The Parkinson's Movie

Invasion Of The Dopamine Snatchers. It’s a horror movie perfect for drive-ins. Aliens invade and take control of your body, destroying neurons in your brain and harvesting your precious dopamine to take back to their planet. They may strike anyone, anywhere, anytime and there is no stopping them. Insidious, you don’t even know they are there until many years later and the damage is done. Quietly and gradually depleting your dopamine producing neurons for many years until they are 60 - 80% gone and only then do symptoms begin to appear. It could happen to anyone but they seem to target people in the same family and those that have had environmental exposure damage. The movie that dares to enter domain of the human brain and tell the truth about what happens when its neurons no longer produce dopamine.

How to tell if you have been invaded. Young and old look for the following signs and report them to your local neurologist although there is little your doctor can do to help you. The four main symptoms are tremor, bradykinesia (slow movement), rigidity, and postural instability. Tremor is the most noticeable symptom and loss of balance leading to falls the most dangerous.

Who is most likely to be attacked? Researchers think the disease is caused by a combination of genetic and environmental factors. Environmental means all causes that are not genetic. Age, the older you are the more your chances of getting PD. 1% of the population over 60, 0.001% under 45. It is not known why but men have a 50% higher risk than women. People who suffered traumatic head injuries, those exposed to toxic chemicals especially pesticides, and certain metals (manganese) and solvents have a higher incidence but there is no conclusive evidence that exposure to any single environmental factor acting alone can cause PD.

There are causal genes and associated genes. Causal genes occur in 1 - 2% of cases and guarantee that a person who lives long enough will develop PD without the influence of other genes or environmental factors. Associated genes increase the risk but do not develop PD on their own. A person with associated genes may never develop PD but is more likely to. They need to be combined with other genes or affected by the environment. Those with causal genes get PD if they live long enough, those with associated genes may or may not get it, those with neither type gene may get PD due to environmental causes. 4 - 9% of those that have a parent or sibling with PD get it. 15 - 25% who have any relative with the disease get it.

It is more complicated than just environmental or genetic factors. Most researchers believe it is their interaction. That is, a person’s genetic makeup will determine the effect of an environmental exposure. Genetics make you a candidate for PD and environmental exposure triggers it. In order to develop treatments to stop or reverse the disease scientists are working to identify the combinations of genes and environmental exposures that result in PD and researchers are looking for the genetic trigger that starts the cell death process in dopamine neurons.

Are there ways to prevent PD? There is no proven way to prevent PD. Some studies show that people who eat more fruits and veggies, high-fiber foods, fish, and omega-3 rich oils (the Mediterranean Diet) and who eat less red meat and dairy have a lower incidence of the disease. Reduced risk of developing the disease is also associated with smoking (yes smoking), caffeine, high vitamin D levels, exercise (everyone’s favorite), and greater physical activity.

Does the movie have a happy Hollywood ending? Not the current version. Doctors and researchers are fighting back but have made little progress in preventing, curing, or halting the progression of the disease. Maybe in the sequel, Revenge Of The Dopamine Eaters, hopefully coming soon. in which PWP, doctors, researchers, care givers, and the PD community join together to improve lives and defeat the dopamine snatchers. Our weapons are education, research, exercise, community, and a little help from our friends. 

What you can do. It is up to you to fight back. So much of how you fair with the disease is up to you. Be an active participant with your doctor to get the best comprehensive treatment plan to improve your quality of life and suffer as little as possible. Learn all you can about the disease so you can make intelligent decisions. Exercise as much as possible. Exercise is believed to slow the progression of the disease and also helps you feel better. Try to be active and engaged with life. Get involved with the PD community. Your local PD community is a wealth of information and support. Be good to yourself.

Parkinson's And Sleep

Insomnia. Just hearing the word frightens me. Sometimes I go through a rough patch and it’s happened again. I’ve joined the legion of the Parkinson’s can’t sleep at night sleepless. I get in bed, and although I am exhausted, sleep just doesn’t come. I’m not just tired, I am that special it is all I can do to barely make it to the bed Parkinson’s exhausted. So I get up and haunt the house during the midnight hours but have not yet begun to cruise the late night internet PD chat sites with the many PWP who can’t sleep.

I give up on sleeping in my bed and head for the couch which is tricky because I can’t walk at night. I have enough problems with walking and balance during the day. It is worse at night, hard to keep upright. I do the bent over crab crawl hanging on to one piece of furniture after another until I make to the couch which I thankfully sink into, sigh, yawn, close my tired eyes and sometimes gratefully fall asleep.

PD insomniacs you are not alone. 90% of PWP report sleep problems. They average 5 hours of sleep a night if lucky and wake up twice as often as those without PD. As with all PD symptoms, sleep is different for each of us. Some have trouble falling asleep, some say they don’t sleep at all, some sleep all day and night, some during the day and not at night. Then there is interrupted or fragmented sleep where you wake up every hour or so and may have trouble falling asleep again. Some have vivid dreams, some say they don’t dream. Some suffer from PD related Restless Leg Syndrome which makes sleep even more difficult. Take your pick they all are problems.

Just getting into bed is tricky for many PWP.  I do a version of the Fosbury Flop. Dick Fosbury was an athlete who revolutionized the high jump when he won the 1968 Olympic gold medal by going over the bar backwards and turning his body in mid air to land on his back. I go to the side of the bed, put one  knee on it, and do a flip and roll over so I land on my back. Getting comfortable in bed and getting out of bed are additional problems.

Sleep as we all know is crucial for health and has many benefits one of which is that PWP don’t shake while sleeping. Sleep gives the gift of a body at rest and replenishes me. Not sleeping at night not only affects my nights it affects the quality of my days as well. Lack of sleep makes my day time tremors, balance, posture, fatigue, and how I feel worse. It’s bad enough having PD. Not sleeping increases my symptoms and makes the disease even harder to handle.

There are many things you can do to help induce sleep. The problem is they are only best practices and may not work. Let your body know it is time to sleep by establishing a bed time routine and doing the same thing every night before going to bed. Relaxing meditation helps some people. Try to get bright natural light during the day so your body  knows it is time to sleep when it gets dark. Exercise during the day but not at night. No caffeine or stimulants after mid day. Limit liquid intake at night so you don’t have to wake up to urinate so often. Limit screens at night, especially interactive screens. Over the counter and natural sleep aids work for some people although I am not a fan of OTC meds and prefer going straight to the doctor and getting a prescription for the real thing. If you can’t sleep, get out of bed, give yourself a few minutes and then try again. Sleep, sweet refreshing sleep. Such a satisfying pleasure. How I miss you.

Parkinson's And Stress

Parkinson’s and stress are enemies. They don’t like each other and often bring out the worst in each other. Stress can cause PD, trigger the onset of PD, make PD symptoms worse, and conversely PD symptoms can increase stress. The Michael J. Fox website states that, “Chronic stress will increase the extent of brain cell loss in PD-associated brain structures. There is ample evidence that PD symptoms worsen during times of stress.” Parkinson’s is a neurological disease and stress and strong emotions can make neurological symptoms worse. 

What Is Stress?

Stress is the bodies reaction to any physical or emotional situation, positive or negative, that results in the release of a complex mix of hormones and chemicals such as epinephrine (adrenaline), cortisol and norepinephrine which cause an “adrenaline rush” that increases blood pressure and pulse rate, faster breathing, increased blood flow to the muscles, and shuts down unnecessary bodily functions such as digestion. Theoretically this enables us to focus our attention so we can respond quickly to the event. You know it as the feeling that makes you want to jump out of your skin.

Does Stress Cause PD?

Stress causes many diseases: heart disease, stroke, high blood pressure, gastrointestinal problems, psychological problems are just a few. The impact of stress on PD is not yet fully understood but research indicates that stressful life events may increase the risk of Parkinson’s disease. Studies show that stress damages dopamine cells and that stress negatively affects dopamine synthesis and release. We also know that stress early in life affects brain development which leads researchers to believe that stress can cause Parkinson’s. 

Can Stress Trigger Initial Onset Of PD?

Some PD people I know trace the onset of symptoms to a specific stressful event. I remember the incident where my symptoms first kicked in although I didn’t know at the time that it was PD. I was waiting in line in a grocery store and someone cut in front of me. When I said something they became aggressive and I stupidly responded. After the incident my body began to shake and I’ve been shaking ever since.

Does Stress Make PD Symptoms Worse?

Of course it does. Every PWP knows from experience that stress makes their symptoms worse, especially tremors, freezing, balance, and anxiety. Not enough research has been done on stress and PD but it is known that stress plays a role in many neurodegenerative disorders and that chronic stress decreases dopamine levels. According to Dr. Amie Hiller, at the Oregon Health and Science University, “Our goal is to not only treat symptoms of PD, but to slow progression of the disease. Stress reduction is something we could think about to slow Parkinson’s disease progression.”

How To Reduce Stress.

Be aware of the things that stress you and try to avoid them. Give yourself permission to not do anything you don’t want to. You have PD. People will understand. Practice stress reduction breathing and meditation. Regular exercise. Go for walks. Don’t hesitate to ask your friendly doctor for a prescription for chill pills. Just knowing that you have them if you need them can help make you less anxious. I know it is not easy. Having Parkinson’s is stressful in itself.

Parkinson's And Levodopa

Until Levodopa (L-DOPA) was developed in the late 1960s, Parkinson’s was treated with a blur of mostly misguided treatments: electric shock therapy, surgery on different areas of the brain, bleeding, arsenic, morphine, and mercury. Dr. Parkinson recommended bloodletting from the neck and blistering of the skin while inserting pieces of burnt cork to cause infection. The side effects of these treatments were usually worse than whatever relief they gave.

Levodopa was first isolated in 1913 but thought to be biologically inactive until the 1960s when it became the gold standard for the treatment of PD symptoms. Levodopa was to Parkinson’s what the Beatles were to popular music. Since its FDA approval in 1970, Levodopa has revolutionized the management of Parkinson's disease symptoms. L-DOPA is metabolized into dopamine in the brain by an enzyme called aromatic L-amino acid decarboxylase (AADC). Dopamine cannot pass through the protective blood-brain barrier, but L-DOPA can. When L-DOPA is taken orally, a small amount passes into the brain and is converted into dopamine which may offer relief of some PD symptoms (tremors) for 2 - 4 hours.

However, the body presents many obstacles that limit the efficiency of oral L-DOPA therapy. AADC, exists outside the brain as well, which means that the majority of orally administered L-DOPA will be converted into dopamine before reaching the central nervous system. Therefore, L-DOPA is typically administered with an inhibitor of peripheral AADC, called Carbidopa. Carbidopa (or another AADC inhibitor such as benserazide in Europe) helps to preserve orally administered L-DOPA for conversion to dopamine in the brain. Sinemet is the brand name in the US for Levodopa and Carbidopa combined into one pill. Madopar, available outside the US, is levodopa with benserazide as the AADC inhibitor. Levodopa doesn’t cure, prevent, or stop the progression of PD but relieves some symptoms, mostly tremors, for some people.

Now for the bad news. There is a long list of possible Levodopa/Carbidopa side effect and their likelihood incases with long term use. 40% of users experience dyskinesia (involuntary, uncontrollable movements) motor fluctuations within 4 - 6 years. The pulsating effect of taking a number of levodopa pills every day that have an initial strong impact on the brain followed by a short half life is another problem. Lets see, I’ve taken 3 pills a day 365 days a year for 4 years. That’s 4380 brain shocks so far. Should I be worried yet? How many pills have you taken?

Are you experiencing any of these possible side effects: dyskinesia, hallucinations, mental and mood changes, confusion, depression, suicidal thoughts, worsening of tremors, fainting, dizziness, drowsiness, blurred vision, nausea, vomiting, dry mouth, loss of appetite, heartburn, diarrhea, constipation, muscle pain, numbness or tingly feeling, trouble sleeping. insomnia. strange dreams, skin rash, itching, headache, twitching, unusual strong urges and the list goes on. You get the picture.

A dermal patch, a subcutaneous pump, and controlled release tablets have been developed to deliver levodopa in a continuous regulated way without jolting the brain. Providing a more continuous and regulated supply of dopamine to the brain may result in improved control of PD symptoms and lessen side effects.

Currently most PD medications are taken orally. However, it takes time for oral medications to be absorbed by the body before they start to work. An inhaled powder form of levodopa, Inbrija, was approved by the FDA in December 2018. Self administered with an inhaler it reaches the brain faster than orally administered levodopa and provides rapid improvement of motor function to significantly reduce off time.

Levodopa is a protein building block so it competes for absorption with food. Therefore to be most effective Sinemet should not be taken until two hours after eating and one hour before. More Levodopa must be taken with time. Does it lose its effectiveness or is it because the disease gets worse or is it both. Several PWP friends have taken Sinemet for a long time (8+ years) and developed dyskinesia. They see it as a quality of life issue, take Sinemet and feel better now or prevent possible future problems. Many people experiment with dosage and timing. I know about 20 PWP who take Sinemet and only a few take it as prescribed by their doctor.

L-DOPA converted to dopamine is likely to remain the gold standard for the treatment of PD for the near future. According to the National Institutes of  Health “Of all agents, L-DOPA although the oldest, remains the most effective. However, l-DOPA's efficacy in advanced PD is significantly reduced.” In other words, Levodopa may become less effective and cause problems with long term use but it is the best therapy we now have for treatment of early Parkinson’s. Be happy if it helps you but be careful.

A Parkinson's Good Day

I had a good day today. After a series of not so good days I had a good day. Not good enough to make me want to sing Good Day Sunshine but a day good enough to happily hum a soft song. I was a little shaky in the morning but not too bad. Made breakfast and did my usual. Nothing different from any other day and then sometime mid afternoon I realized that I wasn’t sharking. No tremors and I felt pretty good. Dare I say I felt normal. No shakes, no fatigue, no misery, good gait, decent balance. No Parkinson’s. I don’t know how it happened or came about. It kind of snuck on me without me realizing it. What’s wrong with me? I mean what’s right with me. 

I tried but couldn’t understand why I was having a good day just as I sometimes don’t know why I have bad days. I know that if I don’t sleep, or am stressed, or overexert myself I may have a bad day but sometimes it seems to just happen on its own. I know what to avoid but how do you make a good day happen? Does PD have a mind of its own? Comes and goes as it pleases with no discernible rhyme or reason.

I remembered what it meant to be a body at rest. A wonderful feeling and memory from the past. I was excited. Could it be that I no longer shook, my tremors gone, my body from now on at rest. After all I had Isaac Newton’s mighty first law of motion in my favor. A body at rest will remain at rest unless an outside force acts on it. Later that day my tremors returned without me knowing why. Is Parkinson’s more powerful than Newton? I thought my body would stay at rest but I forgot that Newton also stated that for every action there is always an equal and opposite reaction. The relief was welcome while it lasted.

Some definitions here. A good day is a day with only minor manageable symptoms. An okay day means medium manageable physical symptoms. A bad day is the full PD onslaught, strong physical symptoms and mental misery.

Most days are somewhere between good and really bad and sometimes I can influence how I think of them. I don’t think I can turn a really bad day into a good day but sometimes I can make it not so bad. So much of how a person feels is up to them. I don’t mean you can turn a miserable day into a great day but you may be able to make it a little less bad. Influence a not so good day into becoming a not too bad day. Take a bit of the edge off it. Positive thinking is a mental attitude in which you expect good and favorable results by creating beneficial thoughts that are transformed into reality. It’s a two step process: think positive thoughts and then make them affect your mood. A positive mind looks for the good in any situation. I admit, easy to say, harder to do.

I am not going to give you a tutorial on how to think positive thoughts and how to turn thought into reality. There are many don’t worry be happy self help positive thinking guides and gurus to choose from. Take your pick. The point is you are in charge of and can control your thoughts to some degree. Try to think positive thoughts. I say try because it is not as easy as just breath deeply and do it but your thoughts do come from you. Don’t just wait for a good day to happen on its own. Do what you can to improve your day and make it better. One way is to think of things that make you happy and expect to feel good. What would make me happy is a cure for Parkinson’s and if I can’t have that I will settle for having a good day.