To the newly diagnosed
 

I recently sent this email to someone newly diagnosed with PD.

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I was 51 when diagnosed in January 2003. I had a tremor in one finger, did not swing my left arm when I walked, and lost my sense of smell 20 years before. When an MRI came up clear (no tumor) I got the diagnosis of parkinson’s.

I went through months of angst and denial – but the diagnosis was correct (unfortunately). But you can help yourself. This does NOT have to be as terrible as you fear. Here are some things I’ve learned in dealing with this disease, and for your health – I recommend you start them now:

There is a lot of evidence that EXERCISE can help – so an overweight couch potato like me now walks, swims and bikes (nearly) every day. Do anything – everything you can do starting NOW: yoga, tai chi, weight training, walk, treadmill, bike, etc etc – every day – do as much as you can and start now. While there is nothing proven to slow the progression, exercise may help, plus there are supplements and foods that have shown that they may help (eat/take them now):

• Dark berries (blueberries, blackberries, raspberies, etc)
• Dark grape juice
• Curcumin supplements (an ingredient of curry) has shown to be very good for the brain
• Coenzyme Q10 in mega doses may slow the progression – try to take 1200mg per day
• Eat broccoli (!)

IF you get a PD diagnosis, the NIH is looking for people with early PD – not on PD medication yet. Whatever the diagnosis – do NOT let doctors start you on pd medications until you think about clinical trials. There are trials going on right now for substances that may be neuroprotective. (I have participated in 5 trials so far…)


www.pdtrials.org
www.clinicaltrials.gov

here is a bulletin board for people with pd –http://neurotalk.psychcentral.com/forumdisplay.php?f=34

new website
 

Hope that this new website is helpful to others:

www.pdplan4life.com/

Nnz-2591
 

Greetings,

Would anyone know where/how we could become involved in trials with NNZ-2591, assuming it is not available by Rx?

Thanks

Alysia

Nnz-2591
 

New Zealand?

I couldn't find any listing of an on-going clinical trial.

====================


Neuren Pharmaceuticals Limited Selects New Compound Targeted For The Oral Treatment Of Parkinson's And Related Neurological Diseases
8/2/2006 11:56:26 AM


SYDNEY, Australia, Aug. 2 /PRNewswire-FirstCall/ -- Neuren Pharmaceuticals announces a new lead candidate, NNZ-2591, from its diketopiperazine (DKP) family, which has shown efficacy in a preclinical model of Parkinson's disease (PD) and in other animal models of brain injury. This is now Neuren's third lead candidate, after Glypromate(R) and NNZ-2566, which are both currently in human trials.

Importantly in the Parkinson's disease model, NNZ-2591 was administered after onset of Parkinsonian symptoms and the beneficial effect in the behavioural tests remained for weeks after the cessation of drug treatment. This suggests the compound produced a long-term benefit in this model of the disease, rather than just temporary symptomatic relief.

NNZ-2591 did not show any liability for drug-drug interactions or any safety concerns following wide screening. The compound did not display any adverse or unwanted pharmacological effects when orally administered to rats at doses over 15 times higher than the effective dose for neuroprotection. In addition, in an experimental model of stroke, NNZ-2591 has also been shown to reduce brain damage when given orally, an important feature for chronic neurodegenerative diseases where treatment is usually prolonged.

These observations have lead to the selection of oral NNZ-2591 as a lead candidate to treat chronic neurological disorders, such as Parkinson's disease and other neurological diseases, such as Alzheimer's disease. NNZ-2591 is now in manufacturing scale-up as a precursor to formal toxicology.

Dr Mike Bickerdike, Head of Preclinical Development, said: "This is a new molecule from our research pipeline and its progression to lead candidate status broadens Neuren's development portfolio. Along with the oral NNZ-2566 program announced recently, we're now able to target chronic conditions, such as Parkinson's disease and Alzheimer's disease, with two lead candidates, oral NNZ-2566 and now oral NNZ-2591."

NNZ-2591 is distinct from Neuren's other compounds, Glypromate(R) and NNZ-2566, coming from a different chemical class, and displaying distinct pharmaceutical and pharmacological properties. Glypromate(R) and NNZ-2566 are currently in human clinical trials for acute brain injury, specifically, cognitive impairment and traumatic brain injury respectively.

Mr David Clarke, CEO, said, "This is an exciting step for the Company. NNZ-2591 has all the right characteristics for a very promising candidate and has gone through a rigorous selection process over the last 12 months. NNZ- 2591 will now follow the Company's well-tested drug development programme used for Glypromate(R) and NNZ-2566, both candidates that are currently in human trials. NNZ-2591 however will be targeting a new area of brain disease, with new potential markets."

Parkinson's disease is a progressive, degenerative neurological condition that affects the control of body movements. In addition, up 50% of Parkinson's patients go on to develop some form of dementia. It is estimated that approximately 1-2 people per 1,000 have Parkinson's, with the incidence increasing to one in 100 over the age of 60. In Australia there are approximately 40,000 people with Parkinson's, with one in seven people being diagnosed with Parkinson's before the age of 50 years. Alzheimer's disease has a reported 4.5 million cases a year in the US and an estimated market worth of US$2.5 billion.

The majority of work to date on NNZ-2591 has been funded by a New Enterprise Research Fund grant from the Foundation for Research Science and Technology in New Zealand.

Appendix:

Parkinson's disease data

Rats were assessed for their capacity to employ both forelimbs when walked laterally along a metre length. The onset of Parkinsonism on one side of the brain at week 0 resulted in poor use of one limb at week 2 (resulting in the low percent L/R steps measure shown in the table). One week of daily intraperitoneal treatment with saline (control) did not result in improved use of the affected limb. One week daily treatment with 0.2, 1 or 5 mg/kg NNZ-2591 (week 2 to 3; 35 animals in total) did, however, result in a statistically significant improvement in affected limb use. This effect was maintained throughout the experiment, for at least 8 weeks following cessation of treatment (represented by study week 11). The effect of 5 mg/kg NNZ-2591 is shown in the table below. Similar results have been obtained with NNZ-2591 in this model of Parkinson's disease when the drug is administered directly into the rat brain (20 ng/rat).

Study Percent L/R steps Percent L/R Steps Week Control-treated NNZ-2591-treated (n=9) (n=8) Pre-Parkinson's onset 0 95% 94% Post-Parkinson's development 2 13% 16% Post-Treatment 7 8% 46% Post-Treatment 9 17% 44% Post-Treatment 11 18% 50% Statistical Significance of Drug p < 0.001

Neuroprotective efficacy of oral NNZ-2591 treatment, administered to rats 3 hours after middle-cerebral artery occlusion, employed as an experimental rat model of focal ischemic stroke.

Statistical Infarct Size Percent Protection Significance Saline control (n=12) 88 mm2 - - NNZ-2591 3 mg/kg (n=11) 60 mm2 32% N.S. NNZ-2591 30 mg/kg (n=11) 26 mm2 70% p < 0.01 Pre-clinical safety data details

NNZ-2591 has shown no liability for drug-drug interactions. This has been ascertained by screening for inhibition of human cytochrome P450 liver enzymes responsible for the metabolism of most prescribed drugs.

NNZ-2591 has revealed no safety concerns following a wide ligand binding screen at over 70 receptors and enzymes. This data supports the view that NNZ- 2591 should be devoid of unwanted pharmacological side effects known to result from interaction with these sites.

NNZ-2591 displays no adverse effects or unwanted pharmacological effects when orally administered to rats at doses more than 15 times higher than the effective dose for neuroprotection.

About Neuren Pharmaceuticals

Neuren Pharmaceuticals is a biotechnology company developing novel therapeutics in the fields of neurotherapy and metabolic disorders. The Neuren portfolio consists of six product families, targeting markets with large unmet needs and limited competition. Neuren has several commercial and development partnerships, including with Pfizer, the US Army's Walter Reed Army Institute of Research and Metabolic Pharmaceuticals.

For more information, please visit Neuren's website at http://www.neurenpharma.com.

Contact details Company David Clarke CEO T: 1800 259 181 (Australia) T: +64 9 367 7167 ext 82308 (NZ) M: +64 21 988 052 Media and investor relations Rebecca Piercy Buchan Consulting T: +61 2 9237 2800 M: +61 422 916 422

Neuren Pharmaceuticals
CONTACT: David Clarke, CEO of Neuren Pharmaceuticals, +1800-259-181(Australia), or +64-9-367-7167 ext 82308 (NZ), or +64-21-988-052 (mobile);Media and investor relations - Rebecca Piercy of Buchan Consulting,+61-2-9237-2800, or +61-422-916-422 (mobile)

Web site: http://www.neurenpharma.com/

Daj
 

Dear Jean,
Thank you for sharing your info. I am 69 years old was diagnosed with PD in March of this year and was prescribed carabidioiopa/Levo 25/100. I believe I have had PD for sometime now but things just got really bad and I had several tests done. Since nothing showed up in MRI etc, I was diagnosed w/ PD. Since first visit to dr., tremors have improved as well as my balance. I now swing my arms when walking. I appreciate your input on taking Coenzyme Q10 et al. I did ask the neurosurgeon and he said would not hurt and might help. So I plan to take this product. I have taken earlier to benefit heart since I take Vytorin. I hope things go well with you and I will look forward to hearing from you.

God's Blessing,
Doris

Hello
 

Dear Doris, and Jean,

My 16 year old son currently has tremors and may have rapid onset dystonia parkinsonism. He is currently trying levadopa/carbidopa. As any concern parent I was hungry for information which is abundant. Perhaps this is something you already know since the post is old, but, I thought I would post a reply anyway.

Your search for a neuroprotective agent like coenzyme Q10 is something the NIH exploratory trials in parkinsons has completed a set of Phase II trials on humans. C Q10 and three other compounds were tested. The compound that is going on to a Phase III (1.7k people with confirmed PD) trial is creatine, while they did not find as high a merit in continuing C Q10.

If your doctor hasn't seen these reports you might want to share them with him. You may qualify to be part of the Phase III study of creatine even if you are on levadopa/carbidopa while the Phase II trials were strikely for newly defined PD patients.

http://www.parkinsontrial.ninds.nih.gov/netpd-study.htm

Or if you just want to consider using it yourself under your doctors supervision the same medical grade solution used in the trials is available from Avencia:
http://www.neotine.com/

I was quite encourage to see the level of world wide research and doctors working on solutions for PD.

God Bless,
Jim

And one more thing...
 

Sign up to receive email "Action Alerts' through the Parkinson's Action Network. More details in this web page:

www.pdplan4life.com/advocacy.htm

Jean B :rolleyes:

this one
parkinsons.org.nz has info on drug trail
not sure if its open to outside Australia, New Zealand PwP I think its ended the trail period 2007.

to contributions to "newly diagnosed" thread-thank you
 

Jean, and the rest of you-those were incredibly useful summaries. Jean, I copied and pasted yours and sent to a group of folks newly diagnosed who had turned to me as a resouce. Also sent to some doctors. best, Leonore
Here's my own resource list for newly diagnosed:

First:
This is a really interesting webcast on "Mind, Mood and Non-Motor Symptoms of Parkinson's" from last month, and it touches on depression quite a bit. Worth listening to....

http://event.netbriefings.com/event/...ives/nonmotor/

Next: stay on top of clinical ttrials. PD Clinical trials Home - pdtrials.org

National Parkinson Foundation - YOPN 2008 National Parkinson Foundation - YOPN 2008 annual early onset-PD conference-wonderful. It's a wonderful way for both of you to meet people and attend even separate workshops for caregivers. Every year it's in different city. This year is Atlanta. NPF, who sponsors, is the best PD group, in my opinion, and our NYU/JCC PD partnership is partially funded by NPF..
you'll learn the most from fellow PD . A good site is: National Parkinson Foundation's Discussion Corner Forums (http://www.parkinson.org/NETCOMMUNIT....aspx?&pid=467)

For artistic inspiration, CREATIVE PDF.ORG is a pretty amazing web site, from a huge juried exhibit/performances at gallery by artists, poets, musicians, sculptors, playwrights,etc (.all with PD), at 5 day 2006 World Parkinson's Congress in DC, Scroll through whole site as you find the time, and click on gallery to see incredible art, and read stories/bios. Many artists are from other countries.. FYI. I have a bunch of poems on site if you click on my name..
CLOGNITION at http://www.clognition.org/community.htm. It's a must read-a really educational, and, at times, funny, site about our cognitive issues written by "Parkies"


Collaborative on Health and the Environment : Parkinson's Working Group http://www.healthandenvironment.org/...ups/parkinsons
It's an incredibly important group to hear from, and the PD Working group's leader, Jackie Christensen, is a friend from Minneapolis,, and a dynamic woman in her 40's with PD, who wrote essential book:
Amazon.com: The First Year---Parkinson's Disease: An Essential Guide for the Newly Diagnosed: Jackie Hunt Christensen, ..http://www.amazon.com/First-Year-Par...5471515&sr=8-1

Below, another AMAZING book written by a dear, dear friend in LA, John Ball, who is 62, has PD for 35 years and is still running entire LA Marathon (and who also, with wife, Edna, runs charity for LA Marathon, called TeamParkinson's
Amazon.com: Living Well, Running Hard: Lessons Learned from Living with Parkinson's Disease: John Ball: Books
http://www.amazon.com/Living-Well-Ru...5471636&sr=1-1


A friend likes
Amazon.com: 100 Questions & Answers About Parkinson Disease (100 Questions & Answers about . . .):
http://www.amazon.com/Questions-Answ...5472241&sr=1-1
Abraham Lieberman: Books


Below, a useful web site, and highly recommended by Cyndy, my fellow social worker and also retired friend with 20 years of PD who ran her own conference on PD in '07, on PD and complementary medicine (at BMCC!) , that NYU and my doctor supported (he came and did an introduction and led a workshop)
National Center for Complementary and Alternative Medicine [NCCAM] - nccam.nih.gov Home Page
Cyndy uses western and eastern med's. and approaches, and highly recommends using Whey Protein Glutathione, among other things. You can e-mail her at siege2377@aol.com. She's a great resource and is doing pretty well with all of her various treatments!

Superb e-newsletter about international and national news on Parkinson's out of Seattle is: http://www.nwpf.org/AboutUs.aspx
Political advocacy work gets your dopamine flowing. There's a lot patients can do for PAN (see link below), such as writing letters to editors, sending out e-mail legislative alerts to everyone they know to contact their elected representative when an important vote is coming up.
http://www.parkinsonsaction.org


National organizations:
PDF - Parkinson's Disease Foundation, Inc. | Home

Michael J Fox Foundation:
http://michaeljfox.org/
Mohammed Ali Foundation: http://www.maprc.com/home/default.aspx

New & Confused
 

I'm newly diagnosed & and want to SCREAM.:eek: