Parkinson Disease's Effect on Mortality Eclipses Heart Disease and Other Common Illnesses of the Elderly

This rather sobering study (from the January 2nd edition of Archives of Neurology) is quite sobering, but also helpful, since it points us toward aspects of the illness not fully appreciated by the medical community at large (already suspected by most neurologists who have a concentrated number of Parkinson patients in their clinic), and this is important because it can help us focus our efforts toward prevention.
The study references the average patient over the age of 65.
In summary, it says that the average risk of mortality from Parkinson Disease as an independent diagnosis is equal to that (or greater) than that of stroke, heart disease, or hip fracture....

Essentially:

60 % will die within 6 years.

It also tells us that some degree of dementia affects more than HALF of people over the age of 65 with a diagnosis of DEMENTIA.

Was this a small, obscure study? No. The lead author (Allison W Willis, MD of Wash U.) reviewed the Medicare records of 38 million Americans, identifying 550,000 cases of PD overall among those over the age of 65, and specifically looked at new cases (138,728 patients between the years 2002 and 2008).
It showed a couple trends:
96% were white. 6% were African-American. 2% were Hispanic. 1% were Asian.
The incidence was more common among men.
67% of men also had a diagnosis of dementia or mild cognitive impairment which is often a prelude to dementia.
71% of women also had a diagnosis of dementia or mild cognitive impairment, slightly more common in the African-American population and slightly less among Asians.

So in general, it would tell us that compared to someone else over the age of 65 without a chronic illness, the elderly with Parkinson Disease is 3.87 more likely to die during the 6 year study. Why did they die? Many reasons, which was not part of the study per se, but they did notice some trends such as the fact that they were almost 4 times (3.74) more likely to die of a hip fracture, 3.62 times more likely to die from a heat attack, and 2 times more likely to die from a stroke.

So, the reality is, this doesn't seem to pan out in my experience with patient to be quite so dismal. It probably should tell us that there is at least a trend of poorer outcomes and we should be asking why.

POTENTIAL FLAWS in the study which would affect the reliability in the results:
-Many other illnesses cause "parkinsonism" which are some symptoms similar to Parkinson Disease but not the same. Without an expert exam to confirm the diagnosis code in the computer, we can't be sure how many of these patients were correctly diagnosed. For instance, Lewy Body Dementia is a dementia that has some symptoms like Parkinson Disease but just isn't the same and is commonly misdiagnosed.
-How early were these people really diagnosed. Maybe they were diagnosed later than they should if the early symptoms were missed, which would make them sicker a the time of diagnosis.
-It doesn't identify who has their symptoms controlled well and who poorly

SO, If YOU have Parkinson Disease, what does this mean? Well, it means your risk of dying is definitely greater than someone else your age without the diagnosis.... IF you don't control the illness as well as possible, you are at a greater risk of falls and hip fracture which often leads to death quickly.
And without regular exercise and physical therapy, you are more likely to live a sedentary lifestyle, which sets you up to have a greater risk of stroke and heart disease.

So what should we be doing for you as your physician?
-Screening you more closely for vascular disease which might lead to stroke and heart attack
-Screening you for apnea and sleep disorders which have been shown to lead to cognitive impairment/dementia
-Being more bold about making you do physical therapy, home exercise, stretching
-Being more bold about finding the best combinations of medications to help keep you moving, stable, and limber
-Making sure you have appropriate walkers when needed and making sure your home fall risk is properly assessed.

Parkinson's Disease: Part 2

In Part 1, I brought up some of the very basic anatomy associated with Parkinson's Disease: the basal ganglia, the substantia nigra as the maker of dopamine which infuses up into the main complex body of the basal ganglia, and that your basal ganglia needs to be in well-working order to smooth out your movements.

Now, before there are obvious clinical symptoms of Parkinson's Disease, we can sometimes have some other symptoms that can hint of the disorder earlier. These are some of these symptoms, and they are not always related directly to basal ganglia:

Anosmia/Hyposmia (Decreased sense of smell)
Chronic constipation
Shoulder pain
Trouble with zippers and buttons
Sleep disturbance (admittedly ambiguous; it can be multi-factorial)
Some new uncharacteristic behavioral changes such as depression or anxiety
New onset fatigue
A feeling of "internal tremor" before anything is seen on the outside

*Usually you would need a few of these together, since, by themselves, other causes could be found.

But the clinical ones are the ones people often present to their Primary Care Physician with first:

Tremor: The characteristic shaking associated with Parkinson's often begins in the hands, usually one hand first, or is more obvious in one first. It is usually a "slower" tremor... although this is in comparison to other causes of a faster tremor, but your physician has seen other tremors for comparison. It is usually more present at rest, and improves a bit with movements. NOT everyone gets a tremor. NOT everyone has it first or only in the hands; it can be in the head/neck, or seen in the legs too. NOT everyone's tremor is easy to distinguish from other types and that is why a tremor ALONE is not enough to diagnose Parkinson's, and the patient's symptoms and history must be considered AS A WHOLE FOR A PROPER DIAGNOSIS.

Slowed movements: We call this bradykinesia. "Brady" just means slow, like when we say brady-cardia (slow heart). In this case kinesia is movements, like kinetic energy is the energy of an object in motion. In Parkinson's, the ability to make movements is slowed down over time. This can make even simple tasks hard to carry out, and therefore frustrating. When walking, this can make steps become short and shuffling, or can even make it hard to actually start that first step, as if the desire is there but the body just won't follow your wishes exactly, as if your movements are frozen. This can contribute to falls, because it becomes difficult to walk like you used to and then hard to make those quick movements you need to catch yourself if you start to stumble.

Impaired posture and balance: With Parkinson's, people may develop a stooped posture with time. Balance problems also occur, later on in time.

Stiff or rigid muscles: We often check for this on your exam by asking you to relax and then letting us bend your arms and/or legs for you passively. This stiffness can happen in any part of your body. It can be so severe that it limits the full angle you move/open & close your joints and be painful, or it can initially also be so subtle that we notice it by the fact that you don't swing your arms very much when you walk.

Less automatic subtle movements: When we interact with people around us, walk around, do our daily activities, we are full of subtle, unconscious actions that we have learned throughout our lifetimes. These are such things as little facial movements like part-smiles & part-frowns, eyebrow lifts, shoulder shrugs when we talk, blinking, other little gestures of our face/head/arms as we talk, the arm swings when we walk around I mentioned above. We don't think about these after awhile; they become part of the subtle and unconscious constellation of motor habits we develop over a lifetime. They tend to be diminished or absent sometimes in Parkinson's. Often, the patient has a hard time realizing it, because they have diminished gradually, although if we asked loved ones about a comparison from a year or two ago, then retrospectively, the change is easier to recognize.

Speech changes: Just as the subtle movements of our arms/legs/face are diminished, so are the subtle fluctuations of our voice that give it the dynamic and unique subtle twists and turns that are present when we are in conversation with people. If you think about it, the human language is full of indirect meanings, two things being said at the same time, emphasis on certain aspects of what we're saying depending on how we say it.... in other words, we convey more in our speech than we do with words alone. In Parkinson's, people may speak with a more monotone voice initially with less vocal expression, and gradually speak more softly, more slowly, or slowly then speed up rapidly, mumble or slur words together, repeat words, or hesitate before speaking. This can grow to become frustrating to the individual because they often know exactly what they want to say, but have trouble making their mouth follow their thoughts.

Dementia: Some people develop difficulty with memory and mental clarity early in Parkinson's early, but this is rare, and if it's too much, the clinician should really doubt the pure diagnosis of Parkinson's. It may be something else, with some features in common with Parkinson's. Most people think like they used to, especially earlier in the illness. In the late stages of Parkinson's, difficulties with thinking can occur, and are often treated with some of the same medications used for Alzheimer's, and other medications can be used as well.

I mentioned that dopamine is only part of the beginning of the story. As degeneration of cells happens in the brain, it continues to progress, and starts to affect the health of nearby braincells and the neurotransmitters they produce (other than dopamine) which normally help the other parts of the brain communicate to each other.

Other symptoms which may develop:

Depression: This is not uncommon. First of all, having an illness can be depressing on its own, but many individuals with Parkinson's need to receive treatment for depression which can make it easier to handle the other challenges of Parkinson's.

Difficulty chewing and swallowing: This is an extension of the problem with movements. Slowed and hesitant movements while trying to walk is problematic, but the same thing while eating can lead to decreased food intake and even choking.

Urinary problems: This happens in older men anyway due to the common problem with prostate enlargement, and in women who have had children. But in Parkinson's, it can also cause too much retention of urine or incontinence. Medications given to treat Parkinson's can also make it difficult to urinate. Trying to discern the true problem can be tricky.

Constipation: Just as your hand movements can be slower, so can your digestive tract, making food linger longer. And, again, the medications we treat you with can cause constipation.

Sleep problems: Individuals with Parkinson's usually don't sleep as well as their counterparts without the illness. It comes from multiple reasons. They are more likely to have apnea (brief choking episodes at night) because of the changes of the musculature in their throat, more likely to wake up during the night due an instability of sleep from the changes in brain neurotransmitters, or have sudden overwhelming desires to sleep during the day (sleep attacks) for the same reason. They can also have issues with acting out their dreams with greater degrees of movement like kicking or punching or jumping out of bed (please note, this is different than hallucinations or confusion or the such...)

Sexual dysfunction: This can be from numerous reasons: depression, physical restraints of movements making it too "inconvenient" or frustrating, psychological factors from the above or from a concern regarding ability to perform like before, or things like delay to orgasm/erectile dysfunction due to changes in neurotransmitters. Unfortunately, many patients are embarrassed to bring this up, but they should. This is an important aspect of your health, just as being mobile enough to independently make your own breakfast or dress yourself, etc.

Now... our intentions as clinicians are pure, to try help you live better and longer, with medications... BUT our attempts can also cause a number of complications, including involuntary twitching or jerky movements, excessive sleepiness/drowsiness/fuzzy thinking, hallucinations, dizziness when standing or sitting due to sudden drops in blood pressure, constipation or urinary problems...

On to Part 3...

Parkinson's Disease: Part 1

For this Part 1 on Parkinson's disease, I think it's important that we start with a very simple anatomy lesson, so you can understand where Parkinson's comes from. This is by no means the whole story, but it is the basic understanding one should have about this process.

I think we need to start with a small discussion about the basal ganglia. When you make a thought to move, the reality is that your thought to move is very coarse. It is not the refined, smooth, quick movements that help us drink our coffee, write, catch our-self if we start to stumble, negotiate walking stairs, etc. Our thought to move is more of a thought for a coarse "spurt" of movement in certain area such as the fingers or leg, etc.

That initial thought is then worked over and negotiated by many parts of the brain for the actual smooth, purposeful movements that you wish to have, and need to make throughout your day. One of the large players in negotiating that movement to make it smooth and specific is the basal ganglia.

The basal ganglia sits in the middle of the brain, deep in the brain. The basal ganglia is actually a combination of many on and off switches. These on and off switches help negotiate your movements and help them be fine instead of course and bulky.

Now to talk about how the basal ganglia helps your movements we also need to talk about dopamine. Dopamine is just one of many many types of

neurotransmitters in the human brain. Essentially what you need to know is that a neurotransmitter is just a chemical that helps your brain communicate within itself, amongst its own parts, like someone hired by a company to carry messages back and forth amongst the different departments. Dopamine is used in many parts of the human brain. Essentially your brain found that dopamine was useful and then tried to use it in as many ways as possible to conserve resources. It is actually quite an excellent design that the human brain can use one messenger, dopamine, to say so many different things in different parts of the brain.

But dopamine is one of the main messenger chemicals used in the basal ganglia.

In summary: NOT having enough DOPAMINE, for the BASAL GANGLIA to do its job, is essentially what is going wrong in Parkinson's Disease. That is the cause for the majority of clinical symptoms. That is what we try to address as physicians.

So, you don't have to understand the details of this picture, but I do want you to understand basically:

1: Where the basal ganglia is in the brain compared to other structures

and

2: That the basal ganglia is made up a few parts that work together

Here is what it looks like from the front. (Look mainly at the silhouette of the human head to the right to see it's basic location in our brain)

And this is what the basal ganglia looks like from the side view:

Now, if you removed it from the brain entirely and held it in your hand, the basal ganglia would look like this. In this picture, many of its parts are labeled.

Now, dopamine has to be made somewhere... and it's made in a factory inside the brain, called the substantia nigra. "Nigra" because when anatomist cut open the brain, the cells that are found in this part of the brain (that make dopamine) look black, and the Latin word for black is nigra. In fact, "substantia nigra" sounds fancy.... but literally means "black substance." In other words, you could say that your dopamine comes from a part of the brain called the black substance.

So, here it is, the substantia nigra. It does look like "black substance." This is where dopamine is made before working in the rest of the basal ganglia to make your movements as purposeful and smooth and fast as you would like them to be.

And here is a quick look at the substantia nigra,
feeding into the basal ganglia to deliver dopamine, to be utilized here.

 

On to Part 2...