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Parkinson's Disease
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Posted 2/8/2009 2:04 PM (GMT 0)

Jan 14, 2009, my doctor told me I have Parkinson’s disease. My Dr suggested that I get into a clinical trial. I found one that will start in March. Does anyone have any experience with this? I would like to hear any comments, suggestions, and experiences. Thank you.
Posted 2/9/2009 9:44 PM (GMT 0)
I have done a clinical trial. I think you will find that the care you receive is outstanding, You will also be furthering the understnading of the disease itself. They aare not without risks, depending on the trial. The way I felt, I had nothing to lose. If you have any specific questions, contact me at [email protected]
Best of luck
Posted 2/26/2009 8:57 AM (GMT 0)

I hate to be the voice of gloom, but I also participated in a trial and ultimately it wasn't a great experience. Please don't take this as an argument against your participation. Obviously, there is a lot of potential good that comes out of trials. But as with everything when you are faced with a serious illness, you must be your own best advocate. And that starts with gathering as much information as you can. There is a lot of good information out there about clinical trials and there are groups that advocate for participants of trials. I would start with the NINDS Web site.

http://www.ninds.nih.gov/


Post Edited By Moderator (yekkimo) : 2/26/2009 5:48:06 AM (GMT-7)

Posted 2/26/2009 4:49 PM (GMT 0)
Thank you ADubya0522... I did use the NINDS website to find the trial, as well as a site that tells your rights when participating in a trial.  I was told this would last 5 yrs, but I can drop out at anytime if I want to.  I appriciate your input, and I will go into the trial with a positive additude.   
Posted 2/26/2009 6:53 PM (GMT 0)
I'm glad that I could help. Good luck and I certainly hope it goes well for you!
Posted 2/26/2009 8:42 PM (GMT 0)

I just thought of something else that I think is important. This sounds like it won't be an issue for you since it was your doctor who suggested that you look for a trial, but I do know some people who don't have a neurologist and rely on the doctors who are conducting the trial. I think it's really critical that you have your own neuro, and that s/he is someone you trust. If you don't, one way to do this is to do a google search for PD Centers of Excellence.

Again, best to you!

Posted 2/27/2009 2:43 PM (GMT 0)
I have a neurologist but I'm also involved with INDD (Institute for Neurodegenerative Diseases) in New Haven.  They are the best thing that ever happend to me.   The doctors are wonderful, will talk to you, explain anything and have your safety come first.  I feel very lucky, dispite my parkinsons.

Posted 2/27/2009 5:18 PM (GMT 0)
I have to use county medical, due to lack of funds. The appointments to my neurologist are about 6 months apart. I was kind of looking forward to seeing a neuro from the clinical trial. I will be seeing that DR more than the one at the county hosp. I am hoping the care will be good since PD is the Dr. specialty
Posted 2/27/2009 7:07 PM (GMT 0)

I'm happy to hear that.  As part of the clinical trial I participated in, I was seen at New Haven also.  You're right, the facility there is great.  The only reason I brought it up is that the role of your primary neurologist is to look after your best interests as a patient and not just a trial participant.  It sounds like you've got it covered.  Best of luck to you!


Post Edited By Moderator (yekkimo) : 2/27/2009 5:40:55 PM (GMT-7)

Posted 2/28/2009 5:49 PM (GMT 0)
Thanks ADubya0522 for all of your advice. Since this is all new to me, i can use all the advise I can get. My father had PD and Alzheimer's. I can't use his PD as an example for me. Seems all he had from PD was a tremor. I have been experiancing so much more.
Posted 3/1/2009 3:52 AM (GMT 0)
Hey wolfpup. It's frustrating and overwhelming, isn't it? Not to mention terrifying! But you will muddle through and believe it or not, you will find blessings in this. I'm not being pollyanish or in any way trying to downplay the difficulties of living with a serious illness. All I can tell you is that it has done this for me. But back to practicalities. I just wanted to mention something my neurologist told me early on - nobody who has PD gets every symptom, and every person gets a different version of the disease. I'm not sure how old you are, but young-onset PD tends to come with a very different set of symptoms. Is your neuro aware of your family history? If not, please be sure to mention that. There is a great deal of research going on around PD and genetics.

Post Edited By Moderator (yekkimo) : 3/1/2009 6:32:36 PM (GMT-7)

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