coming from , love you for your opinions.

Another site of interest is

https://www.23andme.com/

Have a read of what they do. I joined ages ago. PS it is free for people who have chronic diseases. You just have to ask them.

Darls43 01/22/2013

Peachy,

Thanks for the motivation. I didn't find a study that fits in with me and travel and work with kids still at school... BUT I found a group called PD warrior that might help me be a stronger person. They are new and only in Sydney but its a start to getting on a young-on set study that might be suited to me!

http://www.archealth.com.au/PD_Warrior

Thanks for the inspiration

Happy Australia Day

Cheers
Darlene

pgrandmaof2 01/22/2013

THANK YOU, Thank You, thank you - Peachy Bum for bringing up this VERY important topic for discussion.

I am actually a Trial Ambassador for Michael J. Fox. They have some new and innovative ways to help get the word out to PD patients that they are currently working with. In my small community I have not encountered another PD patient even close to my age - yet my ears are always tuned in to get the word out to anyone looking to do some good for this cause.

The University hospital recruiting for studies is about an hour away - a drive I will gladly make should I ever qualify. I am signed up thru Michael J. Fox's site to be alerted to any study they think I may possibly qualify to participate in. (No cash reimbursement as far as I know of.)

And, thank you for mentioning 23andme.com . It is free for PD patients, super easy to do, and what you find out about yourself is absolutely fascinating - and quite helpful. (For example - I found out I have a 25% chance of developing breast cancer due to the genes/markers I carry. In fact - I gave each of my daughters (adopted) a 23andme kit for Christmas!

I am the kind of person that would do ANYTHING if I thought it would improve the lives of the diagnosed with PD in the future! And, to be even a small part of finding a cure for this disease would make it all worth it.

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