Parkinson's Disease (PD) is a chronic neurological disorder which affects people of all ages, but primarily those over 50, with 57 being the average age of diagnosis. It is currently estimated that one million people in the United States are afflicted with Parkinson's, or about 0.4% of the population in general. Neurologists estimate that 1% of all people over the age of 60 have Parkinson's.

Parkinson's Disease is a biochemical disorder of the brain which slows body movement and response. Its main features include shaking (tremor) of various parts of the body, rigidity or stiffness of the limbs, slowness of movement, shuffling gait, stooped posture, loss of facial expression and slowing of thought processes. Without treatment it is slowly progressive and disabling.

In 1817, Dr. James Parkinson, an English physician, described these physical characteristics in a scientific paper on "The Shaking Palsy". His observations and descriptions remain accurate today even though knowledge and treatment have vastly improved. Less than 20 years ago, researchers discovered that Parkinson's results when an essential chemical substance which acts as a "brain messenger" -- Dopamine -- is diminished in the brain. Dopamine is a neuro-transmitter found primarily in the basal ganglia of the brain. At present the cause of its loss is unknown, but treatment aims at controlling symptoms which differ from person to person in degree of severity. Parkinson's Disease can cause chronic disability but it is not usually fatal. Treatment includes medications to replace the Dopamine and sensitize brain cell to its action, as well as physical and occupational therapies.

...adapted from the web site of the Parkinson Foundation of Harris County.

Another "Definition:"

The terms, Parkinson's disease, Parkinson syndrome, Parkinsonism and Parkinsons are often used interchangeably for the chronic neuro-degenerative condition with features of tremor, slow movements and stiffness of muscles. There are two definitions of the word "disease" - the public's definition and the scientific dictionary definition. When scientists speak about "a disease" they are talking about a condition with a known cause. That is why we do not refer to Parkinsons as a disease - we do not know the cause.

Today, in Canada, there are about 100,000 people suffering with Parkinsons. The condition is more common over the age of 55, but it can occur in younger people. Men and women are equally affected and more than half of them are diagnosed before retirement age.

The "Cause":

An area of the brain called substantia nigra contains cells which produce a chemical called dopamine. With the death of these cells, and the resultant deficiency of dopamine, there is an interference in the transmission of messages between the nerve cells which makes initiating movement difficult. Parkinsons is not thought to be inherited but there are cases where it affects more than one family member. Research studies are being carried out to find out what might cause this to occur.

There is one thing that we are certain about - it is NOT contagious.

How is it Diagnosed:

There are no x-rays or tests which confirm the diagnosis. Neurologists diagnose Parkinsons by taking a thorough medical history and doing a careful clinical examination. Often tests are done to rule out other conditions which resemble Parkinsons.

Treatment:

Treatment is needed to correct the chemical imbalance. Drugs alleviate the symptoms but do not halt the progression of Parkinsons. As the symptoms increase, more medication is needed. While treatment does enable people to function better, it is not perfect and may cause side effects. Ongoing research is focused on finding more effective treatments.

...from Network 84, Parkinson Foundation of Canada.

Here's a talk by Dennis Greene that gives an idea as to how Parkinson's feels:

PD ­ a personal view by Dennis Greene Good morning. (Get them to clench a hand into a fist.) I am (biographical info) My task today is to try and convey to you something of what it is like to experience PD. I must stress that not for nothing has PD been called a designer disease. No two of us have the same symptoms and everything I say will be true for some PWP but not for others. Even what is true for me to day may or may not be true tomorrow. Another thing to keep in mind is that in the early to middle stage of PD, medication can, and for most of us does, reduce the severity of symptoms, often dramatically. It is as the disease progresses through later middle stage into end stage that problems with symptoms and side effects start to occur. So let's see if I can throw some light on PD's terrible triplets, tremor, rigidity, and bradykinesia. TREMOR I am what is sometimes referred to as a B type PWP, which means I don't experience much tremor. It also means of course that I don't have PD's one great visible signal. I keep coming up against members of the public who query my diagnosis. I can't say that I blame them, I questioned it too at first, and on the very same grounds. But although I don't have personal experience of tremor, I do have experience of dyskinesia, which has similar practical and social problems, and I have spoken and corresponded with many whose tremor dominates their lives. They find themselves frustrated at not being able to perform the simplest tasks. Meals, can become a nightmare. I have heard tales of food flung across restaurants, of drinks ending up everywhere but in the mouth - of cutlery redistributed at random across the table or the floor, or used to beat out an involuntary, syncopated rhythm on the plate. Even as mild a tremor as I experience can result in a sort of halo of scraps around my plate. And that little lot is just mealtimes. Still to come is every other thing you use your hands for; shaving - putting on makeup - turning a page - scratching an itch - signing a cheque - touching a loved one. Parkies are a resilient lot and many of the stories are told with a self-depreciating humor, and a fine sense of slapstick. But the sad fact is that these are not occurrences in a 90 minute movie, these are the relentless, all pervading, day in, day out reality of many PWP who laugh that they may not weep. Tremor, being so visible, is the cause of many a PWP avoiding what they see as the embarrassment of social occasions. And it is embarrassing. If anyone doubts this I invite them to "give" themselves a pronounced tremor in one hand - something like this (DEMONSTRATE)- and spend a day with it. Go shopping, discuss your purchases with the shop assistant, meet with a friend in a public place for coffee and conversation, catch the eye of strangers in a queue, sit next to someone on public transport or a park bench; and see how you go. Good luck. Speaking of reproducing the symptoms of PD are any of you still clenching your fist? If so please stop. Concentrate on how your hand and arm feel, and then imagine how they would feel if the clench went on for hours, or days, or years at a time. Welcome to the world of the rigid. RIGIDITY There seems to be a perception that PD is painless. This has not been my experience. That "interesting" cogwheel or lead pipe effect that health professionals love to detect in my joints is for me taut muscles that not only ache of their own accord just as your arms and hands just did, but also causes poor posture with all of its attendant backache. Rigidity also robs me of true relaxation. I can remember what it was like to sit back in an armchair and feel the tension drain out off my body; I can remember the sensation of feeling my limbs go floppy, but I no longer experience it. Instead, when sitting on a chair now, I experience the curious sensation of pulling away from the chair even as I sink into it as a dead weight. This apparent contrast in sensations is the result of an overlap with the third leg of the PD tripod, bradykinesia. BRADYKINESIA Bradykinesia or slowness of movement is like one of those little Russian dolls that nest inside each other. Its effects just keep on coming. They include: The inability to start a movement (freezing) The slow execution of a movement The slowing down of an already slow movement until it stops and a freeze ensues Reduced arm swing A shuffling walk Difficulties with speech Difficulties swallowing Bowel and bladder problems Reduced body movements Reduced blinking Reduced facial expression. You will be happy to hear that I have no intention of taking you in detail through the whole exciting range of symptoms. It takes little imagination to empathise with the balance problems of someone who moves his feet two or three inches at a time, and like the clenched hand it is easily reproduced by any of you who wants to. I'll touch on swallowing problems only to say that drooling is yet another dampener on socialising, if you will pardon the pun and as the bowel and bladder problems experienced by PWP are hardly unique to them I will bypass them here even if I can't in life. But there are two areas I do want to explore with you, because they directly impact on your own interaction with your Parkinson's patients. The first area that I would like to look at are some of the problems associated with freezing, initiating movement and slow movement itself. In particular I am going to concentrate on why we PWP seem to have such trouble at times responding to the simplest request. The brother of a friend of mine complained to me once that my friend, a PWP of many years standing, wouldn't help him with a carpentry project. "All I want him to do is stand there and pass me things" he said. And on the face of it he has a legitimate complaint. For the Person WITHOUT PD what could be simpler. Glance around, identify the screwdriver, pick it up and pass it over. Easy. Not so for your PWP. That simple request is in fact a litany of things to do because each step of the way requires an individual decision. This simple 4-step process becomes something on the lines of: * Think about request * Decide to respond * Decide this requires you to look for screwdriver * Instruct yourself to move your head (or perhaps your whole body) to the left in order to look there for the screwdriver * Instruct yourself to move your head or body to the right to continue looking for the screwdriver * Look at each item in turn and decide to keep looking because it isn't a screwdriver * Find the screwdriver. * Stop looking (this doesn't need a command ­ stopping comes naturally) * Instruct yourself to reach towards the screwdriver * Instruct your hand to stop over the screwdriver *Instruct yourself to lower your hand onto the screwdriver * Instruct your fingers to close around the screwdriver * Instruct yourself to lift the screwdriver * Instruct yourself to turn towards the carpenter * Instruct yourself to walk towards the carpenter * Left ­ right ­ left - right - left...... * Instruct yourself to hold the screwdriver out to the carpenter * Instruct your fingers to release the screwdriver * Instruct yourself to turn away * Left ­ right ­ left - right - left ....... And as you move away you hear him asking for a hammer. And all of this under the pressure of knowing that someone is waiting for you to get on with it. I am not suggesting that we PWP not be asked to do things ­ I only ask that allowance be made for how hard we are working. The second area that I want to draw your attention to is one which affects your perception of the PWP as a person. The mask like face and slow moving body of a bradykinetic PWP are easily recognised. What is not so easily recognised is that the lack of facial expression, body movement, blinking, and spontaneity combine to send a message in body language that is potentially offensive to you, the recipient. People in conversation with a PWP often form the opinion that the PWP is not interested in, or even listening to what they are saying. They are not getting those little encouraging nods, no smiles are forthcoming and the PWP could even be looking slightly away from them, making no apparent effort to turn towards them or make eye contact. This can be interpreted as rudeness, lack of cooperation or even stupidity. Even people who are aware of the problem have difficulty with it. THE "ON/OFF" SYNDROME I made mention earlier of the problems with medication encountered by middle and late stage PWP. These include dyskinesia, hallucinations, dystonia and the "on /off" syndrome. Dyskinesia, the involuntary movements associated with an overdose of levodopa is enough like tremor in its effects as not to require repeating except to say that its presence complicates the already complex enough business of getting the meds balance right. Dyskinesia has ruined many an otherwise good on period. It adds RSI to the list of ills we face and sends some of us down the path to surgery. Hallucinations are beyond my ken. I haven't had them and hope never to. I am in no way qualified to speak on them so I won't. I am however well acquainted with dystonia and the "on/off" syndrome. In my case they are connected because I experience dystonia as part of the change from "off" to "on . It's another painful part of painless Parkinson's. About the only worthwhile thing I can find to say about feeling my left leg go rigid and then into spasm with the toes and foot trying to curl into a ball and the leg itself trying to twist out of its hip, is that better times are a-commin. They may be 5 seconds away or 5 minutes ­ but they are a-commin. Those of us who experience the "on/off" syndrome live a Jekyll and Hyde existence, changing in minutes from someone capable of just about anything, to someone who has difficulty doing something as simple as passing a screwdriver. If this is frustrating for those who deal with us, think how frustrating it is for us. I used to try and live my whole life during my "on" periods but there is too much life and not enough "on". Now I do the best I can with my "offs" and sometimes I do nothing at all with my "ons" except enjoy them. What else are they for?

From NINDS, (National Institute of Neurological Disorders and Stroke, a division of the U.S. NIH (National Institutes of Health)) Parkinson's Disease Information Page.

In fact, nearly all of the Parkinson web sites, whether owned by a foundation, a hospital, a doctor, a pharmeceutical house, or a patient such as myself, will give you an overview as to what Parkinson's is. Search around, and you will see it from many different angles.

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E-mail me with comments at epr@airmail.net.

	It is a sad fact that every web page like this must add "Disclaimers apply." Revised 25 May, 2004

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