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.