Guideline Summary for PATIENTS and THEIR FAMILIES

Parkinson's may progress less quickly when the main symptom is tremor.

> DIAGNOSIS AND PROGNOSIS OF NEW ONSET PARKINSON DISEASE

> INITIATION OF TREATMENT FOR PARKINSON DISEASE (2002)

> NEUROPROTECTIVE AND ALTERNATIVE THERAPIES FOR PARKINSON DISEASE

tools.aan.com/professionals...

There is good evidence that treatment with 2,000 units of Vitamin E should not be considered to slow the progression of Parkinson disease.

There is not enough evidence for or against the following to slow the progression of Parkinson disease:

• Riluzole: This is a drug used to slow the progress of amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease).

• Coenzyme Q10: This is a vitamin-like substance found in a variety of foods and produced naturally in the body.

• Pramipexole: This drug is used to treat the signs and symptoms of Parkinson disease, including tremors (shaking), stiffness, and slowness of movement.

• Ropinirole: This is used to treat the symptoms of Parkinson disease, including tremors (shaking), stiffness, and slowness of movement.

• Rasagiline: This drug is used to treat Parkinson disease, either by itself or in addition to levodopa therapy.

• Amantadine: This is used to treat Parkinson disease and conditions similar to Parkinson disease.

• Thalamotomy: This is a surgical procedure that destroys small areas of the thalamus (a structure deep within the brain) to reduce tremors.

Alternative therapies that improve motor function in Parkinson disease

Many people with Parkinson disease and their caregivers use alternative therapies not prescribed by a doctor. These include treatments such as herbs, vitamins, massage, and acupuncture.

There is good evidence that vitamin E should not be considered to treat the symptoms of Parkinson disease.

There is weak evidence that exercise therapy may be considered to improve motor function.

There is weak evidence that speech therapy may be considered to improve speech volume.

There is not enough evidence for or against the following to improve motor function:

• M pruriens, also known as cowhage or velvet bean

• Acupuncture, which involves penetrating the skin with thin, solid needles made of metal that are manipulated by the hands or by electrical stimulation

• Manual therapy, including chiropractic and osteopathic manipulation

• Biofeedback, a way of learning to control body functions such as heartbeat, blood pressure, and muscle

tension with the help of a special machine. This method can help control pain.

• Alexander technique, a type of manual therapy that requires developing awareness of posture in order to improve posture

• Vitamins other than vitamin E

Talk to your neurologist

People experiencing the signs of Parkinson disease should seek the care of a neurologist. Your doctor will

recommend an individualized treatment plan. This may include lifestyle changes. All treatments have some side effects. The choice of which side effects can be tolerated depends on the individual

[cjsg]

Well that was depressing.

[paddyfields in reply to cjsg]

Oh dear Roy Prop What brought that on? Did you really mean to be so negative!!!!!!! It cannot but help to optimise your general state of health and function by whatever means suits the individual. Often people say something helps delay PD when they probably mean it helps in the fight against unnecessary decline such as will happen to an older person if they throw up their hands on dx. and retire to an easy chair. If I can function better, it is immaterial to me whether it is PD's effects on motor function or the basic disease process which has been fought. The effects of PD are insidious and don't happen overnight so you don't have to go to extremes of exercise to lessen decline . Having said that, the evidence that forced pace and rhythmic exercise helps is growing apace. Twenty years ago, plasticity of the brain was thought to be confined to children but now stroke victims get a far better deal with physio designed to help the brain relearn movements. The Hungarian system of Conductive education for children whose brains are damaged around the time of birth and which involves repetitive movement has a proven track record. Hopefully I will have died of something else before the PD in my brain is beyond help from medication. My PD is tremor dominant and its true that the progression is relatively slow for which I am duly thankful as it gives me a chance to help myself.

[cjsg in reply to cjsg]

Our PD doc. said one time, "Nothing has been proven to help." She then went on to write a script for Physical Therapy. My hubby tates 25/250 carbadopa/ levadopa 4 times a day, Requip 8 mg 1 x a day and has just added Azelect. He also takes wellbutrin for years, which can have a adverse effect to the levadopa and the Azalect to make his PD movement worce. So what you going to do? He has taken CoQ10 longer than he has been diagnosed with PD. . If hubby thinks the exercise helps, then IT DOES. IF he thinks something helps THEN IT DOES.

I thank -you for posting the information. It always helps to know the "official stand" on something. Sort of like know your enemy.

[zawy]

Does the "2002" mean that was the most recent update to the article? That would be one explanation of its negativity. Being negative and being from a professional association of neurologists does not mean the article is being honest or truthful. I prefer looking directly at the research instead of listening to associations that represent the financial and business interests of their clients.

The new patient guidelines do not mention anything thing the patient can do to help himself and have not been updated since 2010.

aan.com/Guidelines/Home/Get...

So instead of being negative, they have switched to not providing suggestions for patients that might enable them to have more control in their health, which is good for the business interests of their clients, the neurologists. Never underestimate the extent to which associations of professionals can be evil to the clients (patients) of those professionals.

This article has been worded very carefully to make only negative statements. For example, several of the drugs in the "no evidence for or against slowing the progression" are beneficial at reducing symptoms. At least rasagiline has been shown to slow the progression over the course of 36 weeks, and even more over 72 weeks.

ncbi.nlm.nih.gov/pubmed/255...

ncbi.nlm.nih.gov/pubmed/214...

ncbi.nlm.nih.gov/pubmed/218...

ncbi.nlm.nih.gov/pubmed/228...

If there is good evidence vit E should not be used, why did the recent phase 3 trial in CoQ10 use it in both placebo and CoQ10 groups? Looked at the other way, if vitamin E is harmful as this implies, did it hide beneficial results in the negative CoQ10 trial?

Exercise was included in "weak evidence for improving motor function" but does not mention reducing other symptoms or improving quality of life.

In general, that's why the article is depressing: it does not mention reducing symptoms or improving quality of life. Just the progression.

Is there a reason it wants to be so negative? Is there a possible business reason for its clients to be this way? It's possible that instilling a sense of hopeless in patients in terms of trying to take control of their health is beneficial to the business interests of the association's clients.

Getting back to the suggestion from this article that "we do not know of anything that slows the progression of PD" consider this: lots of exercise, tea, coffee, smoking, magnesium, omega 3, and other things reduce the incidence of PD by 50% to 75% independently of each other, meaning any combination is even better. In hindsight, PD symptoms can be seen 10 years or more before diagnosis, so there are those in these studies who had all the same symptoms 10 years ago, but since they were also heavy into exercise, smoking, coffee, tea, omega 3, or magnesium, they were 2 or 4 times less likely to be diagnosed with PD. So I think it is unwise to avoid these treatments another 10 years, or to stop them.

[Auddonz]

My husband does not have tremors but has weakness which according to our primary is not consistent with Parkinsons. When I can get an appt with another neurolgist maybe we can get to the bottom of what he has.

[Nettiepie in reply to Auddonz]

Hello my main symptom is leg weakness. They are like rubber.they also burn like they are on fire ! Wish I could find someone with similar symptoms because my doctors seem stumped

[Andreajohnson in reply to Nettiepie]

I have leg weakness I struggle to stand in mornings they freeze and won't move and the pain in them is terrible. Yet I ride my horses and they are fine can't work it out !!!

[racerCP]

Royprop, you are a font of knowledge and a worthwhile read. I understand you are recently diagnosed, two or three years ago, but I always learn something not only in the substance of what you post but in the attitude and posture towards this affliction. All this talk about VOX, sleep deprivation and other conditions which may predate diagnosis, I never experienced any of them but here I am in the same boat so there is no why or wherefore there is only management and accommodation and making the most of our time. I also understand you do not take PD meds or am I wrong. You are as informative and stimulating as anyone I read and I am an avid reader of newsprint and books.

[Hidden in reply to racerCP]

take no PD meds by choice

Med cause problems

Med only effective few years

Med may be necessary when symptoms so severe, must then take meds

We are all in the same boat and must all bail together

Information comes from each as we experience symptom relief trials and errors

Information comes from each as we educate ourselves and avoid the "snake oil" and fraud

[racerCP]

Interestingly I have been examined by two quite highly-regarded neuros and neither recommended taking meds 'yet'. each was specific that no currently used med slows progression and therefore, except for amelioration of specific symptoms there is no need to medicate. I'm almost 75 so I feel many of my symptoms can be attributed to age alone; slowing, tremor, insomnia. I can live with the first two but the lack of continuous sleep is the most annoying and I wish there were a magic non-psychotropic substances. Melatonin is very helpful but the pattern of sleep, two to three hours of initial deep sleep followed by two-hours awake and then three hours of sleep....seems to work but only for the last half of three-hour sleep. Well, so much for venting.

Keep up your contributions, RoyProp.

[Hidden in reply to racerCP]

Ditto: "slowing, tremor, insomnia. I can live with the first two but the lack of continuous sleep is the most annoying"