Monday, January 31, 2011

Parkinson's Updates, Odds, Ends, Beginnings

PD Community Info Including Neupro Updates

If you missed the PD Expert Briefing on Physical Therapy and Parkinson's, What You Need to Know, you may have a second chance to watch, listen and to ask questions. Heather J Cianci, PT, Geriatric Clinical specialist, MS, trained in Lee Silverman Voice Therapy will be presenting the program again following a technical glitch.

We did attend the first broadcast - minus the slides - and although there wasn't a lot that we haven't written about on this blog, we still learned a few things.  Parkinson's Disease Foundation (PDF) has announced that the rebroadcast will take place on Tuesday, February 8, 2011 at 1:00 EST

We have questions about the use of Low Dose Naltrexone (LDN) by people with Parkinson's and are hoping that people who who have or are currently using LDN will provide some feedback about the experiences. There is an LDN Worldwide DataBase that would also like to have your input. There is quite a bit of information submitted by Multiple Sclerosis (MS) patients, but very little on PD. Just select Parkinson's from the left hand buttons. We have also posted links in the LDN articles.

Currently there is a study funded by a grant from the Michael J Fox Foundation, NCT01052831 Dr David Weintraub of the University of Pennsylvania in Philadelphia is studying the safety and use of LDN for impulse control disorders in PD. This study is still enrolling and Dr Weintraub reports that there is some limited travel money available.

Because LDN already has FDA approval for one use, it is not economically feasible for a pharmaceutical company to fund one for the use of LDN and Parkinson's disease. For this reason much of the information is going to be anecdotal. That is why adding honest information at a website or database is important. To add a comment at this website, there is always the option to remain anonymous.

We’ve also read the responses to LDN discussion at Patients Like Me and we are encouraged enough to make this a priority for the next neurology appointment.

We just came across LDN Science and think you might want to check this site for LDN information.  

There is hope for getting Neupro now
I'm sorry for the delay update about the Neupro (rotigotine) Transdermal Patch. I am pleased to report that although there is no program called "compassionate use" for people who were already using the patch prior to the withdrawal from the market and who have not been able to locate suppliers in other countries, there is an opportunity for people who have been on the patch and potential new users to receive it through the Named Patient Program, clinical trial.

We are providing a link to NCT0195484 which is a Named Patient Program with Rotigotine Transdermal System by invitation only study. The locations for the study are in Alabama, Arizona, California, Washington DC, Florida, Georgia, Hawaii, Illinois, Michigan, New Jersey, New York, North Carolina, Oregon, Texas and Washington.

We now have the contact email address and phone numbers so that your doctor can contact UCB to be sent the request for study enrollment form. The form would then be completed and mailed or faxed to UCB for consideration.  A patient must be under a doctor's care for consideration. I suggest speaking with your prescribing doctor. We will be provide you with all of the contact info (email, phone, fax) at UCB by email if needed.  Just click the email link.

OMG! We just found another Neupro Clinical Trial for PwPs in the USA who wanted to start the Neupro (rotigotine) Transdermal Patch only to find that it had been withdrawn from the market. There are strict inclusion and exclusion criteria but if the patient meets these, there is a possibility that you will be provided with the real patch.  We don't know if there is an open label trial at the end or not but we will try to learn more.  The trial is NCT00522379 and is of course sponsored by UCB, Inc.  Check it out if you or a family member might benefit from this Neupro clinical trial.

Time may be running out to contribute to the funding supporting the making of Ride with Larry, a documentary about the cross-state ride of a retired police captain in South Dakota who bikes to work every day despite or perhaps because he has had Parkinson’s disease for about 20 years. Although they've made their goal, they can still use your help. You can see a trailer of the documentary and donate at the site below.

Laughter is good medicine
Paypal donations for the documentary can still be made at the website. Just click the Make a Donation box. This is a 501(c)(3) organization.

People often ask what is the best medicine for Parkinson's disease and I must say that there is no best answer, what is best is what works to relieve your symptoms and will allow you to have the best quality of life possible. For most people, one medication, one treatment is not going to be enough. We still encourage everyone explore dietary adjustments; nutritional supplements of good quality; physical (exercise), speech, massage, occupational, music and dance therapy. Never forget the power of true laughter to feel better.

No comments:

Post a Comment

Welcome to Parkinsons Focus Today.
We are delighted to hear from you by comment here
or through email as found in Contact Us.

Please do not include email addresses if leaving a comment online.
Email addresses are used only for email responses.

Spammers take note: your messages will not be published. The comments section is for an exchange of ideas, not for backlinks.