An Online Parkinson's Support Group
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Sunday, March 22, 2009

Spinal Stimulation 2


You may have read this somewhere else by now, because dozens of news reports are on the internet, and on the TV. The discovery is that Spinal Cord Stimulation works, and that it works better then deep brain stimulation! It seems it is simpler to do and the results are excellent. Rodents tested moved 26 times faster when the electrical treatment was turned on. And they did so in an average of 2.5 seconds!
Of course you and I are not rodents. Testing will have to continue. One of the things that are not clear at the moment is if the results are long lasting or not. Will you get the same dramatic results every time you turn it on?
Why don't you google the news by entering SPINAL CORD STIMULATION and get informed.
Ted Decock at 12:56 PM
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Friday, March 20, 2009

Spinal Cord Stimulation

Rodents with Parkinson's-like symptoms walked and moved normally again after their spinal cords were stimulated with high frequency electrical currents, called dorsal column stimulation,  a new study shows. 

Patients with Parkinson's who are no longer responding well to medications sometimes turn to deep brain stimulation, in which electrodes are placed deep into areas of the brain and programmed to disrupt neurons that are firing incorrectly. In many patients, blocking the abnormal nerve signals helps alleviate some of the movement problems.

Stimulating the spinal cord could be an improvement over deep brain stimulation because it's considered semi-invasive and the electrodes are easier to implant.

If it works in humans, it would certainly a cheaper and more accessable treatment. Read more HERE.

Ted Decock at 7:57 PM
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OPTOGENETICS


DBS (deep brain stimulation) is done by bringing an electric signal to the part of the brain that is misfiring and causing Parkinson symptoms. 
A new field of bio science, called Optogenetics, found that this can also be done with light. Neurons can be made sensitive to light, blue causes exitement, and yelllow calms the neurons to the extend that Parkinsons symptoms disappear.
The step taken are too technical for me, but I like the results. All the tests were effective in rodents, but it is really too soon to say if it will be working satisfactorily in humans. 
Ready for more details? CLICK HERE
Ted Decock at 5:30 PM
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Monday, March 2, 2009

Stem Cell Breakthrough

Scientists have found a way to make an almost limitless supply of stem cells that could safely be used in patients while avoiding the ethical dilemma of destroying embryos.
Stem cells have the potential to be turned into any tissue in the body, an ability that has led researchers to believe they could be used to make "spare parts" to replace diseased and damaged organs and treat conditions as diverse as Parkinson's disease, diabetes and spinal cord injury
Tests on stem cells made from human and mouse cells showed they behaved in the same as embryonic stem cells. Because these stem cells come from the patients own skin there is no controversy associated with embryonic stem cells. Also important, the fact that there is no immune rejection. 
Here again is a ray of hope for Parkinson's sufferers!
Ted Decock at 8:26 AM
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Friday, February 20, 2009

Madoff


It seems that the alleged fraud of Mr. Madoff is being felt in all levels of society, including the labs where research takes place into a cure for Parkinson's.
PITTSBURGH—The University of Pittsburgh is receiving $75,000 in emergency funds for Parkinson's disease research in the wake of losses due to the Bernard Madoff financial scandal.
The Parkinson's Disease Foundation is providing the money for the lab at Pitt's School of Medicine. Researchers there are trying to determine if Parkinson's medications can also be used to improve patients' gastrointestinal condition.
The lab received about $750,000 a year for Parkinson's research from the Florida-based Picower Foundation.
The foundation stopped making grants in December because its endowment was managed by Madoff. Madoff allegedly ran a $50 billion pyramid scheme using investment funds he managed.

Information from: Pittsburgh Post-Gazette, http://www.post-gazette.com
Ted Decock at 7:30 PM
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Thursday, February 12, 2009

My Life Today


MY LIFE WITH PARKINSON'S
by Ted Decock
February 12, 2009

I wake up and the alarm tells me that it is 10 minutes to 5, am. Before I can do anything else my right arm begins to shake, then my legs, and for a brief moment it seems like all my internal organs shake. Then an overwhelming feeling of depression floods through me. I have had that before frequently, and I know how I must deal with that: - acknowledge the feeling and make the decision not to act on it.

You have to stay in control. The daily struggle has begun. I get up to get my first medication of the day. I have problems with my balance, and walk like a drunk, little steps and holding on to the walls. The neurologist prescribed one sinemet tablet four times a day, but that gives me too many "off" periods, so I break the pills in half and take them pretty well every three hours. Except when I sleep, with the result that my worst period is upon waking up.

By six am I begin to feel better. A dramatic change! During the rest of the morning I cannot stay awake, but around eleven am life begins to become close to normal. I can drive the car, reminding myself that I have to drive slow and be extra careful. I cannot walk very far. After a few minutes I get an overwhelming sense of fatigue and muscle weakness. I have to go to small stores to buy what I need. The North American Superstores and Big Box stores are out of the question.

The doctor says I need a "caregiver". Yes, I can see that, at least in some areas. Trudy, my faithful wife of 48 years gets to play that role. It is hard on her too, Parkinson's Disease is something that effects the whole family. It can be adding to your financial pressures as well.

Spiritually speaking it is a struggle as well, same as with other major diseases. Sickness does not fit very well in my (christian) religion. I believe Christ is able to heal and restore. He introduced himself by healing the sick as part of the ministry. For the time being the two ideas, being sick and faith in healing, have to be compartmentalized. Later on we may understand better and come up with a unifying theory. In the meantime there is a tremendous peace, and that is most valuable for a person in my position

Ted Decock at 7:47 AM
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Monday, February 9, 2009

DBS testimonial

Mr John Lee (not his real name, main image) appears an unlikely candidate for Parkinson's. The amiable and talkative 68-year-old has a strong handshake and a steady stride which do not betray the condition he has lived with for the past 15 years.

Once the general manager of a group of engineering companies, Mr Lee began experiencing depression and weakness in his hands in 1993. He was diagnosed with Parkinson's disease the following year, when he was 53.

Although he had heard of the illness prior to the diagnosis, he was not fully aware of the repercussions it would have on his life.

He began to fully grasp the gravity of his condition when he no longer responded well to medication and the tremors worsened over a decade. His condition deteriorated to the point where he would uncontrollably slap his hand against his thigh all day.

He could not read the newspapers or sign documents due to the severity of his tremors. The disease also forced him into early retirement at the age of 56.

Despite two aborted attempts due to malfunctioning technology and a suspected viral infection, Mr Lee decided to undergo Activa Deep Brain Stimulation therapy in May last year.

His wife and two children, now aged 36 and 38, were immensely supportive, particularly in the lead up to the surgery.

Religion also helped. 'I was fortunate to have some religious beliefs and that helped me tremendously,' he said.

It took only one week to recover from the DBS surgery and Mr Lee has since regained his motor movements. He now needs only one quarter of the medicine he used to take. He also no longer needs physiotherapy and he cycles or walks for an hour every day to remain active.

Though Mr Lee is in much better shape now, he is unable to drive anymore so he relies on his wife to chauffeur him. He has also hired a maid who accompanies him everywhere. This is a preventative measure, in case he falls.

He said: 'The worst thing that can happen is for me to fall and hit my head because it can cause a stroke.'

His quality of life has improved significantly since the surgery and he recommends the surgery for those eligible.

'Now I can spend much more time reading the papers and doing the things I like', he said.

This story was first published in Mind Your Body, The Straits Times, on Feb 5, 2009.

Ted Decock at 10:18 PM
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Tuesday, February 3, 2009

SAFINAMIDE

The German drug manufacturer MERCK announces that they have success with a new drug called SAFINAMIDE. And, you might ask, what is this success? Well. in combination with regular Levodopa the benefit in motor control is extended by half an hour. Does not seem like much, does it. But a bigger benefit apparently is that the shares went up by 0.5%. Yup, that is how it works!
Seriously, we can be thankful for every effort drug companies put forth to ease the suffering of those who deal with Parkinson's.
Read more   H E R E
Ted Decock at 5:47 PM
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Sunday, February 1, 2009

GOD

THERE PROBABLY IS A GOD!

As I see it, there are three questions:
* Does God Exist?
* Is He involved in human affairs?
* Is there Life after death?

The fact that LIFE exists is already sufficient evidence that there is a God. The more you study the interaction of the various functions and systems, the more you must admit that there is design. And where there is design, there must be a designer. Where there is art, there has to be an artist. Random happenings do not produce anything but chaos, it is that simple. So mister atheist what are you afraid of? Some-one to answer to when it is all over?

It may seem sometimes that God has abandoned His creation, and that he is not reachable by us. Then all of a sudden you come across an event that can not be anything else but the finger of God. A person with a fatal illness is suddenly well, or a wayward child is suddenly changed and comes home. Many"miracles" come after intensive prayer, and a sincere seeking after God.

Most people believe in "Life after Death" and there is now a fair bit of literature confirming this. I have read a number of scientific studies that acknowledge this. God, to be God, must operate on a multi dimensional level. We cannot understand anything beyond three dimensions, or if you are smart, four dimensions. One example is the observations by astronauts of things that do not fit in a three dimensional world. 

If you do not believe in God you miss out on a wonderful life full of Peace and Joy. The Bus advertising, "There probably is no God", does not mention that. They have to tell each other to enjoy Life. We Christians already do. I find it a bit unusual anyway, to Announce that on the side of a bus! What do you think?


Ted Decock at 7:33 PM
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Friday, January 30, 2009

Research continues in the battle against Parkinson's diease.  
In Seoul, South Korea, the cloning of puppies using stem cells derived from fat tissue, suggests there may be a possibility for a Parkingson's cure.
In Ausrtia scientists are already testing a vaccine that would prevent Parkinson's as well similar diseases.
In Florida they were successful in developing a drug that actually fights the development of Parkinson's.
In Ciccinnati they discovered molecues that appear to be altered by the disease. This is important because it will become a new target in the treatment of Parkinson's.
From London, England the news that they found new treatment for balance problems associated with Parkinson's.
The above is just today's news. It is so encouraging that scientists all over the world are dedicated to find a cure for you!!
Ted Decock at 7:03 AM
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Tuesday, January 20, 2009

a GENE approach


Scientists at the Université de Montréal have discovered a gene that is responsible for the aging of neurons in the brain and central nervous system. This finding could lead to new therapies for Alzheimer's disease or Parkinson's.  

The gene, called Bmi1, prevents the activation of certain other brain functions, and also prevents the accumulation of free-radicals in the brain, which can lead to diseases such as Alzheimer's and Parkinson's, according to research authors. Without the gene, the aging process of the brain and the eye was dramatically accelerated in laboratory mice, the research shows. 
Reported Here
Ted Decock at 6:54 PM
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Thursday, January 15, 2009

NOTRIPTYLINE


Up to 50% of sufferers of Parkinson's suffer from depression. It can be a serious problem. Routinely, doctors presribe antidepressants that work on serentonin only.
It now appears that an older medication is more effective for the type of depression that accompanies Parkinson's.
Bring back the NOTRIPTYLINE.
 Notriptyline works as much as 5 times more effective then others. This appears from a study done recently. 
The study found that the people who took nortriptyline were nearly five times more likely to see improvement in depression symptoms when compared with the people who took paroxetine CR(controlled release).
Read more   HERE
Ted Decock at 6:36 PM
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Tuesday, January 13, 2009

BIIB-014


Biogen Idec had some encouraging word for the treatment of Parkinson’s disease this morning. They developed a drug called BIIB-014, which showed some success in the treatment of Parkinson's.

Researchers have tried lots of different approaches to treating Parkinson’s, like gene therapies, cell-replacement therapies, and deep-brain stimulation, with little to show for it. The Biogen candidate, an oral pill, is designed to block a specific receptor on brain cells called A2a. Blocking this target is supposed to help restore normal brain circuitry, the company says. Kenilworth, NJ-based Schering-Plough, and Swiss drug giant Roche are also pursuing drugs designed to hit the same target on cells.
Read more HERE
Ted Decock at 10:33 PM
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Sunday, January 11, 2009

Clioquinol


Clioquinol is a discontinued drug that is now found to be useful in a new application. In animal tests it appeared to have positive results in the treatment of neurological diseases, including Parkinson's. Because of possible serious side effects more research is warranted.
A startling revelation came to fore when it was found that it could reverse the progression of Alzheimer's, Parkinson's and Huntington's diseases. Scientists have various explanations as to how a single medicine could reverse the progress of three unrelated neurodegenerative disorders.
Ted Decock at 9:15 AM
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Wednesday, January 7, 2009

STEM CELLS answers

For those who still have questions about Stem Cells, please read the FOLLOWING LINK. 

It informs you when research on stem cells started, and how far they have come. Also of interest are the ethical questions surrounding the subject. That, and much more, and easy to read!!
Ted Decock at 7:44 PM
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Tuesday, January 6, 2009

News Video

If you were watching CTV News, you may have seen this:
Ted Decock at 10:33 PM
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Monday, January 5, 2009

LINKS

When you have been diagnosed to have Parkinson's Disease, you are plunged into a different world. At least that is my experience.  My immediate re-action was: I have to find people who experience the same things I feel! That means that I welcome YOUR input, and it also means that I would seek out websites on this subject. One great website is:
http://www.parkinsonsforum.org/
Check it out! 
Ted Decock at 1:58 PM
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Saturday, January 3, 2009

TENNIS BALL?


YES, a tennis Ball, to restore dexterity to your hands.

Patients are encouraged to roll the tennis balls in the palm of their hands to keep fingers supple and to roll them along the table to stretch out their fingers and help increase manual dexterity and hand-eye co-ordination.
Simple, and effective according to this news article
Ted Decock at 6:18 PM
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Thursday, January 1, 2009

STEM CELL 101


Stem cells are holding a promise for a cure of a number of diseases, right? Well there  are still a few problems.
Embryonic stem cells to date have had limited success in animal tests and has yet to produce a single viable treatment in humans. For that matter, they have not yet been safe enough to enter into any human clinical trials. One difficulty is because of their pluripotency, (they can be grown in the lab and become any type of cell, and they have the potential to divide an unlimited number of times), they become disorganized and produce teratomas (tumors) that lead to cancer. Also because embryonic stem cells come from another human, there is the risk of immune rejection.
The above is a quote from an article by Bernard Moon, Read the entire article by clicking HERE
Ted Decock at 5:55 PM
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Wednesday, December 31, 2008

DBS


Deep Brain Stimulation  is available for those with advanced Parkinson's Disease. It is, in general, not used for earlier stages. For those who have this operation it can make a dramatic difference. Read the story of 73 year old Ray McClusky,
Ted Decock at 6:26 PM
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HAPPY NEW YEAR

Ted Decock at 2:46 PM
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Tuesday, December 30, 2008

Pill Alarms


In order to avoid "on and off" cycles, when taking my medication for Parkinson's, I break the prescribed tablets in half an take them twice as often. I feel a lot better not having to deal with "off" periods. Now there is an other problem: how do I remember to take these pills on time. I have to go shopping for a timer......or wait a minute!! I have one in my pocket already, in the from of a cellphone. Most cell phones now a days let you program in a number of alarms.
So there, another problem solved!! 
Ted Decock at 10:19 PM
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Monday, December 29, 2008

PIG CELLS


Parkinson's implant offers new promise
 

Tiny capsules implanted in the brain have been developed to reverse the effects of Parkinson's disease.

The capsules contain pig cells that produce chemicals and proteins to help repair damaged brain tissue.Early results suggest the treatment could halt the tremors and stiffness that blight Parkinson's sufferers. 

Parkinson's is caused by the loss of nerve cells in the brain that control muscle movement.

Early signs often include tremor in one hand or arm when the body is resting, as well as muscle stiffness.

The treatment, being developed by Australian firm Living Cell Technologies, uses special cells that produce cerebrospinal fluid that appear to patch up the damaged part of the brain in Parkinson's patients.

Ted Decock at 6:37 PM
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Saturday, December 13, 2008

Parkinson’s Psychosis



While Parkinson's is recognized for its profound effects on movement, up to 40 percent of Parkinson’s disease patients also develop changes in thought, behavior and judgment.

“While the physical manifestations of Parkinson’s disease are difficult to deal with, the changes in thought, behavior and judgment strain the bonds between patients and their caregivers and families,” said Dr. Bernard Ravina, Director of the Movement and Inherited Neurological Disorders Unit at the University of Rochester in New York."

The following page would be of interest especially to caregivers:

http://www.redorbit.com/news/health/1610222/parkinsons_disease_can_affect_more_than_just_your_body/

Ted Decock at 2:02 PM
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Thursday, December 11, 2008

Speech Therapy



WHAT IS THIS?

My grandmother had one. I think it is called a Hearing Trumpet, obviously the fore runner of the hearing aids of now-a -days.

When you suffer from Parkinson's you may wish everybody had one of those! What you do not realize is that it is YOU who is mumbling.

You can hear them but they cannot hear you. Pathologists say it's is common obstacle for Parkinson’s patients. It's called - disarthrea. A patient's speech can become softer and harder to understand. There is therapy available for this, if you are lucky enough to have such a clinic nearby, and if you can wait your turn on the waiting list. And, in many cases, if you have the insurance to cover it.

Read: http://your4state.com/content/fulltext/?cid=43651

Ted Decock at 4:35 PM
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Thursday, December 4, 2008

Dopamine and Diet


Eggs, Meat and Milk are High protein foods. This food does not go well together with the absorbtion of Dopamine.
A research team in Italy reports that lowering the protein content in a patient's diet can improve levodopa therapy and reduce off periods.
While eating the low-protein diet, 18 patients recorded fewer off periods and averaged about 100 fewer minutes of off time per day than while on the balanced diet. Twelve patients reported no change in levodopa dosage while on the low-protein diet, but six patients required an average of 9 percent less levodopa in their midday dose while eating less protein.
One specialist puts it this way: The protein competes with dopamine for the same receptors.
Ted Decock at 7:45 PM
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Wednesday, December 3, 2008

WARNING!


I noticed a lot of warnings on the internet with regard to stem cell treatments and Deep Brain surgery in foreign countries,
Most of them advertise on the internet, but they may be just after your money. To quote the Associated Press: "I think these Web sites are dangerous," said Daley, a Boston stem cell researcher. "They overpromise effectiveness and safety of the therapy and they completely underestimate and underinform about risks. ... (Such) overhyped marketing directly to the patient is putting patients at risk of financial exploitation at the very least, and physical danger at the at the worst.
Canadian researchers analyzed 19 Web sites unearthed by a regular Google search, all of which peddled expensive stem cell therapies for everything from stroke to allergies. All located in other countries, China, Mexico, Russia..... And the cost? One patient paid $21,500, plus expenses.
My own neurologist has a patient who had Deep Brain Surgery, in China and is now disabled because of brain hemorrhage.
Be Warned!
Ted Decock at 8:04 PM
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MagnetoEncephalography (MEG)

Have you heard of the MEG machine? MagnetoEncephalography (MEG)
It is a very expensive machine introduced recently to diagnose brainwaves by tracing tiny magnetic signals deep inside the brain.
From what I understand signals coming in from the senses are analysed in the brain and translated into an experience. In order to do this, sensual information is looped and compared with other signals, and then interpreted.
Suppose you hear a loud bang, you loop this sound in your memory for a while and compare it with other signals such as what you have seen, or smelled. With neurological illness such as Parkinson's, they suspect, something went wrong in this process. The looping gets out of hand and begins to instruct muscles to tremble, or repeat a sound endlessly in the case of tinnitus.
It may be hard to understand for us lay people, but scientist hope it will lead to cure.
Ted Decock at 8:52 AM
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Sunday, November 30, 2008

HOMEOPATHY



People with incurable diseases such as Parkinson's are tempted to look at alternative treatment. With homeopathy James Randi avoids the word "medicine"! What is thought to be beneficial is the disease causing molecules but in very small quantities, hoping that natural defense will kick in. Not very likely, there may one molcule in a pill, or none at all.

You have to watch the following video:

http://www.youtube.com/watch?v=BWE1tH93G9U

Ted Decock at 5:15 PM
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Saturday, November 29, 2008

Don't lose Hope

Ten years after shocking the world with the announcement that he has Parkinson's, Michael J. Fox is aggressively fighting the disease – and says he still sees a bright future ahead.
"Based on how I feel now," the star tells , "I'll be okay for at least 10 more years."
He does not seek after symphaty. In fact Parkinson's, he feels, has led him into "an amazing life"
http://www.people.com/people/article/0,,20243073,00.html
Ted Decock at 10:05 AM
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Thursday, November 20, 2008

Curry


C U R R Y
Every time you hear about an everyday product doing unexpected things you kind of brush it aside. But when it shows up on the Michael J. Fox website you stop brushing!!
Curry has an ingredient, apparently, that saves a great deal of oxidative damage in the neurons that are at risk in Parkinson's. This finding was reported by the Johns Hopkins School of Medicine.
Read more at:
Ted Decock at 8:56 PM
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Wednesday, November 19, 2008

www.PDF.org


The internet is a tremendous resource for anything you want!
In our case we search for information on Parkinson's, comments by doctors, developments in medication, and a friendly symphathetic voice. You find all that and more on:


Check it out!
Ted Decock at 10:29 AM
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Friday, November 14, 2008

Recap of Treatments


Treatment for Parkinson's has evolved considerably over the last three decades. Existing treatments today can improve symptoms, delay onset of total physical dependence, hence delaying morbidity and mortality, which result due to progressive immobility. Levodopa (also called L-dopa) is the most commonly prescribed and most effective medication for controlling the symptoms of Parkinson's disease, particularly bradykinesia (slow movement) and rigidity. L-dopa is taken in combination with carbidopa (Sinemet) to increase its effectiveness and prevent or lessen side effects. Other treatments are dopamine agonists (Parlodel, Permax, Requip, Mirapex)-that activate dopamine receptor-taken alone or in combination with sinemet. Requip and Mirapex are newer medications, which are safer and more effective than the older drugs, Parlodel and Permax. Symmetrel, anticholinergics (artane, cogentin), eldepryl or deprenyl, Tasmar and Comtan (COMT Inhibitors) are other treatments for Parkinson's.

Ted Decock at 10:09 PM
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