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.