Parkinson's Disease Tulip


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Old 10-29-2007, 08:26 PM #1
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Default confused.. pd or pdism?

just found this.. now im more confused. i had encephalitis/menangitis when i was 15 so was given a dxd of pdism.

from: http://www.mayoclinic.com/health/parkinsonism/AN01178

Parkinsonism refers to any condition that causes a combination of the movement abnormalities seen in Parkinson's disease — such as tremors, slow movement, impaired speech or muscle stiffness — resulting from the loss of dopamine-containing nerve cells (neurons). The most common cause of parkinsonism is Parkinson's disease. But not everyone who has parkinsonism has Parkinson's disease. Other causes of parkinsonism include:

Stroke
Encephalitis, inflammation of the brain usually caused by infection
Meningitis, inflammation of the membranes covering the brain and spinal cord
Progressive supranuclear palsy, a rare degenerative brain disorder
Multiple systems atrophy, a degenerative disorder that destroys nerve tissue
Corticobasal degeneration, a rare neurological disease
Certain medications, such as some antipsychotics and metoclopramide
Head trauma, isolated or repeated, such as injuries sustained in boxing
No definitive tests exist for parkinsonism or Parkinson's disease. A diagnosis is usually based on your medical history, observations of signs of the condition and a neurological exam. In the early stages of the disease, it may be difficult to know if parkinsonism is due to Parkinson's disease or another condition that mimics it. The development of additional signs and symptoms and the progression of the disease may establish the correct diagnosis.

Treatment of parkinsonism is directed at the underlying cause when possible and may include medication to manage the signs and symptoms

also from http://www.patient.co.uk/showdoc/40000777/

Movement disorder characterised by degeneration of the dopaminergic nigrostriatal pathway in the brain. The ventral tier of the zona compacta of the substantia nigra is particularly affected with reduction of dopamine in the striatum. Parkinson’s disease is used to describe the idiopathic syndrome of parkinsonism. Drug-induced parkinsonism is caused by drugs that block the dopamine receptors or reduce storage of dopamine. This is mainly the major tranquilisers used to treat psychosis but the condition can also be seen with drugs used to treat nausea e.g. metoclopramide.1
Parkinsonism may also occur following encephalitis or exposure to certain toxins, e.g. manganese dust, carbon disulfide, severe CO poisoning.

then there is from http://www.ohsu.edu/pco/parkinsons_d...s_disease.html

What is Parkinsonism?
Parkinsonism is a progressive degenerative disorder affecting one of the regions of the brain controlling movement. The most common symptoms are tremor, muscular stiffness, and slowness of movement. Although there are different types of parkinsonism, the most common condition today is the one first recognized in 1817, by James Parkinson, referred to as idiopathic Parkinson’s disease.

While experts agree symptoms are due to a deficiency of the brain chemical, dopamine, they are uncertain as to why the nerve cells containing dopamine die. Parkinson's disease is not contagious.

The incidence of Parkinson’s disease increases with age and is uncommon in people younger than forty. Although it is not a regular feature, intellectual impairment may occur in the later stages of the disease.

Parkinson's disease affects both men and women across all ethnic lines. The disease occurs in approximately two out of 100 people over the age of 55. An estimated 1,500,000 people in the United State are afflicted with this disease.

The Symptoms and Appearance
Slowness of movement
This is the most disabling symptom. Initially, it often begins in one arm with a loss of manual dexterity. The slowness makes it difficult to get out of a chair or turn in bed. Fine movements such as buttoning clothing and using a fork or knife may become difficult. Handwriting may become cramped and small.

Later, the person appears to be in slow motion and if not treated may become virtually frozen like a statue. Because of the enormous energy it takes to overcome slowness, the person with Parkinson's disease often complains of being "weak" although there is not true muscular weakness.

Tremor
Tremor or shaking occurs in about two-thirds of people with Parkinsonism and is often the most visible and obvious sign of the disease. While the Parkinson tremor usually affects the hands and feet it sometimes involves the lips, tongue, and jaw. The tremor is more visible while at rest or while walking and will usually stop during movement of the hand.

Muscle stiffness
Stiffness combined with slowness may cause aching muscles and joints, especially in the shoulders. This is sometimes misinterpreted as "arthritis" or "bursitis."

Masked face
An often confusing characteristic of the disease is the presence of a "masked face," showing little or no emotion. Blinking and spontaneous eye movements are less frequent, giving rise to a staring expression. This can be misinterpreted as lack of interest or depression.

Walking difficulties
The gait may be slow with short steps. A person with Parkinsonism may also intermittently freeze as if the feet were stuck to the floor. Freezing occurs especially when approaching doorways or if forced to hurry. There is a propensity to bend the trunk forward and to walk with out swinging the arms. It is common to have difficulties with balance.

Speech problems
About one half of all individuals with Parkinson's disease develop difficulty with their speech. The most common problem is a soft or fading voice. Communication can be complicated further by a fast mumbling speech with uncontrollable repetitions of the first syllable.

Swallowing difficulties
Some individuals experience difficulty eating because their ability to swallow has become impaired. Food may collect in the mouth or the back of the throat resulting in choking or coughing. Friends and family members may wish to become familiar with the Heimlich Maneuver in the event of a choking episode. A physician or other health professional can explain this procedure.

Troubling inconsistencies
It is important to note that an individual's symptoms may vary from moment-to-moment and day-to-day. Symptoms may be nonexistent one minute only to suddenly reappear for no clear reason. These variations can be due to the disease or medications. Such fluctuations will often confuse or frustrate caregiver, family, and friends who are unaware of the fickle nature of this disease.

How is the disease treated?
There is presently no cure or prevention of Parkinson's disease. However, the symptoms can be substantially or sometimes completely alleviated with medications, especially during the earlier stages. Patients need to establish a strong relationship with their physician to maintain effective and comfortable levels of medication.

No treatment may be necessary for some patients with mild symptoms associated with the early stages of the disease.

i became confused after reading:

http://www.merck.com/mmhe/sec06/ch091/ch091e.html


Parkinsonism refers to symptoms of Parkinson's disease (such as slow movements and tremors) that are caused by another condition.

Various conditions can cause parkinsonism:

Viral encephalitis, a rare brain inflammation that follows a flu-like infection
Other degenerative disorders, such as dementia, multiple system atrophy, corticobasal ganglionic degeneration, and progressive supranuclear palsy
Structural brain disorders, such as brain tumors and strokes
Head injury, particularly the repeated injury that occurs in boxing (making a person punch-drunk)
Drugs, such as antipsychotics and the antihypertensives methyldopaSome Trade Names
ALDOMET
and reserpine
Toxins, such as manganese, carbon monoxide, and methanol

Certain drugs and toxins interfere with or block the action of dopamine and other neurotransmitters. For example, antipsychotic drugs, used to treat paranoia and schizophrenia, block dopamine's action. Use of the substance MPTP (which was produced accidentally when illicit drug users tried to synthesize the opioid meperidineSome Trade Names
DEMEROL
) can cause sudden, severe, irreversible parkinsonism in young people.

Symptoms

Parkinsonism causes the same symptoms as Parkinson's disease (see Movement Disorders: Symptoms). They include a resting tremor, stiff muscles, slow movements, and difficulty maintaining balance and walking.

The disorders that cause parkinsonism may also cause other symptoms or variations of parkinsonian symptoms, as in the following:

Prominent memory loss due to dementia
Symptoms of parkinsonism on only one side of the body due to certain brain tumors
Low blood pressure and urinary problems due to multiple system atrophy
Inability to express or understand spoken or written language (aphasia), inability to do simple skilled tasks (apraxia), and inability to associate objects with their usual role or function (agnosia) due to corticobasal ganglionic degeneration

In corticobasal ganglionic degeneration, symptoms begin after age 60. People become immobile after about 5 years, and death typically occurs after about 10 years.

Diagnosis

Doctors ask about previous disorders, exposure to toxins, and use of drugs that could cause parkinsonism. Brain imaging, such as computed tomography (CT) or magnetic resonance imaging (MRI), may be done to look for a structural disorder that may be causing the symptoms.

If the diagnosis is unclear, doctors may give the person levodopa
Some Trade Names
DOPAR
LARODOPA
, a drug used to treat Parkinson's disease, to rule out Parkinson's disease. If the drug results in clear improvement, Parkinson's disease is the likely cause.

Treatment

The cause is corrected or treated if possible. If a drug is the cause, stopping the drug may cure the disorder. Symptoms may lessen or disappear if the underlying disorder can be treated. The drugs used to treat Parkinson's disease (such as levodopaSome Trade Names
DOPAR
LARODOPA
) are often not effective in people with parkinsonism but can sometimes offer modest improvement.

Drugs are used if symptoms are bothersome. If the cause is use of antipsychotic drugs, amantadineSome Trade Names
SYMMETREL
or a drug with anticholinergic effects, such as benztropineSome Trade Names
COGENTIN
, may relieve symptoms.

The same general measures used to help people with Parkinson's disease maintain mobility and independence are useful (see Movement Disorders: General Measures). For example, people should remain as active as possible, simplify daily tasks, use assistive devices as needed, and take measures to make the home safe (such as removing throw rugs to prevent tripping). Physical and occupational therapists can help people implement these measures. Good nutrition is also important.

ok...
so, i was dxd with the ism because i had positive response to levadopa. now, im saying what???

it gets better.. the same doc who dxd me with post-encephalitic pdism changed the dxd to idiopathic pd when i went to have my dbs cuz they wont do dbs on post encephalitic patients.

i keep going back and forth, back and forth. i cant figure out if this makes sense or not.. am i an ism with pd, or a pd, or just an ism?
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Old 10-29-2007, 09:49 PM #2
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Default Parkin, Parkinson's Disease, Idiopathic Parkinson's, Par...

Neurologist's don't know any more than you. They don't care about diagnosing patients correctly, only to treat their symptoms correctly. Which is the reason advanced brain scans are available to researchers and not patients. Doctors don't care about a correct diagnosis unless it changes the patient's treatment. The researchers control the diagnosing tools and the information leading to a correct diagnosis leaving the patient in the dark. I may be the only patient who knows what my gene tests results are because I had it done before entering a gene study group and signing away my right to know.

Good Luck!
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Old 10-29-2007, 10:17 PM #3
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Default Harley

I think you have done a good job of pointing out just how absurd it all is. It is as though we are all sitting around playing poker. They want to classify us in groups such as "flush" and "pair" and "straight" and pretend that that is important. That's how they build a career.

The truth is far more complex and trying understand the permutations of 52 cards is so much more difficult than just five.

But there are common elements and somewhere there are common malfunctions that overlap to produce our own individual manifestation. That's messy and they don't like messy.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 10-30-2007, 08:02 AM #4
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Rick - so what do you think the answer is regarding the issue of care? I know that you are a huge proponent of self care, but what do you think the doctors who treat PD patients should be doing?

Just wondering because I'm pretty happy with my doc who takes the perspective that every person who walks through her door with the broad label of "Parkinson's patient" is completely unique and needs to be treated with individual care, seeking answers beyond the conventional.

Harley - you have every right to be confused!
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Old 10-30-2007, 08:23 AM #5
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I think you are very fortunate to have such a doctor and I agree with her completely. PD requires an individualized approach and that is time consuming and very challenging. It is so hard to find that self-care becomes the best we can do.

In an ideal situation (for me at least) a PWP would be able to have recourse to a place where doctors and other professionals would spend a few days literally living with them and getting to know them. That seems like such a basic requirement for such an individualized problem. Only then would the discussion turn to care.

I suspect that one thing that many of us share is a need for care. Most of us have spent a lot of our selves givinng care to others either literally or metaphorically. Now we need it and find it is not there. Would it not be wonderful if the standard treatment for PD was shifted from drugs to an approach that enabled us to live a low-stress life with aid from professionals who cared enough to know us? To be able to stop worrying about how we are going to support ourselves and our family? To not have to worry about what will become of us?

Some of us would need that care 24/7 and some of us would only need to know it was there if required. Cost would be substantial but I bet that if added up over a lifetime it would be cheaper than what we have now.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 10-30-2007, 08:42 AM #6
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Rick - I agree. I asked the question because more and more, from an advocacy perspective, I believe the best use of my time is to push education and awareness of the need for exactly what you describe as "state of the art" Parkinson's treatment. My neuropsych was the one who talked me into the true value of early retirement - the stress of working longer would have killed me faster than the PD.

The cool thing about the clinic I go to is that they are actually trying to figure out ways to "spread the gospel" - one big hurdle is the lack of scientific evidence that their approach works (can't move docs in a new direction unless you can "prove it") So they are working to design outcomes based studies in order to do just that.

It's a long process; I'm glad they are practicing what they know in their guts to be true in the meantime.
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Old 10-30-2007, 09:31 AM #7
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carey.. i am glad you are getting good treatment there. maybe the doc has changed since i saw her and she put me through that total hell with the misdxd of anxiety disorder. im curious if she remembers me. say hello from laura dean and let me know her expression.. of course, i realize i am very atypical.. which goes to show my confusion is added to with the docs confusion. sorry hon, just got horrible memories of her. nothing personal intended towards you or the treatment you are receiving there..

i agree 110% rick on individual attention. this umbrella of "ism"s is too wide. in my opinion, it allows to many generalities for docs to stick under instead of regarding us as seperate humans. it puts a label on us and shoves us out the door to face the world with "hey, I have pdism".. what the hell??? most of the general population have no idea what an "ism" is. as well as most gps. so, out comes parkinsons disease and all the ramifications that go along with it.

it makes no sense to me why we all have different symptoms, reactions to meds, progressions (if that is what they are.. have wondered about that as well. remind me to post my thought on atrophy of dopamine producing cells) and the like of what should be consistant in people who are living with the same disease. the newly dxd get different feedback from us, and have no other course to follow than "welcome to our club of designer disease. you may experience this, but then, you may not. good luck" sigh

i have backed my neuro into a corner on more than one occasion. I finally found one who will listen to me when i do that, and not try to play God. but, listening and reacting to my rantings are two different things. he goes with the flow of my pd or pdism.. and treats my symptoms with the knowledge he has to do it. i know there are times he wishes he could do more. and in all honesty, i feel for the guy.

so, what can we do? how can we get the word out there? we are a voice that needs to be heard.. but, they have been trained to not become involved in a personal level..
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