Parkinson's And Happiness

Before I had PD I was not what you would call an overly happy person, someone who walks around with a smile on his face singing don’t worry be happy, but I was okay. I’ve changed. It seems hard to believe but even though Parkinson’s is my new normal I am now more or less happy. PD has been with me seven years now and although I keep wishing it would leave, it seems to have found a home in me, settled in for the long run, and doesn’t show any sign of wanting to go away. It is more noticeable and affecting me more this year. My symptoms (tremor, fatigue, balance) are worse. It is harder to accomplish simple daily tasks (bathing and dressing), and some days are pure misery. My comfort zone and world are shrinking. I don’’t want to travel and hesitate to take even short day trips. I am less comfortable being with people who don’t have PD and more comfortable with people who do. And yet, somehow I am okay. I am getting things done, interacting with people, enjoy being alive, and even laugh and smile and have a sense of well being once in a while. We know PD is brutal but could it have helped me become a happier and more positive person?

I am involved with the PD community and know a number of people that have the disease. Even though there is no cure and they are aware that their symptoms are going to get worse they are, in general, no less happy or more depressed than people who don’t have the disease. When we get together one would think that with that much suffering and misery in the room it would be a fairly gloomy gathering but it’s not. We are happy to see each other and be together. There is a lot of laughter and joy and the sense of being part of a special community.

I really don’t know what causes some people to be happy and others not. I do know that there are four primary chemicals in the brain that effect happiness: dopamine, oxytocin, serotonin, and endorphins. You would think people with PD would be miserable due to a lack of dopamine. Instead, while not exactly bubbling over with joy, a number of people with PD have told me they have become a more positive person since getting the disease. At first I thought they were hitting the levodopa a little too hard and getting high from their meds but then I realized that I had become a slightly more positive person as well. 

There is something special about people with Parkinson’s and the PD community. It is not just that we have an in common shared experience that bonds us together. Knowing that a person has PD makes them more interesting to me. I want to know everything about what the disease is doing to them and what they are doing to cope with it. An important factor in fighting PD is being part of an understanding and supportive community. 50% of PWP experience depression as a symptom but they tell me that they are usually okay when with the PD community. Those involved with the PD community seem to be doing better than those facing it alone. I could be having a bad day and when I get together with other PWP my symptoms lessen. Sharing your discomfort with others that understand it seems to lessen pain and defuse it a little. Avoid isolation. Don’t face it alone.

Writing about PD is my attempt to understand and define what is unique and special about Parkinson’s and how to cope with it. Parkinson’s changes us. Taking an active part in PD community informs and strengthens us. Why do I have a sense of well being and that I am part of a special community? Every once in a while when writing about PD or being with other PWP I’ve had glimpses and hints but haven’t found the answer yet. I will let you know when I do. Let me know if you find it first.

Divorcing Parkinson's

Dear Parkinson’s,

Listen Parkinson’s, I’ve been living with you for seven years now and I still don’t understand you. I know that PD is a neurodegenerative brain disorder that affects dopamine producing neurons that transmit signals between the brain and nerve cells but what I am trying to get a grasp on is what you are doing to me physically and emotionally. I really don’t understand. I should, as we have been living together for a long time. Sometimes I am okay being with you and then without warning and for no reason you hit me with a new symptom or a major case of the PD blues. I had a hard time getting dressed yesterday. Today i am exercising and humming a happy tune. Talk about inconsistency.

I talked to my PD friends even though I know we are snowflakes, no two alike and that each of us has a personal PD. They don’t understand either. All we want to know is what each day will be like and how you will progress over time so we can best prepare for the future and be comfortable having you around. But no, you are inconsistent and keep surprising me with new symptoms.

Putting up with you is tough. You were okay when we first met and it was only tremors in my right hand but you changed. You spread the tremors to the rest of my body, made it hard to walk, messed up my posture, and upset my balance. Then you introduced fatigue, anxiety, insomnia and the other non motor symptoms into our relationship and that was too much. And just when I am ready to give up, I have a good day and remember how it used to be when we first met and you weren’t too bad and I thought I could live with you. 

I try to prepare but don’t understand how you decide which symptoms to hit me with for the day. Will it be increased tremors, or really bad balance, or over powering fatigue, or by some miracle surprise will I be okay for the day. Then there is the intensity: small, medium, large, or the lay me out extra large full misery. So I sought professional help but instead of improving, you got progressively worse with time. I have to take drugs just to put up with you and get through the day.

I tried my hardest to live with you but you only got worse. I’ve had enough. I want a divorce. I no longer want you in my life. No more sleepless nights, no more tremors, no more falling, no more stress, no more Parkinson’s. I’m contacting my neurologist to see what my options are. You will be hearing from us.

Sincerely,

Peter

Parkinson's And Depression

Who me depressed? Are you kidding? Why would I be depressed just because I have an incurable disease that makes me feel miserable and is going to get progressively worse with time? What is there to be depressed about?

Medically, depression is defined as a mood disorder characterized by a persistently low mood and a feeling of sadness and loss of interest that lasts longer than two weeks. Additional symptoms such as feeling worthless, weight loss or gain and change of appetite, lethargy or fatigue or loss of energy, inability to concentrate, and thoughts of death or suicide may also be present and help to confirm the diagnosis. 

50% of PWP suffer from depression as compared to 5% of the US population. Additionally, 40% of PWP have an anxiety disorder. The Parkinson’s Foundation states that depression and anxiety taken together has a greater impact on the health of PWP than do the more noticeable physical motor symptoms that define PD.

Depression is so prevalent in PD that doctors now believe that depression may actually be a symptom of PD possibly rooted in the way the disease affects the brain. PD causes changes in areas of the brain that produce dopamine, norepinephrine and serotonin — chemicals that are involved in regulating mood, energy, motivation, appetite and sleep. In fact, the same pathways that create dopamine in the brain also create serotonin which impacts depression. PWP have an imbalance of neurotransmitters (brain chemicals) that regulate mood which is now thought to play a major role in the development of the disease. Researchers believe that many PWP experience depression or anxiety two to five years before physical motor symptoms appear and the diagnosis of PD is apparent. This means that depression is not simply a psychological reaction to the illness. It is a chemical imbalance in the brain and part of the underlying disease process. It's a double whammy. Depression can make PD symptoms worse and PD can intensify depression.  

A comprehensive approach consisting of medication, counseling, exercise and social support is most often recommended to cope with depression. Social isolation and the lack of a supportive social network can intensify depression. Don’t isolate yourself. Become part of the PD community. Other PWP understand what you are going through. Learn all you can about PD and depression so you understand and deal with what it is doing to you. Physical exercise helps. Make plans to do at least one small activity each day. Do not make decisions late at night. Wait for the light of day. Don’t get too high it’s a long way down. Don’t get too low it’s an even longer way up. Attitude is everything. Unlike PD, depression can be cured. Don’t hide it. Talk to your doctor if you need to. Meds and cognitive therapy can help. There is help out there. Get it if you need it.

A Parkinson's Caregiver's Story

Caregivers are an important part of the PD community. Their praise  is not sung enough. The following was written by my friend Amy. Her husband was diagnosed with Parkinson’s in 2013. I asked her to write this because she once told me that she feels privileged to be part of this with Mike.

“Expect the unexpected.” This is the motto of the Experiment in International Living, a program I was part of when I was seventeen and living with a family in Sweden.  As a teenager and young adult, I interpreted this motto as a call to be adventurous, risk-taking, and prepared to welcome new challenges – embrace an unplanned, unpredictable life. It seemed to offer an exciting way to live.

I got married late in life at 43, and became a mom even later at 45.  Allowing myself to settle down and cherish a stable, fairly predictable life was actually quite wonderful.  I found Mike, my husband, a childhood friend.  We had grown up in a very close and safe cooperative community north of New York City. When Mike and I had our daughter, our family of three experienced a lot of fun and happiness, as well as life’s challenges, losses and hard times.  

Mike was diagnosed with Parkinson’s disease six years ago when he was 63. Our daughter was about to graduate from high school.  We both were shocked, frightened and heartbroken.  I knew about Parkinson’s as my father was diagnosed with PD when I was 26. He died when I was 52.

Parkinson’s is a weird illness – a real wild ride.  In our PD community, we say it’s a “snowflake” disease in that no two people experience the illness in exactly the same way.  I  soon discovered that Mike’s symptoms, level of functioning and moods could change from day to day and hour to hour; and my old motto, “expect the unexpected”, came back to me and became my new motto.  I am married to a brave, resilient, at times anxious, depressed or angry man – a PD warrior who is not afraid to ask for help when he needs it and can laugh as hard as he did prior to the diagnosis.  The challenge for me is to do my best to be as helpful and available without enabling him to be so dependent on me that we temporarily slip into the roles of mother and child.

I love to be spontaneous and also like to make plans.  Now, I’m constantly learning to let go of control and accept that, at times, plans will fall apart. We decide to meet friends for dinner and a movie.  We might end up doing both; or just one thing; or Mike is too sick to attend so I go alone; or we cancel.  All have happened.

We plan a trip, and maybe it happens as we had hoped; or Mike joins me but has to spend much time in bed; or he freezes and shuffles and possibly falls requiring that he sit in the transport chair while I push him;  or we cancel the trip; or I go without him and we get friends and family to stay with him and help him as much as he needs while I’m gone.  All have happened.

Here is some of what I have learned and am still learning:

1. Focus as much as possible on being in the present and capturing pleasurable moments as opposed to being torn apart by future possible scenarios, worries and fears.  For a part-time pessimist, worrywart and usual realist, this has been important work for me.  It has allowed me to really enjoy how much Mike and I laugh together, rage at politics together, adore live music, enjoy the beauty of nature and our home full of art, and being with our beloved daughter as well as our family and friends.
2. Accept what is. Research what can possibly be improved or changed, and then be active in bringing them into being.
3. Mike and I are partners.  We agree about encouraging him to do as much as he can for as long as he can. We work to maintain that delicate balance between dependency and independence, separateness and togetherness.
4. Be as patient, forgiving, accepting and honest of both myself and Mike about our feelings, needs and limits. Sometimes I feel sorry for myself. Sometimes I want to run away from the demands, limits and worries that this disease imposes on us. I mourn the loss of how it use to be. I try to accept that this is just part of the process…
5. Voice appreciation, gratitude and love for each other as much as you can.  This is a hard, at times lonely, journey we are each on. We can talk and listen to each other’s experiences, but each of us is alone in how we really feel, and what it is like for each of us.
6. No one, no matter how close they are to you, can fully grasp what the PD experience is like until they are in it.  I wish I had been more patient with, more understanding and supportive of my mom for all those years she dealt with my dad’s PD.
7. I am happy for Mike when he is able to pull it together to be fully present with others when we get together with friends. However, I feel very much alone and sad when we return home and he crashes, exhausted, energy spent, dyskenias running rampant and he is unable to engage with me or even with himself.
8. I do my best to encourage others to ask me or us what we need as opposed to assuming they know what is best for us. 

I am an extrovert, and community has always been important to me. I am beyond grateful that Mike introduced us to the PD community.  He began by attending the Dance for PD class, and came home saying “I found my people.” I later joined him in attending dance class, and this is where we eventually met Peter and several of the others who have written on Peter’s blog. We soon connected with the local PD Active group, which further opened doors to more classes for Mike and new deep friendships for both of us.  I once said in the dance class that I was very thankful for “the most wonderful community we never wanted to be part of.”

Today the sun is shining;  I hear birds chirping and children laughing outside.  Mike is napping downstairs.  Soon I’ll make dinner, turn on some music or MSNBC.  We’ll decide which series to stream for a few hours, take our respective medications, read, snuggle and sleep (hopefully without nightmares).  Tomorrow will be another unpredictable day, and I’ll do my best to navigate this life we’re living — striving for balance between dependence and independence, hardship and joy, frustration and acceptance. There is a lot of suffering out there – some less than ours and some much more. I accept the sunshine and sorrow of my life and always remember that good days are still possible.

Parkinson's Versus Parkinsonism

If you have it you have it but what exactly is it that you have. Snowflakes, no two alike, all different. Is Parkinson’s one disease or many and what is the difference between Parkinson’s and Parkinsonism?

Parkinson’s disease is a neurodegenerative brain disorder that affects dopamine producing neurons in the area of the brain called the substantia nigra. Dopamine is a neurotransmitter, a chemical that transmits signals between brain and nerve cells. It is partially responsible for making controlled movements in the body. Symptoms usually develop slowly over years and may differ from one person to another. The main physical symptoms are tremors, stiffness, slow movement, balance problems, and postural instability. A PWP may also experience a wide range of non-motor symptoms such as depression, fatigue, sleep disorders, mood disorders, sexual dysfunction, constipation, loss of smell, gastric problems, cognitive changes, and on and on. Symptoms usually develop slowly over a number of years and often don’t appear until 80% of your dopamine producing neurons are gone. You may have PD for years without knowing it.

Parkinsonism means looks like Parkinson’s. Parkinsonism refers to a group of neurological disorders, not all of which have been clearly defined or named, that cause movement problems similar to PD. A person who has Parkinsonism will also have another underlying disorder that causes additional neurological symptoms such as dementia. Dementia with Lewy Bodies is second only to Alzheimer’s as the most common cause of dementia in the elderly.

Several Parkinsonism symptoms are similar to PD symptoms: flexed posture, slow movement, stiffness and rigidity, small steps without arm swing, and problems with balance. It is called atypical Parkinson’s because it differs from PD in a few ways: there is often no tremor, both sides of the body are usually affected equally, levodopa and other PD meds and DBS may not work. People with Parkinsonism not only have problems producing dopamine but also have damaged or destroyed receptor cells that do not respond to dopamine. With Parkinson’s the dopamine producing neurons are depleted. With Parkinsonism both dopamine producing and receptor cells are damaged. Parkinsonism develops quickly while PD is usually slower although PD progresses faster the older you are. Parkinsonism treatment is determined by the plus disease.

There is no definitive test to detect Parkinson’s disease or Parkinsonism. A DatScan doesn’t differentiate because Parkinsonism has a loss of dopamine as does PD. So if Parkinson’s and Parkinsonism look, smell, and taste alike how do you tell them apart? Doctors say that they depend on a thorough medical history and a number of different movement tests but that is not completely true. The real test is if you respond positively to a dopamine drug it is diagnosed as PD, if not it is diagnosed as Parkinsonism because your receptors cells are damaged as well. 

What do you have? If you find this confusing you are not alone. Parkinson’s is often confused with Parkinsonism and they are sometimes misdiagnosed. One study estimated that doctors fail to diagnose or misdiagnose PD and Parkinsonism 35% of the time. What we do know is that a regular daily exercise program benefits both PD and Parkinsonism and may help slow the progression of the disease. Exercise is also important for maintaining muscle tone, strength, flexibility, and overall health. Both PD and Parkinsonism have no cure so doctors try to treat the symptoms that most affect each person’s quality of life. The diagnosis and treatment may need to be revised over time based on speed of disease progression, response to medications and other factors.

Parkinson's Subtypes

Snowflakes. That’s what we are. Parkinson’s snowflakes. No two people with PD alike. We know it and medical research has finally accepted what every person with Parkinson’s knows. The disease is unique to each of us. We each have our own set of symptoms, we progress at different rates and in different ways, and we respond differently to meds and treatments. The disease itself is a chameleon, changing and different every day. Each morning when I wake up I discover my symptoms for that day. Will it be tremors or fatigue, balance or dystonia, anxiety or … the list goes on. What will be will be. Then just when I think I have the day figured out and under control my symptoms change. What is going on here? The answer, Parkinson’s is not one disease, it is many, or really a disease with many different subtypes.

Researchers now believe that PD is not a single disease as has been previously thought and therefore treated with similar treatment for all, basically either Sinemet (levodopa), an agonist, or DBS. It is a disease with many different subtypes and should be treated as such. Think of it like cancer with its many subtypes based on genetic, biological and molecular differences needing customized medical treatment depending on the specific molecular subtype of the cancer.

"The time has come to ask what we should be doing differently” says Alberto Espay, MD, Department of Neurology at the University of Cincinnati College of Medicine and director of the Gardner Family Center for Parkinson’s Disease and Movement Disorders. "Medical science has made a global investment of $23 billion in therapies with the promise to slow down the progression of Parkinson's disease, and the 17 completed phase III clinical trials have yielded little more than disappointment. We need to ask whether the growing number of failed trials might be explained by our single-target and single-disease approach to drug development.”

We are entering the age of personalized precision medicine. That not everyones PD symptoms are the same and not everyone responds to the same therapies leads researchers to believe that there are many PD types or subsets that can best be benefitted by different therapies. A subtype is defined by a cluster of PWP that have the same molecular subtype of disease. The goal is to define and understand the molecular nature of each subtype and then develop a customized precision medicine approach that is rooted in systems biology to target each subtype. "The diagnosis of Parkinson's disease will be complete only when a biomarker profiling is capable of identifying the molecular subtypes of disease and suggest a disease-modifying treatment to apply.”

Seeing Parkinson's as a single disorder that involves dopamine-neuron degeneration helped develop treatments for symptoms such as tremor, balance, and rigidity that affect most PWP but did not help slow, modify, or cure the disease. Sub-typing the disease according to the presence of specific biomarkers would allow for the development and administration of personalized precision medicine based on subtype and the specific symptoms and molecular features of the disease. “Our patients can be divided into subtypes based on genetic, biological and molecular abnormalities. As a result, they will respond differently to different therapies" says Espay.
Sometimes thinking has to change to solve a problem. Common sense and experience tell us that Parkinson’s comes in different shapes and sizes and has many faces. Medical science now agrees and believes that customized precision medical therapy based on the biomarkers of each PD subtype is the future. Hopefully this acknowledgement will help find the way to prevent and cure the disease. May it come speedily and in our day.

Parkinson's Birthday 2019

And so it’s my birthday. Happy birthday to me. I am 78 years old. Happy three quarters of a century plus three to me. The world has changed. Colors are different, sounds are different, the landscape changed, and people are different. I don’t understand a lot of what I see and I feel different. Not old, just different. I’ve been through a lot. I mean this as a statement of fact not a complaint although I have suffered my share of slings and arrows, Parkinson’s being the latest and now my new normal. To see me is to know I have PD. At first I thought I could handle it but sometimes it has its way with me and developed a little faster than I would have liked. At those times I don’t have Parkinson’s, it has me. So I shake a little more and I’m having some problems with balance. The real change though is in the every day ordinary. It is harder to accomplish the simple daily tasks of bathing, dressing, cooking, cleaning. It seems like much of my time is spent negotiating the mechanics of the ordinary. And yet somehow I am okay. I do the daily necessary, enjoy being with family and friends, and appreciate being alive.

PD is seen as a physical disease, defined as a movement disorder, but it really is a fight for the control of the mind and emotions. A healthy mind is the greatest asset in fighting the disease. It helps me accept the reality of what is, neither making more of the disease nor less. I will probably lose the physical battle with PD even though I exercise every day but I am not giving up the fight for my mind and emotional well being. I am a proud member of the Parkinson’s community.

I don’t know if I should credit PD or thank aging or both or neither but I now care less about what others think of me. Anger, bitterness, and resentment about things that happened to me in the past is gone but I don’t think I will ever get over the harm I’ve caused others, the wrongs I did to people. Most of my failures and missed opportunities no longer matter. It no longer gnaws at me and there is no one to blame. I am mellowing as I age and don’t worry about what I don’t have. I’m more thankful for what I do have. I accept the reality of what is, neither sugarcoating what is nor wanting what isn’t.

I am at a delicate balance point, thinking equally about the past and considering my future. I have given up trying to still be who I was and am instead trying to understand what I have become. Life changes in an instant. So many people here one day and now gone. Appreciate what you have while you still have it. Don’t take anything for granted. I no longer rush through things trying to get to next. I relax more into the now of what I am doing. I have no idea how much time I have left so I have no intention of rushing through it.

Life is what happens when you are with other people. Thank you to my family. You are what I care about most in life. Thank you to friends. We had wonderful times and you made life more interesting and enjoyable. Thank you to those I loved and those who loved me. You made life special. I still see of each of you in the glow of the unique light that love bathes a person in.

The sense of me being old seems odd to my children just as it does to me. I know they are troubled by how they see me: Parkinson’s, doctors, meds, slightly stooped, head hanging down, wobbles when walks. What happened to their father the now diminished giant who had once been so important in their lives? Where did the moment of his greatness go? Healthy and vibrant, then like a switch thrown in the dead of night you find yourself on the other side suddenly old. Life changes in an instant and the world continues without you.

Let’s sing the song. Happy birthday to you. All things must pass. Happy birthday to you. All things must pass someday. Happy birthday dear Peter. The future becomes the present and slowly but too quickly fades into the past. Happy birthday to you. Time doesn’t pass, People pass and in time become only a memory. So make a wish and blow all the candles out and maybe, just maybe, your wish will come true.

Why I Write About Parkinson's

We live in our experience. Our thoughts are bounded by our vocabulary and language. We do what we know. We come to know the things we do. Writing is a search for meaning. The reader finds meaning by reading the words. The writer from writing. I blog so that even though I am living with Parkinson’s I am not confined by it. Parkinson’s is a loss of function. Writing creates new meaning and purpose. PD dominates my experience. Writing distances me and gives me some relief. Writing is thinking. It gives form to thought, deepening my understanding of what I am going through by making me express my thoughts clearly. It allows me to see PD with an objective eye and helps me cope with it. Creativity makes misery bearable. It helps get the PD out of me. We live in what we make of the world. Writing is a stroll through my mind that allows me to remember where I’ve been, understand where I am, and see where I am going. 

I, at first, started blogging because it was an easy and convenient way to keep my family, living in different states and countries, updated as to what was happening with my Parkinson’s. It was easier to write about PD and let them read it when they wanted than to discuss it with each of them separately. Since it was meant for my family, my first posts were informative: diagnosis, symptoms, and what I do to get by.

I was surprised that people I didn’t know began to read my blog so I started writing with a wider audience in mind. Blogging served as my coming out that I had Parkinson’s and helped get me out of the PD medical closet. One approach to writing is to concentrate on meaning and the craft of writing. Blogging lends itself to informality and getting a feeling for the person writing the words, the sense of a person not a writer, talking to the reader. I found that strangers were reading the blog and enjoyed what I was writing. People told me they learned from what I wrote, others said they laughed, and some cried. They seemed to want to read more so I started thinking about what would be of interest to the PD community and began to research and learn about PD in order to become knowledgeable and develop subject matter. The more I learned the better I understood what PD was doing to me and what I had to do to get by.

Then I had my first thousand page hits and the old ego came into play. I was being read in more than 30 different countries, glad to see Canada and England and happily surprised by Russia, Romania, Poland, Latvia and the Ukraine. Each day I would log in and feel good when I saw a new country and then South Korea, Japan, and Singapore picked me up. Imagine that, how did they find me in Burma and Bangladesh and Iraq and Iran? The internet is amazing.

I now write for the pure pleasure of it. To have an idea and then try to express it in words. To initially get it down on paper and then to shape it and watch it grow and take on form and meaning over time. To see where the writing leads me and where I lead it. To more deeply understand something by writing about it. To walk away from it and think about it and then go back to it and work on it again and to sometimes get it right. To be surprised by what writing one word after another finally becomes. Then to let it go and yes as soon as I publish it to see the mistakes I made and how I could improve it. Writing is written with a reader in mind and posted to be read. Life happens when you connect with people. So finally I wonder how it is received and what you, the reader, think.

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.