What Causes Parkinson's Disease

“To date, despite decades of intensive study the causes of Parkinson’s remain unknown. Many experts think that the disease is caused by a combination of genetic and environmental factors, which may vary from person to person.” From the PD Foundation web site.

The Environment

Why me Lord? What have I done to so offend you? Was it the drugs when I was young? So I tried a few. What’s the big deal? They are even making some of them legal now and prescribing it medically. Do we pay later in life for the excesses of youth? No fair. We were young and free and happy to be alive at a great time. I know I’m not “perfect and upright” like Job but I can understand why he was just a wee bit upset. How have I so offended you as to deserve PD? “Teach me, and I will hold my tongue: and cause me to understand.”

Environmental causes 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 to develop Parkinson’s 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.

Genetics

Is it genetic? Did I inherit PD from my parents? They would be horrified. They were decent people and good parents. It’s the last thing they would have wanted. Am I going to pass this on to my children? I know you can’t argue with God but let me complain a little. Isn't there any wiggle room with heredity? Holy double helix, what is natural selection thinking? It’s bad enough that I have PD. No parent wants to pass disease on to their children. “Therefore I will not refrain my mouth. I will speak in the anguish of my spirit. I will complain in the bitterness of my soul.”

There are causal genes and associated genes. Causal genes occur in 1 - 2% of PD 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, and those with neither type gene may get PD due to environmental causes. 4 - 9% (the numbers vary) 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 exposures can trigger 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. As of now though, “Man that is born of a woman is of few days and full of trouble.” Svet gornisht helfen, there is no help for it.

Joanna's Parkinson's Story

I invited a few friends to write posts because each person’s PD story is different and we learn from each other. The following was written by my friend Joanna. She was diagnosed with Parkinson’s in 2013. Her title for this post is Believing. I call it Positive Thinking.

In late spring of 2013, I found myself in a new phase of my life’s journey with the uninvited companion of Parkinson’s.  I decided we needed to accept each other and find some kind of peace.  I would do my best to learn whatever it brought into my path, but I would never let it take over.  And if I could discourage an extended stay, I would be delighted.  My first line of action was to let everyone in my circle of family and friends know about this change for me.  The support I asked for was to point me in the direction of anything that would make me laugh – movies, jokes, books, TV shows, cartoons.  This gave them a way to help me without eliciting a pity party.  

Laughter is healing. I learned this from Norman Cousins when I was in my twenties.  Now it’s a scientific fact and I can join in proving it.  (Confession:  I spent a lot of my life until my 50s often depressed and stressed, so I’m a latecomer to this practice.)  My primary healing strategy is to insure that I have as much joy in my life as possible.  It isn’t easy by a long shot - when I can’t sleep or when I unwittingly settle into despair and discouragement, old habit trails; when my body won’t function the way I want it to – fumbling with buttons, tremoring multiple letters as I type a message.  I can easily succumb to a sense of powerlessness, allowing negativity to finds its niche.  To counter this requires vigilance.  I stay acutely awake to my emotions so I can guide them back to joy.  Sometimes, it’s as simple as reminding myself of what I treasure in my life, of the sunshine or wisps of fog, of my family with all its foibles, of my good friends, old and new, for the birds at dawn.  Other times I am grateful that what the doctors call progression of this dis-ease is slow and it surfaced when I was closer to 70.  And then again, some of my symptoms can also be ascribed to normal aging in a body that has rarely experienced regular exercise.  It’s all a matter of perspective.  

When my constellation of symptoms – loss of smell, dizzying low blood pressure, creeping stiffness, fatigue and tremors – was named as Parkinson’s, I actually was relieved.  I realized it could be much worse.  With a name, I could begin a search to understand my options and choose how to deal with it.  My biggest relief was accepting low blood pressure medications to minimize my swings and sways.  At first, I was willing to try some of the Parkinson’s meds, but they lowered my blood pressure even more and so had to stop.  Currently, I take 1 mg of Azilect. I have to confess it is mostly because I love the name. But I also like that it is preventive – supporting my fading dopamine to stay fully engaged for as long as possible.  When I first got my meds, I put them on my small altar and asked that they be blessed for their work with me.  I believe in calling on all the energies and spirits to join me in this healing journey, however this healing takes shape.  I may not get to a physical cure, but I’m definitely working for spiritual and emotional healing.

When I began my research, I was overwhelmed with the information available.  I had to stop for periods at a time.  It was depressing and left me dizzy and hopeless about sorting through it all.  I was intrigued by some of the stories, but not convinced one way or another; skepticism and suspicion a familial tendency.  My first move when learning I had this condition was to sign up for a Parkinson’s dance class.  My neurologist had wisely handed me this information along with drugs.  Dance took, the drugs did not!  I’m not a joiner by nature, but I sensed this was something I should pay attention to.  Choosing to do this would be positive action.  I would not be a victim.  And then, I fell in love with the class.  I felt great kinship and belonging.  And I had such fun, in touch with the little girl in me, that joyful and adventurous five year old.  

A few months into the diagnosis, a friend told me about Bianca Mollé and her cure from Parkinson’s following a regime of Qigong.  I knew about Qigong but never got myself into a class.  A friend in the dance class lent me a book by Mollé about her journey to Qigong.  He also strongly encouraged me to start with a 10 day retreat.  Realizing the powers that be were guiding me to this exploration, I took a leap of faith and signed up for my first retreat, with four more to come over the ensuing years.  I am deeply grateful I took this leap.  Zhineng (Wisdom Healing) Qigong has given me a framework to understand my body; a non-medical approach to healing and how to be pro active at home in managing my health.  To be perfectly honest, I struggle with the discipline of routines, so I’m off-and-on the qigong practice wagon, as my life’s rhythms shift and change.  But it’s given me the foundation I was looking for, an approach to living and such a deeper understanding of who I am in this incredible universe.  It is with me everyday.  Fellow Parkinson’s seekers at my retreats also told me of Howard Shifke’s website and his recovery from Parkinson’s.  Though I have not followed his recipe, it too includes qigong.  I enjoy checking into his blog periodically for a shot of his wisdom and encouragement.  I’ve discovered many informational sites, but can only take in so much information at a time.   I will periodically read mailings from Parkinson’s groups involved in medical research.  I am happy to participate as a guinea pig in non-drug research.  But I don’t want to make this my life’s obsession. 

Knowing myself, I cannot commit to an unrelenting and rigid program of activities uni-focused on Parkinson’s recovery – be they walking, boxing, ballroom dancing, biking, yoga, qigong.  I want to enjoy my life without heavy regimentation that serves as a constant reminder.  I may get to some of these activities eventually.  I know that when I do Qigong, my body feels great.  Resting also makes me feel good.  Sometimes, I even forget I have this condition.  I can laugh at the challenge of carrying a cup of coffee across a room without splashing, too much.  My laughter brings me energy, lightness of being, improved balance, more dopamine for the brain (even if not directly into the substantia nigra where tremors et al originate).  

Living well is the challenge, my goal.  Dying with a happy heart, with grace and joy is my destination…regardless of what condition I may have.  For me, the most important task is to go with what life presents with no illusion that I can be in control of anything more than my attitude and approach.   I do not fear death.  I fear a life not lived.  That Parkinson’s has happened along is part of what I deal with everyday – some days better, some days not so better.   But I am constantly learning about myself and that’s about as alive as one can be.  

We each have to find what works for us.  That’s the beauty of this condition.  The challenge is stepping up to our uniqueness and enjoying our life in all its dimensions of good, bad and brutally ugly.  I live with the paradoxes.  There is no other choice.

Parkinson's And Death

A Washington University School of Medicine study of 138,000 Medicare beneficiaries diagnosed with Parkinson’s in 2002 found that 64 percent died within six years of diagnosis. “After adjusting the data for age, race, and sex, people with Parkinson’s had a nearly four times greater risk of death than people with no disease and nearly double the risk of death than for those living with other common diseases such as colorectal cancer, stroke and ischemic heart disease.  People with Parkinson’s had nearly the same risk of death as those who had experienced a heart attack or suffered a hip fracture.” The Parkinson’s Disease Foundation website.

I’m sure that my beliefs about death will change as I continue to age and get closer to dying. So why write about it? It took Parkinson’s to make me accept that I am going to die. It’s not that I thought I was immortal. I just didn’t spend a lot of time thinking about death. Death and dying would come into my mind but I couldn’t wrap my mind around it. I would just stop thinking about it. Since my Parkinson’s progressed I fully accept that I am going to die. It was not something I thought much about. I was aware of death but only as an elusive shadow in my mind. It was there but not there. I am not sure what that means but the possibility of death now exists for me. Death. The D is strong, definite. The TH is soft, lingers for a moment then ends completely. Death. I hear the word and now consider it. Life ends. Don’t misunderstand me. I am not attracted to it or looking forward to dying. I am not particularly worried about it or depressed. My attitude is pretty good but I now know death exists. It is there.

Does Parkinson’s kill you? Here is some medical mumbo jumbo. Parkinson’s “itself is not fatal. However, related complications can reduce life expectancy.” Parkinson’s doesn’t kill you but “Patients with PD have a somewhat shorter life span compared with healthy individuals that belong to the same age group.” Or how about “While Parkinson’s does not directly result in a terminal diagnosis, as symptoms worsen, complications can arise, threatening the patient’s health sometimes becoming fatal.” Despite their own studies and statements, the medical profession continues to claim that Parkinson’s doesn’t kill you. Nonsense was the common response of almost every PWP I talked to. So what is the disconnect here?

Do life insurance rates go up? Yes. Does life expectancy go down? Yes. Does end stage Parkinson’s exist? Yes. Can you get long term care insurance if you are diagnosed with PD? No. The Centers for Disease Control (CDC) states that complications from PD is the 14th leading cause of death in the United States. My answer. PD chips away at your life a little more each day and finally kills you and even if it doesn’t kill you, PD is a life sentence without chance of parole. This may be hard to take but living with Parkinson’s seemed to clear my mind, strengthen me to see things as they are, and accept the reality of what is. 

Parkinson’s is a great teacher. It prepares us for death. We learn to see death as an end to suffering. An escape from the progressive torment of PD. So yes, PD does kill you but it is comforting to know that there is an end to the misery of Parkinson’s, a way out. I am not looking forward to dying but probably won’t rage against it and instead be more willing to go gently into that good night.

Parkinson's And Sinemet

My PWP friends often discuss their meds: are they working or not, should they take more or less, stop completely or try a new one. According to the AMA one-quarter of all new prescriptions are never filled and patients do not take their medications 50 percent of the time. Most non adherence is intentional. People decide not to take their medicine based on their knowledge, experience, concerns, and beliefs. The main reason is fear. They are afraid of potential side effects and believe that meds cause problems. Based on talking to PWP friends I believe another reason is because doctors often don’t fully explain why they are prescribing that specific drug, the importance of taking it, the benefits of it, the risks and the possible side effects. About 75% of the PWP I know do not take their meds as the doctor prescribed. They take less, or more, adjust it to how they feel each day, or rely on “natural” remedies

Sinemet (Madopar in the EU), a combination of levodopa and carbidopa (benserazide in the EU) is used to treat Parkinson’s disease symptoms such as tremors, stiffness, and difficulty moving. PD is believed to be caused by too little dopamine in the brain. Levodopa changes into dopamine in the brain, helping to control movement. Carbidopa prevents the breakdown of levodopa in the bloodstream so more levodopa can reach the brain. Sinemet has been the gold standard drug for Parkinson’s for 25 years. It is even on the World Health Organization's List of Essential Medicines but it doesn’t work for everyone. One doctor I saw put it at 50%. It also has side effects. Reading the list is scary. To take or not to take Sinemet that is the question. The easy answer is if it works for you take it. If it doesn’t don’t. So the real question is how to tell if it works for you and is the risk of possible side effects worth the benefits.

A friend was recently prescribed Sinemet by her doctor. She was  diagnosed with Parkinson’s three years ago and has worked hard with alternative therapies to control her PD. She has a noticeable tremor in one hand and is having trouble sleeping. She seems fairly healthy and happy but when she told her doctor that it was getting harder to perform daily activities like dressing and caring for herself he suggested she start taking Sinemet. Now she finds herself looking at the bottle and trying to decide whether or not to start taking the pills.

Her first thoughts are I don’t want to have to take this for the rest of my life and she is worried about the possible side effects down the road. After a month of indecision she says she will give it a chance and see if it improves her quality of life but is waiting for the right moment to begin. If there isn’t noticeable improvement after a few weeks she will stop. 

Three months later she finally pulled the trigger and started taking Sinemet and became dizzy and confused, lost stability and stumbled, and wanted to stay in bed and sleep all the time. She contacted her doctor who replied, “Sounds like you feel worse on the drug, not better. Sounds very predictable, so I would stop the carbidopa/levodopa. Unfortunately some people have this "sleepy dopey" effect. Often likely associated with blood pressure drops.” To which she says, ”So I am free!! I feel like I dodged a life sentence and can get back to my alternative efforts. I was so deliriously happy, I stayed awake all night on a high of joy!! Now when I droop, I can't blame meds!! Also will need to get more disciplined overall since meds don't seem a viable fall back position. Oh well!!” 

Another friend has been trying to decide whether or not to increase her Sinemet because her tremors have gotten worse. Her neurologist said she should take as much Sinemet as necessary to keep ahead of the symptoms but she is worried about the side effects specifically the dyskinesia. She finally decided to increase her dose because “all I have is now and I want to enjoy my life.” She sees it as if she is deficient in an essential nutrient that Sinemet supplies much like taking a vitamin pill for a vitamin deficiency. The increased dose is helping her tremors, she feels stronger, is more energetic, more able to participate in the day so that she is much happier and at times even forgets she has PD. She “loves” the improvement.

I was prescribed Sinemet but didn’t take it for the first three years. The disease developed slowly until I didn’t feel well. I then took it for a year but the PD seemed to accelerate and I wondered if Sinemet was making it worse. So I periodically take less or stop for a short time. I shake more when I stop, my body feels stiff and aches, and I am not as steady, but strangely I feel better over all and I am not sure if the discomfort is due to PD or due to coming off Sinemet and trying to kick the Sinemet habit. I discussed this with my doctor and he said that I should be taking more not less. It’s not that Sinemet is less effective over time, the Parkinson’s gets worse. I increased my dosage but didn’t feel much better so went back to taking less and I feel okay. So is Sinemet helping me or not? Sometimes it it helps with my symptoms and gives a mild feeling of well being but does it cause additional problems? The answer should be easy. Just follow your doctors advice but what if it is different for each person helping one, causing another problems, and having mixed results for a third. You think I’m confused. I know a doctor who has PD and he questions how to take his meds. So what's a poor PWP like me to do?

Parkinson's Bad Days

Sick As A Dog

What is a Parkinson’s bad day? A bad day is when I can’t get out of bed. A bad day is when I get out of bed but don’t have the energy to brush my teeth. If I can do those things but my legs are too tired to walk it’s a bad day. Pour the cereal in the bowl, ok. Do the dishes, forget about it. If I can just do the ordinary and necessary it’s an okay day. What is a good day? A good day is a joy and pleasure and provides stock to go on.

On bad days when the PD completely takes over I no longer fight it. I try to relax and let it have its way. I used to resist, push myself, get up and try to be active and fend it off. Now I sit in a chair looking out my window. I am up high and see hills and the open blue sky to the East. A university campus is to the North. Small boats sail between islands that dot the bay to the West. Students carrying books walk hurriedly by, a woman with a content smile lazily pushes a baby in a stroller, and the old jogger with the gray pony tail wearing only running shorts on a cold day checks his Fitbit. Technology won’t help you my friend. Your pace will continue to slow. There is nothing you can do. We are born dependent, cared for by others, then grow and learn and spread our wings and sometimes experience happiness and pleasure and accomplish great things but our wings melt with failing health and the inescapability of age and we learn the meaning off words like Parkinson’s, bradykinesia, Sinemet, retropulsion, dopamine, tremors, dystonia, rigidity, anxiety, depression.

So what is the answer. What to do in the face of inevitability? I have no answer. There is no answer except to get through the bad days as well as possible and appreciate the good days. Go outside and join the flow. Continue to learn what life has in store. Cherish your family and friends and those you love and try to be as healthy and happy as possible.