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.