Wednesday, April 1, 2015

An Inside Look at Parkinson's Disease

For Parkinson's Awareness Month, which is April, I wanted to give an inside look at what it is like to have Parkinson's Disease (PD). Some people know something about it either through experience or study, but many either know nothing about it, or have a very incomplete or stereotypical understanding of it.

To do that, I'm going to take you through a list of the most common symptoms someone with the disease tends to experience and relate my experience with them as it may apply.

Which leads to a disclaimer. With PD, there is no one-size-fits-all list both on symptoms or treatments. Any one PD patient may experience only a few of these, or several. A symptom one patient has, another may not. Even the characteristic tremors are not evident in all PD patients.

Some of the symptoms I'll list I've not had . . . yet. I may never have to deal with them. Some that I have, another PD patient will never have.

What is the basis for PD?


If you already know this information, feel free to skip to the next heading. For those who need a fuller picture, here are the basics you'll want to know.

Currently, PD is an incurable and progressive disease, meaning, as time goes by, it becomes worse. Commonly, there are 5 stages of disease progression.

  • Stage 1: Minor symptoms that don't impair daily life.
  • Stage 2: Symptoms cause tasks to take longer, but are still doable. Symptoms often progress to the unaffected side during this stage.
  • Stage 3: Characterized by balance issues, freezing, tendency to fall.
  • Stage 4: Many task are not able to be completed without assistance. Walking often needs a walker or other device. Can't live alone due to lack of mobility and tendency to fall.
  • Stage 5: Wheelchair bound, needing continual care, unable to do much for themselves.

Currently I'm in stage 2, which can last for who knows how long. Could be a couple of years or 15. Stage 3 is considered a turning point in making life especially difficult due to freezing of movements and the ever present threat of falls.

There is a common saying: you don't die from Parkinson's, you die with it. True in a literal sense. However, PD is often the reason for the other things that can kill you. Most common are falls resulting in life-threatening situations (obviously the older one gets, the more likely that can happen) or immediate death by blows to the head or other significant organs. Another example is depression resulting from PD that can lead to suicide, as happened in the case of Robin Williams recently.

Currently, it is unknown what causes PD. There are a few known contributing factors, including genetics and exposure to pesticide, but those only account for a few percentage points of those who come down with the disease. It has been determined that the causative factors for it tend to be 20 to 30 years prior to the manifestation of symptoms. Which means whatever caused me to get this disease likely happened in the 90s when I was in my 30's.

Some of the processes are understood. A simplified explanation is that the disruption of normal brain-chemical functioning results in dopamine-producing neuron death. Dopamine is a critical neuron messenger in the brain which controls movement, among other functions.

As we age, we naturally lose the ability to produce dopamine, but normally it never drops below the level where it affects the ability of the central nervous system to operate efficiently. For PD patients, this loss is sped up so that at some point in life, the dopamine supply drops to a critical level, making bodily movements difficult. As the PD patient ages, those supplies get lower and lower, resulting in the progression mentioned above.

It is estimated it affects around 6% of the world's population. It is the second biggest cause of neurological disorders, behind Alzheimer's.

It is said by the time a PD patient starts showing symptoms, 85% of the brain's dopamine-producing cells have died. Due to this progression, the bulk of PD patients don't start showing symptoms until after 55 years of age, which is why it is often associated with senior adults. However, there are a large number of patients who develop symptoms earlier than that. Some as early as their 20s (like Michael J. Fox) or early 50s (like me). Like I said, there is no one-size-fits-all when it comes to PD.

Parkinsonisms


The following list of symptoms are known as Parkinsonisms. That is, they are characteristic of PD. However, these symptoms are not always caused by PD. Indeed, there is currently no test to determine if a person has PD. Diagnosis is made by observing the presence of the symptoms, often prescribing a levadopa drug like Sinemet (which adds dopamine to the brain--if symptoms go away, it is a strong indicator of PD being the cause, but not definitively), and the elimination of other causes, such as strokes, ALS, multiple sclerosis, etc. One common disease that can produce tremors, for instance, is Essential Tremors. Like PD, they don't know what causes it, there is no cure, but isn't nearly as long-term debilitating as PD.

So if you have or know someone who has any of these symptoms, it doesn't necessarily mean it is PD. It does mean it is time to go see your doctor to find out what it is.

With that said, below is an non-exhaustive list of the most common PD symptoms and my experience, if any, with them.

Loss of smell


This is often one of the first symptoms people may notice. With it goes the ability to taste as well too. One commentor on a form I frequent recently commented that all wine taste the same to him now, so he no longer feels a need to splurge for the more expensive wines.

This is also a good spot to note that not all PD symptoms are motor related. There are several, as you'll see, that have little to do with movement ability.

So far, the loss of smell is one symptom I've skipped. If I've lost any smelling ability, it hasn't been enough to be noticeable. I may experience this later, or maybe never.

Depression


This is another early non-motor symptom. Due to the changes in the brain, plus the news that one has a non-curable, progressively debilitating disease, is depression. Aside from making life seem dreary and hopeless, it can lead to suicide if it gets bad enough.

Thankfully I've not experienced much depression thus far. The only depression I've had in the last four years I know wasn't due to PD, and happened before PD symptoms set in. It's possible PD may have contributed to it, but it only lasted a month and I was able to exit the depression once I dealt with the actual issues underlying it.

Dystonia


This is a condition that can have several causes. It refers to a lack of muscle tone and stiffness in a limb or other parts of the body. It can be painful.

With PD induced dystonia, the lack of dopamine produces erratic signals to the muscle, causing it to be in a continual state of contractions. This produces stiffness and pain, and lack of usability of that limb.

I have this primarily in my left arm, and to some degree in my left leg/foot. When I'm focused on something physical, I also experience it in my mouth.

The last time I took a "holiday" from my Sinemet medication, in part to see how much symptoms had developed, by the end of five days my left arm was so stiff and in pain it was unusable for task like typing. Needless to say I won't be trying that again.

This is the first symptom I noticed back in 2012, though I didn't know what it was at the time. When I was driving, my left hand involuntarily clamped hard on the steering wheel, causing tightness and pain in my left hand. The second symptom was pain in my shoulder when bringing my left arm over my head for a swimming stroke. The third symptom I noticed toward the end of that year was difficulty in typing as smoothly and quickly with my left hand--the loss of fine motor control of the fingers. All those resulted from dystonia.

Currently I always feel some stiffness and pain in that arm, but it gets better during peak periods of my medication, and worse towards the beginning and ends of my doses (known as off times). Like right now I'm 20 minutes from taking my next Sinemet pill, and typing is slow and difficult, with a constant dull pain along my arm. Thankfully, though minor tremors have migrated to my right arm/hand, it hasn't developed any dystonia so far. Hopefully it stays that way for a few years.

This is why if you visit with me in person, you'll notice I stretch my left arm, hand, and fingers a lot, and rub them when it gets bad, as it seems to help.

Another way a PD patient can get dystonia is from the levadopa medication itself. It is a subset of dyskinesia which we'll talk about in a bit. With the infusion of dopamine through drugs, the central nervous system's connections with the brain get over excited. One result of this is repeated contractions of a body part.

For me it is toe curling, specifically my left foot toe next to my small toe. Consequently, unlike my left arm's dystonia, my left foot's dystonia gets worse during a peak dose of Sinemet. If I'm on my feet much, that left toe begins to hurt as it is constantly pushing into the floor or bottom of my shoe. Sometimes it causes me to limp.

As the disease progresses, the Sinemet becomes less effective and the affected limbs more painful.


Tremors


This is the classic symptom most people think of in relation to PD. Due to motor-control neurons mis-firing, because of the lack of dopamine in the brain, erratic signals are sent to certain muscle groups, causing them to jerk or do repetitive motions.

One common motion you'll see is called "pill rolling," as the thumb moves in a circular motion around the fingers as if rolling a pill between them. Not all PD patients do that. I've experienced it some in my left hand when tremors were bad, but it has been a while since I've done that mostly likely thanks to my medicine.

This was the fourth symptom I noticed late in 2012. My left hand developed mild tremors. Over the course of 2013, it became noticeably worse and led me to go see a doctor. By the end of 2013, I had been diagnosed and was on medication for it. About the middle of 2014, my right hand began to show signs of tremors, indicating the disease was spreading to my right side.

Aside from making some task more difficult, the tremors make typing more of a chore. Frequently, my left fingers will be resting on the keyboard, and a finger will twitch, causing involuntary keystrokes that usually don't belong on the page. That combined with the dystonia means when I type, I often do a lot of backspacing.

My medications currently keep my tremors under control most of the time, except during off-times: at the beginning and end of a dose. However, stress tends to bring them out in full force. Like the last time I was stopped by the police for a taillight being out. When he asked me for my ID, my arm and hand were shaking like a leaf in a strong wind. Even minor stress can uncover some tremors at times, like focusing on something intensely. For example, when I do Yoga or Pilates, my hands tend to tremor some.

Over time, the medications will become less effective, requiring more extreme measures like Deep Brain Stimulation surgery (a pacemaker for the brain). Eventually, if I live long enough, not much will keep me from tremoring away. That usually happens in the more advanced stages: 4 and 5.

Dyskinesia


This is another form of uncontrolled movement. It is not caused by PD itself, but is a side-effect from using levadopa therapy. Since taking dopamine straight will not get to the brain, thanks to the brain's blood barrier, the primary treatment for PD symptoms is using a precursor of dopamine, levadopa, which can cross the blood-brain barrier. It then gets converted to dopamine once inside.

By supplying the brain with additional dopamine, it helps to replace that which is missing due to cell death, allowing the brain to operate normally. It effectively reduces many PD symptoms, sometimes making the person feel perfectly normal again, especially in the early stages. I'm one of the more unlucky ones in that regard, in that it has never made me feel perfectly normal, but it does significantly reduce the intensity level of my symptoms.

However, as mentioned above, it also has the side-effect of over-exciting the brain and central nervous system's connections. This results in a different form of uncontrolled movements resulting not from the disease, but extended use of the medicine.

The average time a person might expect to see dyskinesia symptoms after starting levadopa therapy is around 6 years, so I've read. Usually it takes higher doses over a period of time before symptoms manifest.

Unfortunately for me, I've beat that average by a mile. I took some levadopa in 2013 for about one or two months. Then I was off it until restarting in January of 2014. In September of 2014, upon doubling my Sinemet dose (one form of levadopa commonly used), I experienced my first dyskinesia symptoms. So we dropped it back down at the end of September and the symptoms disappeared.

Then my new neurologist prescribed Azilect. It isn't levadopa, but inhibits the breakdown of dopamine in the brain so it builds up a bigger supply. In effect, it magnifies the effect of any levadopa one is taking. When we started the 0.5 mg/day dose, I noticed a reappearance of dyskinesia, but fairly minor and manageable. Since we've upped it to the 1 mg/day dose, the dyskinesia has become significantly worse.

The difference between these uncontrolled movements and tremors is that these are smoother and bigger, and not limited to my hands. The primary areas it affects are my head, causing it to bob around, my left calf muscle and foot, and a general wobbly feel in my whole body. It feels like someone is putting their hand on me and pushing it around. So a lot less jerky like tremors. It can also make one talk less smooth, sort of stuttering.

A good example of this symptom is Michael J. Fox. If you pull up any of his recent interviews on YouTube, especially between the time of 2000 - 2010, you'll see him wiggling around a lot. Recently they came out with medication that helps reduce those effects, and I believe he has been using it, so real recent interviews he's not quite as bad. The bad news is that medication generally only last around six months.

As I mentioned previously, another effect of this symptom is additional dystonia due to the uncontrolled movements. Currently, I experience that in my left toes and my neck, which tires when my head moves around too much.

Probably the hardest aspect of this symptom to deal with so far has been standing or being on my feet for long periods of time. The hardest of those tends to be at church when I'm on my feet without moving much for around three hours. My left leg gets very antsy, like restless leg syndrome, making it an endurance exercise at times. That combined with the pain in my left toe make for a "fun" service.

Currently I'm not as bad as what you'll see if you've seen Michael J. Fox. But I'm on the road to it unless some changes in my medications eliminate it.

Constipation


Ah, everyone's favorite subject. PD tends to make one more prone to constipation. Let's just say I've experienced some real struggles with this one. I used to treat it by eating a good supply of prunes every night, but found a magnesium supplement works quite well. I take a magnesium taurate supplement twice a day, which gives me 200 mg per day. Haven't had any problems with this for months.

Nuff said.

Bladder/Bowel Control


PD can affect how well a person can control their excretion processes. I've had more than one "accident" on both ends of the system. Sinemet seems to have helped, as has taking a good probiotic (PD patients tend to be missing whole families of bacteria in the gut).

My two biggest problems with this so far relates to the bladder. One, at times I've lost my early warning system. When I start feeling I need to go, I've got precious little time before it becomes desperate. This makes taking trips a real pain at times.

Two, there are times when I feel I need to go shortly after having gone. Sometimes it is a dribble, other times it is substantial. Oddly enough it tends to happen most when I'm working in the kitchen. One time making breakfast I had to stop what I was doing 5 times to go. Very annoying. But it comes and goes. Most of the time I don't have this problem.

Runny Nose (Rhinorrhea)


This is one symptom many doctors are not even aware of. Studies have shown that it affects around 50% of PD patients. It doesn't appear to be due to medications, but the disease itself. It too can be one of the early symptoms.

I first experienced this in September of 2012, shortly before my difficulty with typing set in. I caught what I believed was a cold, but after the cold symptoms disappeared, the runny nose stayed and has never gone totally away. At times it has been better, but currently I blow my nose several times a day.

Incidentally, earlier in 2012 I began having a chronic problem with boils. I discovered it was caused by an infection in the sinus cavities. After applying an antibiotic ointment for a period of time, the boils stopped. It wasn't long after that when the dystonia in the left hand began.

My doctor said the symptoms weren't related, that I likely had developed allergies and prescribed an antihistamine. It wasn't until last year that I discovered the above article and the link between the two.

Certain nasal sprays have reportedly helped.


Bradykinesia


This refers to slowness of movement and reduced movement. Unlike other symptoms of PD, this one is present in all cases. The most common examples are lack of swing in an arm while walking, slowness to initiate movements, and small handwriting.

I've experienced this symptom as well. My left arm doesn't swing well unless I consciously force it. My handwriting does have a tendency to shrink in size. There are times I feel like I'm moving through molasses and I'm slow to respond to stimuli.

I believe my medication has helped with this some, but it hasn't gone away.

Blank Face


This was an early symptom my brother noticed. Many PD patients tend to have an expressionless face, like they're not all there. It was also one of the first symptoms my neurologist noticed upon my first visit.

The important thing to know is that just because someone with PD has a blank face, it doesn't mean they've checked out. It is simply one symptom of PD where facial muscles have lost control.


Drooling


Nothing like drooling to make you feel you're reverting to your baby days. But it is a common symptom of PD. Obviously a little embarrassing in public.

I did have a period where I kept catching drool trying to escape from my mouth. My medications have kept it under control thus far, so you're not likely to see me drooling any time soon. But as medications become less effective, I'm sure it will be part of my future.


Dementia


Around 60% of PD patients experience dementia. Dementia isn't merely forgetting things, but loss of ability to recognize people or events, confusion in thinking, loss of cognitive functions, and hallucinations, among others.

To date, while I think some of my thinking processes have slowed, I've not exhibited any signs of dementia. But it tends to manifest itself in the later stages of PD, so I'm by no means out of the woods. Of the symptoms, this is probably the one I fear the most, not just for me, but for my wife who would be taking care of me.

So far, so good. Still a lot of this journey left to travel, though. All in God's hands.


Swallowing


Difficulty swallowing correctly is a fairly common PD symptom. Not so much in being able to swallow, but being able to swallow without getting liquid into your lungs. The flap that should cover the windpipe when you swallow doesn't work as expected.

One common result of this in advanced cases is the risk of pneumonia, and with it, possible death.

Normally I don't experience this. The only exception is when swallowing pills. It is common at least once when taking my supplements to get water down my windpipe. I've yet to have any problem with normal drinking, but it is likely a problem I'll deal with in the future.


Sleep Disruption


Many PD patients experience problems with sleeping. Common is the presence of tremors and dystonia pain makes falling asleep hard. Once asleep, those tend to disappear. It is the getting to sleep that can be a problem.

Another common sleep problem is the need to frequently go to the bathroom. Many PD patients find themselves waking up in the middle of the night frequently due to this. Then if symptoms make falling back asleep hard, it is a double whammy.

Likewise, some experience the opposite. Due to lack of energy some feel a need to sleep more than usual, leaving little time for productive task completion.

There are also studies showing that PD can negatively affect REM sleep, making one feel less rested after a night of sleep.

To date, I've rarely had trouble getting to sleep and getting enough. I've always been a good sleeper. So to date, I've escaped this symptom.


Weak Muscles



Frequently, PD tends to weaken the affected muscles. As the disease progresses, it gets worse.

I've noticed this to a degree. I find opening packages or unscrewing lids from jars to be much harder than it has been in the past. Scissors have become my best friend in that regard. I can still lift a decent amount of weight, but I've noticed in my left arm that ability has been reduced.

I've been doing more resistance exercises of late to help with that issue.


Balance Issues


Another critical problem among many PD patients is balance issues. As noted above, this is especially critical in stage 3 of the disease, when falling becomes more of a threat. At each visit, my neurologist ask if I've had any incidents of falling in the past few months. As I mentioned at the beginning, falling is one of the main ways PD patients experience injury, life-threatening complications, or even death.

I can tell my balance has been affected. I'm a little more unsteady on my feet than I used to be. To date, though, I've not had any real falls due to this. The only one that could be attributed to it, and it was more a matter of getting my feet tangled in a vacuum cleaner hose, was a slow, controlled fall, in part due to the table I tried to steady myself with not staying put, but slowly scooting out.

During Yoga and Pilates, we do some balance exercises. I currently find these difficult not to end up putting my foot down to keep from falling. I'm doing Tai Chi which is known for helping with this problem. Looks like when I get to phase 3, it will be an issue, unless my work now can head it off or reduce it. We'll see.

Summary


As I said, the above list isn't exhaustive. Each person may have other symptoms not listed. I may have forgotten even some of my own symptoms to mention. However, the above list should help to give you a clearer picture of what many PD patients face with this disease. It isn't just tremors that are the issue, but a whole range of issues.

My treatment plan involves exercise (currently Zumba, Pilates, Yoga, Tia Chi, lifting weights, and swimming), good nutrition, and a combination of supplements and prescribed medications. My symptoms would be much worse without them.

Feel free to subscribe to this blog (top right) using either RSS feed or email, if you wish to follow my journey with this disease. Thanks for reading.