To the newly diagnosed
 

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

--------------
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:

Have at it
 

Both a rational response and good therapy in my opinion. Might kick a little furniture around, too. :D

Seriously, though, there are far worse things to have. In 2000, I went to a neuro convinced that I had a brain tumor.

Do try to let the negative energy out in some way. That's one of the things that gotus into this exclusive club, anyway. In between these episodes, this is a good place to hang out. Good people and lots of support.

My diagnosis is about 1-1/2 years old, and I suspect that I should think it is tragic, but I don't - maybe the anti-depressants are interfering with my ability to feel strong emotion. Yet though my right hand shakes like a leaf, I have problems taking notes at a business meeting and transcribing a phone number can require the effort it took Melville to write "Moby ****", and there are days that I think I need to use my arms to lift my legs up the subway station steps, I still haven't gotten it in my head that I have a condition that will prevent me from doing what I plan to do with my life. I've gotten no worse since my diagnosis. I've said nothing at work. I wish I could scream, because I am under the distinct impression that my inability to do so is more of a sickness than my PD. Kuaila, other than the label put on it, if you're under good treatment, what is making you so angry/frustrated?

Scream away
 

Kuaila,

Recently an old high school friend wrote to me about my "being allowed to suffer for the instruction of us all." He is very religious and I know his intentions were good. But it led to my screaming (alone at home) that I had enough suffering in my life thank you and I wished it would end.

I believe sometimes you need to scream and should scream (in an appropriate place :rolleyes:) I have done this and then I go back to being as positive as I can be.

You are not alone. We are sorry you have joined the club that no one wanted to be a part of.

Good luck to you.

Jean

I have a probable diagnosis but
 

the neurologist still wants me on sinemet for two weeks for diagnostic purposes....then if it proves true ...on something lighter since my
symptoms are mild....anyway i had a horrible onset of meralgia paresthetica that pushed back my start date with sinemet since I don't want to mix it
with all the pain medication I'm on....the pain is receding somewhat with
exercise and epidurals

Any Help Would be Appreciated
 

Hello, I am writing this in the hope someone could point me in the right direction.

My wife (49) has been experiencing intermittant at rest tremors in her left leg since dec 2009. Initially her primary care physician said this was possibly stress related etc. This month she experienced pain in her left ankle that would get better over night but become worse during the day. In addition to this her tremor became more pronounced. Her primary care physician recommended seeing a neurologist.

So... we made an appt with a neurologist at a neurology group suggested by her primary care physician. The neurologist performed various in office tests and prescribed blood work and an MRI and a follow up visit in 6 weeks. All of the tests came back normal and the MRI was clear with no tumors etc. The neurologist says he feels she has early stage Parkinson's and has not given us any information or recommendations other than we should see him in six weeks.

I've read countless websites articles etc about PD, but I'm at a loss as to what we should do for the next six weeks while we wait for the next appt.

movement disorder specialist
 

jmeyer -- if your neurologist was not a Movement Disorder Specialist -- then find one and make an appointment asap. This is a neurologist who specializes in Parkinson's and Parkinson's-like illnesses. They are the best around.

for my initial diagnosis - the neurologist did the same thing - an mri to see if I had a brain tumor - when I did not - then the PD diagnosis.

But I switched to an MDS - she knows her stuff. It's best to see an expert.

Sorry to hear your wife joined the club no one wants to join.... :grouphug:

Good luck.

Jean, thank you for the quick response.This has been quite a shock to us as my wife has always been healthy and very active. Being told matter of factly to come back in six weeks without any other guidance was also a shock. That was a week ago and I have been researching PD ever since. The amount of information available is staggering and it is difficult to sort through it all.

We will begin to look for an MDS in our area. We are in rural NW NJ but very close to NYC and other major hospitals in NJ.

Have you or anyone you know had any success with supplements for treating or reducing symptoms? My wife is quite active and is interested in going the "natural" route for as long as possible before going on any medication.

Hello, I suspect that my husband is about to be diagnosed with PD. He has an MRI this week and then we will go from there. I thought that he had frontotemporal dementia until he started having tremors in both hands and legs. He has difficulty standing in one place and balance is a concern. He can't sleep at night and has been clinically depressed for two years. Has anyone else had personality changes like noted in frontotemporal dementia but had it turn out to be PD?

e-mail to Michael J Fox
 

Hi---Do you have an e-mail address that would allow me to send an e-mail that would get to Michael J fox. I just want to let him know how much I admire and appreciate all his work he is doing and let him know how much he has helped me to continue fighting my many battles with other neurological diseases. Thank you for any info you can give me. :confused: hutch

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…)


I have a brother that has had parkinsons for, I'm guessing 10 years. He's tried a lot of different things and was on several or many different drugs. He was on the one that begins with an "L" that almost everyone ends up being on. Anyway, I gave him a book by a doctor in Florida who was having real success using intravenous glutathione. It took him over a year and one half years to go, but he finally did. He is now doing the intravenous glutathione and has remarkably been able to go off of the harsh drugs he was on. I know he's still using some drugs, but the glutathione actually works!!! It is not a gimmick and it is so definitely not a placebo affect. Some insurance companies are starting to actually cover it. I'm just SICK that the major parinson's associations are not aware of this and promoting it, etc. The last I heard, his neurologist thinks he has halted the parkinsons, but I find that really hard to believe and am not suggesting at all that it did. (it may have, but I honestly don't know and am not at all claiming that it did. the jury is still out) BUT I am saying unequivically that the glutathione has improved his life dramatically and he has difinitely gotten off the harshest drugs. I wish I had more exact info to write here so I could give more intelligent information. I am having surgery in a couple of weeks and will be off work for about 8 weeks. It will be my mission to get more exact information and to then call, email, and send faxes to these associations and find out why, why, why, they are not aware of and looking into the glutathione. I was rudely brushed off a couple of years ago when I called one association to seek info on the glutathione. I'm livid that they blew me off because I then slacked off on pushing my brother to find out about it, etc. He could have been on this quite a while ago. Anyway, I wanted to really try and get people to be aware of it and PLEASE check it out because it is real, even tho it sounds too good to be true. I love my brother dearly and it's been crushing me to see him going thru what he has been going through and watching my mother having to watch her son go through this. I would NEVER write what I have written if I didn't know and see for myself that it really does work.

am I sick
 

Friday I got a diagnoses of early onset parkinson, just my family physcian, he stated it on my sleep patterns, constant pain, tingling and numbness in my hands feet and other areas of skin, and a slight shaking in my left hand, and jerky movements when he moved my arms. Plus as he called the face mask.
He started me on Mirapex 1mg a day. and wants to see me again in 10 days to see how the drug is working, and said if this drug helps then it is almost a sure sign it is parkinsons.
Kinda scary

Hi Kathy - thanks for this - I don't know if our Canadian Drs know about this up here or not - the Glutathione - I will do more research on this for my sister - she was diagnosed 5 years ago as having PD and started taking the Prolopa (combo of Levodopa + Benserazide) ever since. We think the fact she took an overdosage of thyroid meds for 12 years is what started all of this for her. Now she has come off of both and needs 24/7 care now. As a family we are scrambling to figure out what's what now. We also totally believe in doing it alternatively, and no more drugs. I am also beginning to believe that my sister's history of having a heavy metal toxicity buildup in her body has something to do with all of this too. Am putting together the pieces as well trying to figure out our next steps here for her. Right now the family is trying their best to look after all of Tamra's needs, but they are quickly fading energy-wise and emotionally. There has to be some natural detox centre we can take her to for the physical labour help. Thanks for your info on Glutathione.

Laurie

grasping for data
 

My wife was recently diagnosed with PD.
We have been married for 25 years.
Come to think of it, I can not remember a time when her sense of smell was working. She's been using antidepressants (ADs) for 12 yrs; effexor, mostly.
Lots of people - more and more each day - have been using ADs. Somewhere, I managed to see a page where it was stated that PD incidence has been climbing at an alarmingly high rate; then, I lost the page. I can not help but think that AD use, prior to PD diagnosis, without insight into the underlying emotional trauma (blocked by AD use, without therapy) might result in somaticization, ie a conversion disorder. Chronically, that could be one pathway to development of PD. I am sure there are others. I would be interested in studying that a bit.

So.......I now ask for a very big favor please.

1. First of all, please forgive me if I am threadbusting. This is my first post on NTSG, although I have been lurking for several weeks. If there is a better thread, just redirect me.

2.I asked them if they could please direct me to a source of data on the increasing incidence of PD. Surprisingly hard to find!

This is what they sent me:

[41] American Journal of Epidemiology [2003] 157 (11) : 1015-1022 (S.K.Van Den Eeden, C.M.Tanner, A.L.Bernstein, R.D.Fross, A. Leimpeter, D.A.Bloch, L.M.Nelson)

[42] American Journal of Epidemiology [1995] 142 (8) : 820-827 (R.Mayeux, K.Marder, L.J.Cote, J.Denaro, N.Hemenegildo, H.Mejida, M.X.Tang, R.Lantigua, D.Wilder, B.Gurland, et al)

[62] The Canadian Journal of Neurological Sciences [1984] 11 (1 Suppl.) : 156-159 (A.H.Rajput)

Here is the question: Would you please help me to obtain these articles?
I have done some physiological research, so I think I will be able to understand them.

Thanks.

Great working on this challenging condition with you all.

David

There's been some research linking caffeine with slower progression of Parkinson's. My Dr. recommended I start getting a moderate amount of caffeine daily.

Hello
 

Hey Guy's - I'm a total newbie to everything and feel so overwhelmed. I'm a 40 year old male (if you couldn't tell from my avatar) and was diagnosed for a 2nd time with PD two weeks ago. They put me on mirapex 3 times a day (1 MG each) and Primidone. I've had tremors for a long time but first it was RLS, then Essential Tremors, and now finally Parkinson's. I've been for a DAT scan as well as numerous MRI's and I am sorry to ramble....

I guess, I am NOT ready to handle this. It's scary and now the tremors in my right hand are constant. I feel like everyone is staring at me, and my kid's are starting to see things they have never seen.

Thanks for having me here, I promise, I'll pull it together.

New to Parkinson forum
 

I am new to the forum and figuring out how to post a message.

I was diagnosed with PD in Jan of 2013, but had symptoms long before then.
Using only Sinemet, four times a day. Tried Azilect, but my BP went to high levels and I stopped. My Neurologist is not a movement specialist. I live near El Paso, Texas.

Very Helpful
 

[QUOTE=jeanb;106005]I recently sent this email to someone newly diagnosed with PD.

--------------
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…)


I take all of these and find them helpful

help?
 

hi there, so the past 7 months have been torture. pd is in my family, dad has essential tremors but they didnt hinder the amount of disability i have been in starting back in 2012, and then popping up again and not going away since july 2014.

it all started with a ruptured ovarian cyst that got me sick for 10 days but i have a high tolerance for pain as i grew up and worked in classical arts and there you are taught never to complain about anything ha ha. so eventually i go to the ER they find some free fluid, the ruptured cyst, acute uti with cystitis, i get a pelvic infection and couldn't leave my bed for almost 2 months. the bf was a god send taking care of me.

i got sent to a gyn oncologist by the er, he said wait out about 6 weeks and i should start to get better. as soon as i started to get better, i wake up in scorching pain at 6 am one day barely able to breath or move, my friend from finland was visiting sleeping in the same room and i was looking like i was about to die and obv feeling like it too, i barely made it to the bathroom gasping for air and then ****** out blood. i have no idea to this day why that happened and none of my doctors seem to have an explanation other than i might have been dehydrated thus possible kidney stone. gyn onc didn't really go about the office visit well after telling me to come in to save me another ER trip.

I get referred by bff's mom to her gyn, very well sought after in the area with long term patients. he wasn't supposed to see me as i am 24 and typically doesn't take patients under 35 but did due to my circumstances. they found a hemorrhaging cyst on the other side this time, and referred me to a surgeon for a much suspected inguinal hernia.

i get to the surgeon long story short had bilateral inguinal hernias, they were repaired laparoscopically at the end of june. they told me the first month is typically when you have the worst pain, after that recovery gets much better, faster, and moving around is easier. while my low back pain ceased immediately after the surgery, the months went by and i was not better. my legs were shaking up stairs, my stomach began to feel within the past month or so like i reherniated myself, i got tremors mainly in the R hand, but then spread to the left arm and both sides are and legs as well as my head and neck ( head and neck usually only when im super stressed or emotional or tired or missing meds etc).

in 2012 i was dx w/ bilateral ulnar nerve entrapments on both elbows, loose ligaments, a tfcc tear on the right wrist, mild carpal tunnel, bilateral cubital tunnel. i had ulnar nerve entrapment release surgery on the right side with suspected focal dystonia. i couldn't use my right arm for three months before i had the surgery. i had tremors before surgery, and after i would get them occasionally if i had played my instrument too much, or overused my arms. i also couldn't button anything before surgery, and immediately after i could button things it was like magic.

but starting in late march when i initially got sick and misdiagnosed with PID, after 11 ultrasounds, bilateral unexpected hernia surgery, getting put on birth control to shrink the cysts and prevent another painful rupture, the following specialists:
2 gyns,
gyn oncologist,
internal med pcp,
gen. surgeon,
hand specialist/surgeon,
old neurologist,
current neurologist/mds,
rheumatologist,
current neurologist/mds's senior who only specializes in mds,
ongoing shrink,

the following tests since end of july:
-new eeg
=myoclonic* new, uber light sensitive per usual im epileptic,
-new mri w. w/o contrast
=all normal
-new emg and nerve conduction studies bilateral on arms and up to neck,
= previous ulnar nerve surgery didn't do anything (obviously bc i cant button crap or do normal things more so on the R but also on L on bad days too)
= everything abnormal out of range for everything bilaterally
-blood tests to check medication levels
= all in normal ranges,
-10 vials drawn at rheum.'s + xrays
= Vit D2 (mine was 18) & B12 deficient
-now on 50,000 IU D2 rx per week,
-1000 mcg/day B12,
=mild osteopenia in hands,
=confirmed tremors in upper extremities and knees
-trial of primidone for initial dx of essential tremors
= didnt work increasingly more depressed as the days went on
-decreased adhd med
= no difference in tremors they got worse
-senior mds impromptu comes into apt bc neuro wanted me to see him and get his opinion,
=finds cogwheel both arms,
=dystonias,
=confirmed ET in arms and legs
= stop the primidone,
=have me get a 24 hr urine collection for copper
=ceruloplasmin blood test to rule out wilson's disease,
=started a trial of carbidopa-levodopa this past wednesday.

for the first time in months i have been able to move around a little more easily and the nausea is ceasing. I have a DatScan first week of October, neuro explained to me that CLpa is used to treat symptoms of PD even if it isn't necessarily PD itself.

I still don't have a clear cut diagnosis. but the CLdpa is working in reducing symptoms, D2 & B12 supplements, walking, friends, and reiki are starting to help.

Has this long grueling testing process happened to anyone else? does anyone have any insight? I currently live alone and I am combating some previous psych. issues-my social support is getting stronger, but there are so many people my age that don't really understand flaking out on me is not ok because their help with chopping up food so i can eat is how i can eat and if they cant be honest and tell me they cant show up i suffer and i suffer a loooooooot. anyone with some insight please help.

i just want to have some sort of response if they put me on this hefty med because i may have PD- my symptoms have crippled me off of it and even on it they are not completely gone. I am significantly more happy because i can move and getting out of bed isn't as painful but still-i use radical acceptance everytime pain tries to get the best of me. I never thought this would happen to me, im accepting never producing or playing my instrument again i cannot hold my bow, my doctors know this. thank you in advance i know this is a long and complex post. i am glad you are here and grateful for any response you can lend or advice.

new but not diagnosed
 

I was tested for everything under the sun within last 3 year's and we have ruled out everything. I can't tell if my doc thinks I am too young for a diagnosis, since symptoms aren't bad...mild for most part. Or if he thinks I am nuts. My dad has PD, his dad did to. I really would just like physical therapy prescribed for now. Wonder if getting a diagnosis worth it yet?