Treating Parkinson's

There are three main problems in treating Parkinson’s Disease. Everyone’s symptoms are 

different so everyone’s treatment plan is unique to them, the disease is progressive and only gets worse, and there is no cure.

There is no standard diagnostic test for PD only a collection of symptoms. There are four main motor symptoms - tremor, bradykinesia, rigidity, postural instability - and 10 or 11 secondary motor symptoms - freezing in place, unwanted acceleration, speech problems, micrographia (cramped handwriting that gets progressively smaller)- as well as 10 - 15 non motor symptoms - depression, anxiety, mood changes, fatigue, sleep problems, cognition problems, excessive saliva, etc. According to my neurologist, if you have three or more of the major symptoms you have PD.

Since everyone has a different collection of symptoms and each symptom shows to a different degree, the treatment for each person is different because the symptoms are what are addressed. Then the meds affect each of us differently. A med can help one person, make another hallucinate, and seem to have no affect on a third.

The real problem of course is that PD is progressive and there is no cure. It just gets worse. But in face of that many people with PD live their life as if they have the cure in their hands, they are the cure. They have taken the responsibility of improving their life upon themselves. They are not ignoring established PD medical practice. Seeing the doctor and taking pills is only one part of dealing with PD. I learned more about dealing with PD and managing my symptoms from fellow people with PD than I have from doctors. We are our own best resource. In fact, doctors seem genuinely interested in learning from me.

Most people with PD that I know are their own doctor making decisions as to how to best treat the disease. They consult with their friends in the PD community as well as their doctor. The latest research, how best to deal with and how to treat PD, is an ongoing active discussion topic among PWP.

There is always exciting news about possible cures and new treatments for Parkinson’s but everyday treatment is essentially the same since the 1960’s introduction of levodopa which is converted into dopamine in the brain. Modern research into gene therapy and stem cell treatments is promising but in 1817 in his “Essay On The Shaking Palsy” Dr. Parkinson’s predicted “Although, at present, uninformed as to the precise nature of the disease, still it ought not to be considered as one against which there exists no countervailing remedy. On the contrary, there appears to be sufficient reason for hoping that some remedial process may ere long be discovered, by which, at least, the progress of the disease may be stopped.” The good doctor described the disease well but had a little too much faith in the medical communities ability to stop the progression of or cure PD. It’s been 200 years and we are still uninformed as to the precise nature, there still is no cure, and nothing stops the progression of the disease. The best thing you can do is be healthy, take you meds as prescribed, exercise, and to enjoy and live your life.

Parkinson's And Chocolate

Parkinson’s has been known and studied for hundreds of years but in many ways not much is known about it especially how to prevent it, stop the progression of it, or cure the disease. Research is often contradictory. The latest uncertainty is about chocolate. Is it good for PD, is it bad for PD, or does not affect PD at all? Interesting fact, people with Parkinson’s seem to like and consume significantly more chocolate than people that don’t have PD even in people where consumption in the amount of other sweets is the same.

What is chocolate and why does it taste so good? The word “chocolate” comes from the Aztec language word xocolātl which is a combination of the words xococ (meaning ‘sour or bitter’), and ātl (‘water or drink’) because for most of it’s existence chocolate was consumed as a drink. Chocolate contains stimulants like phenylethylamine (B-PEA) and caffeine which give you a positive boost and the feel good chemical anandamine. Europeans added sugar and honey as sweeteners. The result is that nearly everyone likes it and the rest is history.

A study by Dresden University of Technology in Germany has suggested that eating dark chocolate on a daily basis could help ease symptoms of Parkinson's disease. It is believed that phenylethlamine, a cocoa compound, can increase the release of dopamine in the brain and help prevent PD symptoms like tremors. 

A word of warning though, the same phenylethlamine may be toxic to dopamine neurons. Some studies cautioned not to eat too much dark chocolate as it is one of the foods richest in B-phenethylamine which may actually cause Parkinson’s. B-PEA could lead to the production of hydroxyl radicals that stress dopamine producing areas of the brain and cause PD.

Other studies report that chocolate neither harms nor is beneficial for PD and that more research is needed. I would volunteer for that clinical trial. It would be a honey of a study and produce one sweet report. So what is a poor PWP to do? If you like chocolate eat it with pleasure.

New Non Invasive DBS

There are now two brain procedures that are FDA approved for use in Parkinson’s: deep brain stimulation (DBS) and non invasive high intensity focused ultrasound (FUS). Deep Brain Stimulation has been successfully used more than 160,000 times to treat people with movement disorders (Parkinson’s, essential tremors. dystonia), neurodegenerative disease (Alzheimer’s), neurological disorders (epilepsy), and increasingly for psychiatric disorders (depression, Tourette’s disease). DBS works by delivering constant electrical stimulation to problem areas of the brain similar in concept to a pacemaker for the heart. It involves implanting electrodes deep within the brain. The amount of stimulation delivered by the electrode is controlled by a pacemaker-like device placed under the skin in the chest. DBS is a physical operation that drills holes in you head and inserts electrodes into target areas deep within the brain as a first step. This part of the procedure is done with the patient conscious so they can answer questions and respond to instructions by the surgeon. The second part of the procedure involves inserting a neurotransmitter, usually just below the collarbone, that sends electrical pulses to the electrodes through wires running from the brain under the skin of the head, neck, and shoulders to the transmitter.

I’ve had Parkinson’s  for eight years and would like the benefits of DBS but am afraid of the operation. Drill holes in my head, stick electrodes in my brain, insert a battery pack transmitter in my chest, and run wires inside my body - you have to be kidding, definitely not for me, too scary. I know it’s helped a lot of people but no thank you. I pass on DBS. That is until now because in 2018 the FDA approved a new non invasive DBS for use with PD tremors and PD related dyskinesia that does not benefit from medicine.

Focused ultrasound is a non-invasive surgical procedure that uses ultrasound waves to destroy brain cells in the basal ganglia that cause movement problems. FUS is FDA approved to treat Parkinson’s tremors and is in clinical trials for dyskinesia (uncontrolled, involuntary movements that can develop with long-term use of levodopa). MRI brain imaging is used to precisely guide and direct high intensity focused ultrasound waves to destroy target cells deep in the brain that cause movement problems without harming non target tissue.

Focused ultrasound is a one step procedure that is non invasive and does not require putting electrodes in the brain, batteries that need replacing or recharging in the chest, or wires that connect them and does not need doctor office visits for programming. It uses MRI imaging to guide ultrasound beams to destroy brain cells that cause tremor without requiring anesthesia. Ultrasound is not reversible because it destroys brain cells. The problem with focused ultrasound is that it can now be performed on only one side off the brain meaning it eases symptoms on only one side of the body. When done on both sides it caused problems with speech, swallowing, and cognition. Unlike DBS, FUS does not require any maintenance. There are no wires, electrodes, or batteries, and it does not need repeated doctor visits for programming. FUS is new. We do not know the long term effects. DBS has been around for twenty years and is well tested and known. It usually benefits PWP for about ten years.

Both DBS and FUS help alleviate symptoms. What we really need is a cure.

Famous People With PD

 

Neurological disorders are now the leading cause of disability. Parkinson’s disease is the fastest growing disability. More than 10 million people worldwide have been diagnosed with Parkinson’s. Some as early as 20 years old others not until 80. Researchers believe the number of people with PD will double by the year 2040.

Michael J. Fox, Actor, Parkinson’s Activist, diagnosed in 1991 when 29 years old

Muhammad Ali, World Champion boxer,  PD Activist, diagnosed in 1984 at age 42 

Bhumibol Adulyade, King of Thailand, when diagnosed not known

Alan Alda, Actor, diagnosed in 2015 at age 79 

Roger Bannister, Champion Olympic Athlete, diagnosed 2011 at age 81

Margaret Bourke-White, Photographer, first celebrity to reveal PD diagnosis in 1952 at age 48 

George H. W. Bush, 41st US President, diagnosed in 2012 at age 88

Michael Richard Clifford, Astronaut, PD Activist, diagnosed in 1994 at age 42 

Salvador Dali, Artist, diagnosed in 1980 at age 76

Neil Diamond, Musician, diagnosed in 2018 at age 77

Francisco Franco, Spanish Dictator, diagnosed in 1965 at age 73

Kurt Gibson, Baseball Player, PD Activist, diagnosed in 2015 at age 61

Billy Graham, Evangelist, diagnosed in 1993 at age 75

Brian Grant, Professional Basketball Player, PD Activist, diagnosed in 2008 at age 36

Chester Himes, Author, when diagnosed not known

Ian Holm,  Actor, diagnosed in 2001 at age 70

Jesse Jackson, Civil Rights Leader, diagnosed in 2015 at age 74

Dave Jennings, Professional Football Player, diagnosed in 1996 at age 44

Ba Jin, Chinese Author and Political Activist, diagnosed in 1983 at age 79

Pauline Kael, Film Critic, diagnosed in 1982 at age 63

Deborah Kerr, Actress, diagnosed in 1992 at age 71

Gene McCarthy, American politician, when diagnosed not known

Mao Zedong, Chinese Revolutionary Leader, diagnosed in 19710 at age 78

Ozzy Osborne, Musician, diagnosed in 2019 at age 70

Pope John Paul II, Pope, diagnosed in 1991 at age 70

Ben Petrick, Baseball Player, diagnosed in 1999 at age 22

Davis Phinney, Cycling Champion, PD Activist, diagnosed in 2000 at age 41

Vincent Price, Actor, diagnosed in 1990 age 79

Sir Michael Redgrave, Actor, diagnosed in 1972 age 64

Janet Reno, US Attorney General, PD Activist, diagnosed in 1995 at age 57

Linda Ronstadt, Musician, diagnosed in 2012 at age 66

Charles Schulz, Created Peanuts, diagnosed in 1975 at age 53

Terry Thomas, Comedian, diagnosed in 1971 at age 60

Glen Tipton, Musician, diagnosed in 2008 at age 61

Pierre Elliot Trudeau, Canadian Prime Minister, diagnosed in 1996??? at age 76

George Wallace, American Politician, diagnosed in 1992 at age 73

Robin Williams, Actor, diagnosed in 2014 at age 63

Parkinson's Self Care

You are a doctor, your own doctor. Parkinson’s demands it.  Realizing that you have the disease

is the easy part. It’s not subtle. After a while you can’t ignore it. Knowing what to do about it is a little harder. Parkinson’s is a full time disease demanding 24 hour a day full time care. Symptoms and how you feel can be different every day often changing hour to hour and sometimes by the minute. It requires the full time care of a full time doctor. You are that doctor. You are your own personal doctor by necessity.

Every PWP has a different set of symptoms and each symptom shows to a different degree. Therefore the treatment each person needs is unique because the symptoms are what are addressed. Then the meds affect each of us differently. A med can help one person, make another hallucinate, and seem to have no affect on a third. You are the person who best knows and understands what helps and what doesn’t. Therefore many PWP have taken the responsibility of dealing with the disease and improving their life upon themselves. They are not ignoring established PD medical practice. Seeing the doctor once or twice a year for an hour and taking pills is only one part of dealing with PD. The real work is trying to minimize the daily impact and misery of the disease by taking responsibility for the day to day active management of PD.

Self care does not mean taking care of your physical, emotional, psychological, and spiritual health by yourself. It is one aspect of a collaborative management approach to PD in which patients, caregivers, and healthcare practitioners all work together toward shared specific goals. It is a full time job, not to be taken lightly. It requires taking the active management of the disease and symptoms upon yourself and making continuous adjustments in order to minimize the affect of PD. You manage the disease instead of it managing you. 

Become expert at self care. Track your symptoms, when they occur, what makes them better and what makes them worse. Notice when you feel good. Write it down. Look for patterns. Check in with yourself throughout the day and make adjustments as needed and see if they help. Discuss what you learn with your neurologist and other PWP. Make your home into a safe place where you can feel good when things are bad. Learn to communicate your needs to those around you. Don’t keep them bottled up inside. Surround yourself with good people that you can go to and count on when things are bad. The PD community understands what you are going through and can help. I have learned more about dealing with PD and managing my symptoms from fellow people with PD than I have from doctors. We are our own best resource.

The real problem of course is that PD is progressive and there is no cure. It just gets worse. In face of that it is up to you to live your life as though you have the cure in your hands, you are the cure. Take responsibility for improving your life upon yourself. You are your own best resource. My doctor seems genuinely interested in learning what I do to survive. 

Finally, plan for the future in order to enjoy and make the most of life at any age and stage of PD. This may sound a little touchy feely but what you have to do is understand and accept and love yourself as you are now, not hang on to what you were before PD. Your world changed. Parkinson’s will take you places you haven’t been before and challenge you in ways you weren’t challenged before. Better get ready. The train is coming.

 

Parkinson's Misery

Misery is a major Parkinson’s symptom not usually mentioned in PD medical literature. PD misery is not an early symptom often taking a few years too show. When present it can be worse than the main physical symptoms of tremors, slow movement (bradykinesia), muscle rigidity, impaired posture, and poor balance. They are physical symptoms that make the activities of daily living difficult but Parkinson’s misery makes your life … well really miserable. There is no better word for it. What  exactly is it? 

People who do not have the disease ask me to describe PD misery but no matter how hard I try they don’t get it. They understand the words but the only way to fully comprehend it is to have the disease and endure the suffering and distress knowing there is no cure and that it is only going to get worse. Let’s be clear there is nothing noble or redeeming about “the turbid ebb and flow of Parkinson’s misery.” It has neither hope nor “joy, nor love, nor light, nor certitude, nor peace, nor help for pain.” You have to experience it to know it and each PWP experiences it a little differently.

PD misery is both physical and mental. Physically the misery feels like being imprisoned in your own body, trapped in your symptoms without possibility of relief or escape. It is an uneasy feeling that something is wrong with you and there is nothing you can do to correct it. The emotional reaction adds to and intensifies the physical symptoms. Misery comes and goes with varying intensity. Basic misery is when your body feels out of sorts and every part of you feels bad. Full blown misery is when anxiety kicks in as well and the misery level moves up several notches and the discomfort, unease, distress, and suffering increase to a torment. It is not always present but when both the physical and mental are in full bloom it is the worst of the worst and completely defeats all my good intentions and resolutions to fight Parkinson’s and not give in to the disease. It is stronger than I am.

Misery has a mind of its own and like all PD symptoms affects each of us differently. I can’t predict when or why it comes and don’t understand why it lessens and leaves. I was having a decent week. My symptoms were manageable and no misery. I had a good nights sleep followed by an enjoyable day when for no discernible reason the full blown misery settled in, laid me low and took over. It tormented me for hours and then mercifully left only to return again and make the rest of the day hell.

What helps? Not much once misery sets in but I think you can help prevent it to a degree by being socially, intellectually, mentally, and physically engaged. My PD seems to lessen when I am with people and I sometimes forget that I have the disease. The same is true when my mind is occupied so feed your brain. Accept that you are miserable so it doesn’t turn into anxiety. Meditate and breath. Take slow deep breaths to relax. Light exercise sometimes helps if I am able to do it. Exercise is my friend. It makes me feel healthy. PD affects me less when I feel physically okay and exercise is the one thing you can do to slow the progression of the disease. Showers, breathing slowly and deeply, walking, old peaceful black and white movies. The understanding and support of family and friends and sleep, wonderful refreshing sleep, if I can.

Parkinson's Basics

More than 10 million people worldwide have Parkinson’s disease. 60,000 people in the US and 10,000 in the UK are newly diagnosed each year. Four percent are diagnosed before age 50 (early onset). Men are 50% more likely to get PD than women. Numbers will increase due to an increasingly aging population.

WHAT IS PARKINSON’S?

Parkinson's disease (PD) is a progressive neurodegenerative brain disorder resulting in loss of motor function that is caused by the destruction of dopamine producing neurons in the substantia nigra area of the brain.

WHAT ARE THE SYMPTOMS?

The four main physical wsymptoms are tremor, bradykinesia (slow movement), rigidity, and postural instability. Tremor is the most noticeable symptom and loss of balance leading to falls one of  the most dangerous. There are also many non motor symptoms such as depression, anxiety, mood changes, fatigue, sleep problems, and cognitive difficulties. We are snowflakes. No two PWP have the exact same symptoms to the same degree.

HOW IS PARKINSON’S DIAGNOSED?

There is no definitive test for PD. If you have two or more major symptoms your doctor will make a diagnosis based on your medical history, a review of your signs and symptoms, and a neurological and physical examination. He may prescribe levodopa and a positive response to the drug will help confirm the diagnosis. A DatsScan cannot confirm that you have PD because it does not distinguish between PD and other forms of parkinsonism. One study estimated that doctors fail to diagnose or misdiagnose Parkinson’s up to 35% of the time.

WHAT CAUSES PARKINSON’S AND WHO GETS IT?

The cause of PD is unknown but researchers believe that both genetic and environmental factors are involved. 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.

Specific genes have been linked to the disease. 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 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.

CAN PARKINSON’S BE PREVENTED? 

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.

HOW IS PARKINSON’S TREATED?

Once you’ve been diagnosed, you should work with your doctor to develop a comprehensive treatment plan to manage your symptoms and improve your quality of life. There are a lot of different treatment options out there. Unfortunately, there’s no medication or treatment right now that can reverse the effects of the disease or cure it completely.

The most common medicine used to treat the symptoms of Parkinson’s disease is levodopa, which was developed in the 1960s and works by synthesizing into dopamine in the brain. When levodopa is taken on its own, it may cause nausea so it’s usually taken with carbidopa (benserazide in the EU), which prevents side effects and increases its efficacy. The levodopa/carbidopa combination is available in many forms and strengths. There are many other prescription medications available to lessen PD symptoms. If your symptoms do not respond to these medications, surgical options may be a possibility. These surgical options involve implants that either stimulate the brain’s movement center or provide a steady flow of levodopa/carbidopa. Deep-brain stimulation is available to help patients who experience intense tremors and dyskinesia as a side effect of their medication.

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 develop 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 Balance

Parkinson’s symptoms are uniquely problematic. They are, in general, punishing and usually only get worse. Get one slightly under control and another pops up. I am experiencing several PD symptom indignities now but one I am very concerned about is my balance which is getting worse. The morning starts out okay but I become less stable as the day progresses until at night when I am so tired that I find myself bouncing off surfaces and careening around the room like a pinball until I realize that it's safest to get in bed and try to sleep. 

What is balance? How do we balance? Balance is the ability to maintain the body’s center of mass over its base of support. It is dependent on good posture and body alignment, good vision, and a brain that works well. Balance requires the brain to integrate and respond to many sources of information received continuously and simultaneously from the rest of the body while moving and when standing still. Information to our brain from our muscles and joints tells our brain such things as where we are in space, the type of surface we are on, and our direction and speed of movement. The brain then integrates everything utilizing executive functioning (planning, sequencing, organizing, problem solving, initiating activity) and responds by keeping us from falling. Wonderful when it works but balance is a problem for most people with PD because PD decreases communication between the brain and muscles and joints that tell the brain how we are moving. The older you get and the longer you have PD the worse your balance becomes.

My neurologist said that balance cannot be treated medically. You are on your own. His prescription was exercise and calcium. Tai Chi is one of the most recommended forms of exercise for maintaining and improving balance because it involves a constant shifting off weight from one foot to the other and from one part of the body to another. Tai Chi also teaches you to land heel first and then roll your foot down which prevents stubbing your toe and tripping. All exercise is good though. Walking is wonderful. Large movements like power walking and taking big steps can improve balance and retrain your brain to have a larger internal movement experience as your new normal resulting in larger external movements that carry over to all daily activities.

The calcium is to strengthen your bones not if but when you fall. If you have PD and balance problems you will fall. The only question is when and how badly. 60% of PWP have balance problems which may lead to falls. Loss of balance resulting in falls is the number one cause of injury and death from injury among people age 65 and older. 

In addition to motor dysfunction symptoms there are a number of non-motor symptoms that may impact balance including psychological factors (depression), sleep problems, additional medical problems, and trouble caused by some prescription medicines (sedatives, antidepressants, antihistamines, blood pressure medications). Belief is key. You will fall if you think you are going to. Confidence can improve balance ability. The more you think you are going to fall the more likely you will. Fear of falling is a risk factor for postural stability. Grab bars everywhere. I now consider the invention of grab bars equal to the discovery of the wheel. Be careful. It’s a rocky world out there.
The Berg Balance Scale is available on the web. It is self administered in 10 minutes. Worth doing to get a base line and then repeating on a monthly basis to see the change.

Parkinson's Never Sleeps

Parkinson’s is like rust, it never sleeps. Slowly and inexorably progressing in all its ways, Eroding my health and affecting the quality of my life more and more every day. Progressive, degenerative, incurable, neurological brain disorder. Moments of feeling okay interspersed with varying degrees of discomfort while getting a little worse each day.

At first it wasn’t too bad. I thought I could handle it. My right hand shook a little but I didn’t mind. It took Restless Leg Syndrome to get me to the doctor. I couldn’t lie in bed at night. My legs were jumping up trying to run around the room with me chasing after them and escorting them back to bed only to immediately bounce back up again. What is going on here, what’s happening to me? The doctor told me I had PD, prescribed some meds, and said come and see me if it gets worse. Of course it got worse, not too bad at first, but slowly and progressively developing until it completely changed my life.

One year later I thought this isn’t too bad. I can handle this if it stays this way. RLS under control with meds, right hand shakes a little more, meds make my head feel a little funny, but my movement and balance are good and I can take care of myself. It stayed that way for two years and then:

Three years later I became James Bond’s favorite bartender. All my drinks were shaken not stirred. Tremors in both hands and sometimes my legs and body as well. My body ached and had painful leg cramps many mornings. I began to have trouble with balance and stability and moved in one of three modes: normal movement most of the time, the PD shuffle when tired, and sometimes late at night and especially when dark I careened around the room like a pinball. Little old ladies wanted to help me while shopping. Kind people offered me their seat on the bus and I was not embarrassed to take it. The effort to accomplish the every day and necessary - shaving, bathing, eating, brushing my teeth, putting my shoes on - became more difficult. PD is a physical disease that takes an emotional toll. The effort involved to do daily tasks slowly wears you down over time. It’s a double whammy. PD affects the bodies ability to function and also robs you of the energy necessary to perform tasks. Do the dishes - are you kidding , I’m just happy I had the energy to make dinner. But as my body shrinks in on itself and my abilities diminish my spirit grows stronger. Sense of humor intact.

Seven years after diagnosis with PD and I now use a walker when going outside and sometimes late at night to get around the house. It is not absolutely necessary but it makes it easier especially now that my balance is not as good and my right leg freezes so I can’t move it. Sleepless nights make for fatigued days. It takes two or three times longer and increased concentration to accomplish simple tasks that I once did without thinking. I am concerned about the possible future side effects of the meds as I take more to combat more frequent and powerful off periods. My mind is still good but I worry about how much longer I can perform the necessary activities of daily living without requiring help. Growing old is part of life and we all suffer the slings and arrows of aging but I miss who I was and am saddened by what I am becoming.

What will the future bring? I don’t know. I accept that PD is progressive and will get worse but believe I have some influence in determining the progression of the disease. What am I doing to deal with it? I learn all I can about PD so I can make intelligent decisions to best deal with it. Partner with my doctor to make the best comprehensive medical plan for my unique symptoms. Take my meds as prescribed and let my doctor know how they are working. Exercise, exercise, exercise as much as possible as it is the only thing we know of that can slow the progression of the disease. The more I exercise the better I feel. Be socially involved and engaged with life and the PD community. Appreciate as much as possible the good things I have. A healthy mind and positive attitude is the greatest asset in fighting the disease.

Parkinson's Myths And Facts

What a long strange trip Parkinson’s has been. Made stranger by far due to how little I knew about it and the misconceptions I had before I was diagnosed. Parkinson’s is great teacher. I learn new things every day. Seven years into it and I am still learning how to best take my meds correctly. Many of the biggest misconceptions about PD revolve around Levodopa (Sinemet in the US and Madopar in the EU) and other PD meds.

LEVODOPA AND PD MEDS: Levodopa is the most effective drug for treating PD physical motor symptoms. It does not stop working after a number of years. Levodopa does not become less effective with long term use. You need to take more because the symptoms progress and the disease gets worse. A friend with PD has been using Levodopa for 16 years.

Levodopa does not cause or increase PD symptoms or make them worse with long term use. Clinical trials have proven that PWP administered Levodopa were better off than those given a placebo. Results of conclusive studies can be found on the web.

Some people believe they should wait as long as possible between doses. Levodopa is most effective when taken before the previous dose wears off. If you wait too long the new dose may not kick in at all.

FACT: Levodopa competes with protein for absorption and so should be taken an hour and a half to two hours after eating and a half hour to an hour before eating. Levodopa does not treat all PD symptoms but it helps make many motor symptoms more livable.

TREMORS: Tremor is the most noticeable and best known symptom of Parkinson’s but it is a major misconception that everyone with PD has tremors. Only about 70% of PWP have tremors during the course of the disease. Be thankful if you are in the 30% who don’t. The reverse is also not true. Not all people with tremors have PD. There are many different kinds of tremors. Ten million people in the United States, for example, have essential tremors and one out of five people over the age of 65 shakes but doesn’t have PD.

FACT: 7 to 10 million people worldwide have PD. There are about 60,000 newly diagnosed cases each year in the US and about 18,000 in the UK.

SYMPTOMS: All PWP know that PD is not only a physical motor symptom disease. Many feel that the non motor symptoms are worse: depression, anxiety, apathy, sleep disorders, cognitive symptoms, constipation, bladder problems, sweating, sexual dysfunction, fatigue, pain, cramps, tingling, and lightheadedness.

FACT: No two PWP have the same exact symptoms that progress in the same way.

CAUSE: It is not true that genetics is the main cause of PD. Researchers estimate that less than 10% of cases are genetic. The cause is not fully known but environmental factors and a persons lifestyle are also important. Most researchers believe it is an interaction between genetic and environmental factors. 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.

PD PROGRESSION: Many people, when first diagnosed, believe the disease will stay the way it is and not get worse. PD always progresses and in time may become mentally and emotionally exhausting and physically debilitating. It seems to have a mind of it’s own and symptoms and intensity will vary from person to person and  day to day. Some days better and some worse.

WHAT YOU CAN DO: Some people think their life is over when diagnosed with PD. So much of how you fair with the disease is up to you. Fight back. 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. 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.

Final fact: Were you diagnosed with Parkinson’s? You may not have it. Estimates of PD being misdiagnosed, especially in its early stages, range from 30% - 50% of the time. It goes both ways. Doctors may tell you that you have PD when you don’t or that you don’t have it when you do.

Parkinson's And Exercise

You have Parkinson’s and your doctor recommended exercise. I don’t have to explain why. All PWP know that exercise is one of the few things you can do to help slow the progression of the disease and new research suggests that exercise may decrease neuron injury in PD as well. So what exercises should you do? My answer is easy, any and all. Which ever you most enjoy and are most likely to keep doing. Which exercises are most beneficial for PWP? The vote is in. All research points to dance for cognition and fitness, Tai Chi for balance, LSVT Big to maintain and recover movement amplitude, and high intensity interval training to slow the progression of the disease as four of the best forms of exercise that people with PD can do.

PWP may have difficulty walking. They take short shuffling steps and have problems with posture, freezing and balance particularly when turning or walking backwards resulting in an increased risk of falls leading to injury. Dance involves learning specific movement strategies and improves strength, flexibility, agility, coordination, gait, sequencing, balance, and overall fitness. Dance class installs confidence and joy and leaves me feeling that I can move better when the class finishes. Partner dancing involves the brains executive functions that benefit cognitive processes of working memory, planning, and task initiation. Partner dancing promotes socialization and adds complexity because you have to continually adjust your movement to that of your partner and other dancers around you. Dancing to music teaches you to adjust your movement to external cues. Dance is a great workout combining physical activity, social interaction, and mental stimulation. It can enhance your social life, promote self-confidence, reduce stress and depression, promote relaxation, be a wonderful outlet for self-expression and creativity, and it is fun.

My neurologist said that balance cannot be treated medically. You are on your own. Tai Chi is one of the most recommended forms of exercise for maintaining and improving balance because it involves a constant shifting of weight from one foot to the other and from one part of the body to another. It is a set of low impact gently flowing movements believed to have mental, physical, and spiritual benefits. The movement patterns are preset and performed in a slow, focused manner accompanied by deep breathing. It has been likened to meditation in motion. Tai Chi teaches you to land heel first and then roll your foot down which prevents stubbing your toe and tripping. As an extra incentive, researchers found that seniors who do tai chi several times a week have improved memory and thinking skills and are less likely to fall. You can do it by yourself once you learn the routines.

LSVT Big is a movement therapy based on the principles of the Lee Silverman Voice Therapy speech program. Its goal is to restore and maintain normal movement amplitude that has been lost to PD by recalibrating the way a person moves. Through multiple repetitions of high intensity, increasingly complex, large scale movements involving the whole body LSVT Big reteaches you to move normally as before PD. It enables PWP to move with more confidence and safety by improving mobility, gait, posture, skeletal alignment, freezing, and balance. Both large motor tasks such as walking faster, taking bigger steps, standing up, and dressing and small motor tasks like buttoning a shirt, tying shoes, and writing are often improved within a month of dedicated practice. LSVT Big emphasizes high intensity, multiple repetitions, and complexity which is key to activity dependent motor learning and neuroplasticity.

Many PWP find cycling, non contact boxing, and ping pong beneficial. Others do yoga for flexibility and relaxation and weight training for muscle tone and strength. Do whatever works best for you. Start slow. Try to exercise 60 minutes a day. Multiple 20 minute sessions are also good. Researchers specifically recommend high intensity interval training (four rounds, each round consisting of 4 minutes of high intensity forced exercise and 3 minutes rest). Be happy with whatever you can do and build on it. Think of every time that you exercise as a victory over PD. If you do nothing else walk. Walking is wonderful. Good for the whole body and also gets you out and into the world. 

The Parkinson's Brain

The brain is the most complex known structure in the universe. It weighs about 3 pounds and is mostly made up of billions of neurons and glia cells. Glia cells protect neurons by surrounding them and holding them in place, supply neurons with oxygen and nutrients, insulate neurons from each other, and destroy and remove dead neurons. Neurons transmit electrochemical signals to other brain cells, muscles, and gland cells, and control all muscle movement. 

Parkinson's disease occurs when dopamine producing neurons located mostly in the substantia nigra, an area of the brain that controls movement, become impaired or die. Normally, these neurons produce dopamine, an important brain chemical. When they die or become impaired, they produce less dopamine which causes the Parkinson’s related movement symptoms of tremors, rigidity, slowness of movement, and postural instability. Some areas of the brain have demonstrated the ability to grow new cells but not the dopamine producing cells of the brain. Scientists still do not know what causes cells that produce dopamine to die or fully understand how PD affects the brain.

PWP also lose the nerve endings that produce norepinephrine, the main chemical messenger of the sympathetic nervous system, which controls many automatic functions of the body such as heart rate and blood pressure. The loss of norepinephrine causes some of the non-movement symptoms of PD such as fatigue, irregular blood pressure, decreased movement of food through the digestive tract, and is important in preventing sudden drops in blood pressure when a person stands up. Recent research found that norepinephrine may help slow brain decline leading to dementia. Norepinephrine is released when the brain feels engaged, leading researchers to encourage challenging the brain with complex activities that exercise the brain.

The brain is so important and so smart that it developed a way to protect itself. The blood brain barrier was discovered in the 19th century when experiments revealed that dye injected into the bloodstream colored all of the body’s organs except the brain and spinal cord. When the dye was injected into the spinal fluid, only the brain and spinal cord were affected. The blood-brain barrier is made up of special, tightly bound cells that keep the brain safe and stable by allowing oxygen and nutrients to pass through but preventing toxins, pathogens, and other harmful substances from entering the brain through the bloodstream.

Parkinson's disease dementia is a decline in memory, thinking, and reasoning that develops in many PWP. Many brain cells of people with Parkinson's contain Lewy Bodies, unusual clumps of the protein alpha synuclein. Researchers are trying to better understand alpha synuclein and the impact it has on Parkinson’s disease and Lewy Body dementia. They are looking for ways to prevent the formation of alpha synuclein in the brain as well as ways to dissolve it once formed. Dementia with Lewy Bodies is the second most common type of neurodegenerative dementia after Alzheimer's disease.

The brain continues to grow, develop, and learn throughout life so remember what the Door Mouse said, feed your head. Nourish your brain and life with mental stimulation, physical exercise, and a healthy diet.

Parkinson's Tremors

Parkinson’s turned me into James Bond’s favorite bartender. All my drinks are shaken not stirred. Sorry, sorry I know PD and tremors are no joke but I couldn’t help myself. Tremors often are one of the earliest and most noticeable signs of PD. They are caused by reduced levels of dopamine due to the loss of dopamine producing cells in the brain.  About 70% of people with PD have a tremor at the time of diagnosis. Researchers define two main types of PD tremor, resting tremors and action tremors, but PWP know that no two of us are alike so there are as many variations as there are people who have the disease. Tremors can be mild or debilitating or anywhere between. Consider yourself lucky if you don’t have them.

Resting tremors are the most common form of tremors associated with PD. They occur when a body part is at rest against gravity, when the muscles are relaxed or still, when you are lying in bed, or when your hands are resting on your lap or at your side. It is inhibited while moving and not present (thankfully) while sleeping.

Action tremors are less common than resting tremors affecting about 25% of PWP at diagnosis and 40% during the course of the disease. Action tremors occur during any type of movement of an affected body part and are triggered by muscle or muscle group contraction. Action tremors can be task specific caused by the movement they accompany. Writing, for example, often causes the hand to shake. 

Resting tremors are often referred to as pill-rolling tremors because they resemble the motion of rolling a small pill between the thumb and index finger. Tremor amplitude decreases with voluntary activity. Stress, of course, makes them worse. All PWP are different but generally tremors start in one hand, then progress  to the arm and foot on the same side of the body, then go to the other side of the body, and may then go to the whole body including the head. Tremors are not the worst PD symptom but they can be bad. They may be mild or strong. They may continually get worse or they may get worse for a period of time  then level off and improve, and sometimes they may stop. Tremors are slightly less common in younger PWP. PD usually progresses more slowly with those that have tremors than those that don’t.

Tremors are treated medically with drugs and Deep Brain Stimulation. DBS passes a small current with high frequency through areas of the brain that block motor function and has a 90% success rate in decreasing or getting rid of Parkinson’s tremors. There is some evidence that stress reduction techniques like yoga, deep breathing and meditation are helpful. Some people get relief by reading or watching TV, and others find that socialization reduces symptoms. Researchers say that activity lessens tremors which seems true except, like all things PD, when it acts contrary and makes me shake more.