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.