Moving Beyond Fear

williams-ride-rosesReflecting on the recent death of Robin Williams, my thoughts have run the gamut from his incredible talent and abundant philanthropic generosity to the insidious depth of his depression – one so deep that it inevitably caused him to take his own life.

While I have not personally experienced even mild depression, I’ve witnessed it in others. This illness can prevent a person from appreciating everything that is good in their lives and wears them down with negative thoughts. In many cases, proper treatment at the right time can return a person suffering from depression to a productive, even joyful life. Sometimes the demons are simply too powerful and overwhelming. Perhaps that is what caused Robin Williams to make his fateful choice. On one level, I can understand what he did, yet certainly feel sorrow that he is no longer around to entertain us and lighten our load with his mirth and antics. It is particularly tragic that his children have been robbed of his time, attention, and love by a condition that was beyond his control.

If there is some good to come out of Robin Williams’ tragedy, it would be a heighted awareness about depression and encouragement for those impacted to seek treatment and support.

The revelation that Robin Williams had been diagnosed with Parkinson’s Disease may have been considered by some as the “straw that broke the camel’s back.”  The public’s knowledge about Parkinson’s may be limited to images that they have seen of Muhammed Ali’s visible tremors or that old man down the street who moves so slowly. The fact of the matter is that over one million Americans live with PD, and approximately 60,000 news cases are diagnosed each year. According to the Michael J. Fox Foundation, “Parkinson’s disease is a chronic, degenerative neurological disorder that affects one in 100 people over age 60. While the average age at onset is 60, people have been diagnosed as young as 18.”

So what is Parkinson’s Disease? The Michael J. Fox Foundation provides the following explanation, “We understand Parkinson’s disease to be a disorder of the central nervous system that results from the loss of cells in various parts of the brain, including a region called the substantia nigra. The substantia nigra cells produce dopamine, a chemical messenger responsible for transmitting signals within the brain that allow for coordination of movement. Loss of dopamine causes neurons to fire without normal control, leaving patients less able to direct or control their movement. Parkinson’s disease is one of several diseases categorized by clinicians as movement disorders.”

There are a myriad of symptoms and it has been called a “boutique disease” because each patient’s experience is unique. Symptoms can range from the classic resting tremor or uncontrollable shaking of a hand or leg, to slowness in moving, balance issues, cognitive impairment, problems sleeping, and speech or swallowing problems. What many don’t realize is that up to 60% of Parkinson’s patients experience depression.

It is understandable that a person may become worried or concerned after receiving any type of significant life altering diagnosis. In Parkinson’s however, depression may actually be the result of biological changes in the brain. For some, depression may be the first “symptom” before any of the observable movement disorders become apparent. Dr. Michael Okun, Medical Director for the National Parkinson’s Foundation states in this interview that depression in Parkinson’s can often be treated successfully. He points out that there are PD10, PD20, PD30, PD40, and even PD50 patients, individuals who have lived quality lives with the illness for those number of years since their diagnosis.

“A Parkinson’s diagnosis, although life-altering, is not a death sentence. Symptoms will change over time, as will your attitude; no one should expect, nor should you expect from yourself, that this will be easy to deal with. But people with Parkinson’s and others alike should all value and make the most of every day. In a best-case scenario, a Parkinson’s diagnosis can become a real wake-up call: a chance to re-examine your priorities, and focus not on what you cannot do, but instead, on what you can.”

Victory Crew logoThe Davis Phinney Foundation, like many other Parkinson’s related organizations, funds research projects; however, they approach the condition from a more wholistic viewpoint. “While it’s critical to find a cure for Parkinson’s, we feel strongly that people living with this disease also need information and tools to live well today. To support this mission, our initiatives, including The Victory Summit® symposia series, the Every Victory Counts® manual for living well, the Living Well ChallengeTM educational webinar and the Parkinson’s Exercise Essentials DVD benefit Parkinson’s patients, their families and caregivers throughout the United States. Each year, we fund innovative research aimed at identifying factors, including exercise and other behaviors, that have a measurable, positive impact on quality of life.”

In a Facebook post following Robin Williams death, the Davis Phinney Foundation stated, “Depression is common in people with Parkinson’s. It can be a lifelong problem, a reaction to struggles with Parkinson’s or a symptom of Parkinson’s due to biochemical brain changes or medication. The important thing is to be aware that it is treatable and shouldn’t make you feel weak or beaten down. We have two webinars that are recommended viewing for anyone living with Parkinson’s or caring for someone who is: http://vimeo.com/61025938 and http://vimeo.com/85410742 You can also get more information about emotional health in the Every Victory Counts manual, free for the asking: http://www.davisphinneyfoundation.org/living-pd/victory-counts/ .”

In dealing with any challenge, knowledge is power. Those recently diagnosed need to arm themselves with information that will help them to direct their own care and remain in control of what may seem to be an out of control situation. Help is out there, fantastic organizations such as the National Parkinson’s Foundation, Michael J. Fox Foundation, and Davis Phinney Foundation are working tirelessly to support research, fast track breakthrough medications, provide solid information on the benefits of exercise and movement, and – above all – offer HOPE to those impacted by Parkinson’s Disease. Their collective work focuses on improving the quality of life for not only the patient, but the patient’s families and caregivers as well.

A blog that I read the other day prompted me to write this article. It was posted by Ken Tripp, a gentleman whom I’ve just recently gotten to know due to several factors which we share in common – similar age, both have Parkinson’s, both love cycling, and both ride Catrikes – a three wheeled recumbent bike. Ken’s post was entitled “Why Do People Fear Parkinson’s?” I took it as a “conversation starter,” a way to increase awareness to the general public of concerns faced by people who receive a diagnosis of Parkinson’s. Ken wrote,

The Fear of Parkinson’s
By Ken Tripp
Why do some people fear their Parkinson’s?
They may hide their tremors so they don’t appear nervous
They worry that their walk will make them look drunk.
They hide their PD from their employer for fear of losing their job or insurance.
They fear they won’t be able to do the things they love.
They fear their friends will avoid them.
They stop eating for fear of choking.
They stop going out in public for fear of falling.
They fear they will go broke paying for meds and surgeries.
They fear nobody can or will take care of them.
They fear they will no longer be useful to society.
Now you know.

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This is a valid list of concerns. Just like symptoms, someone with Parkinson’s may face one or two of these, others more. In my estimation, where Ken stops short is not providing ways analyze and evaluate each of these fears to determine their validity and possible ways to mitigate the consequences.

“There’s nothing to fear but fear itself.” This famous quote from Franklin Delano Roosevelt referred to the fact that uninformed fears and irrational panic can turn a manageable situation into a dangerous crisis. It is very common to be fearful of the unknown. Arming yourself with knowledge and taking steps to contain any fearful situation can lead to the fear being reduced or eliminated.

Sorting through our fears to categorize them as valid or unfounded can be very difficult to do when we are in a state of panic. A person who has just received a diagnosis of Parkinson’s is not prepared in that highly emotional moment to make this type of logical assessment. They’ve just been knocked of balance by what feels like a huge wave crashing down on them and then being sucked out to sea by the undertow.

It takes time to address our fears, and often requires the help of our family, friends, and medical and spiritual support teams. One article entitled “Dealing With Fear” suggest that there are healthy fears and unhealthy fears. Healthy fear is moving past the stage of denial, becoming informed about the basis of our fears and considering potential options. It is “taking stock of our present situation so that we can resolve to do something about it.” Unhealthy fears, can often be dismissed upon further, constructive analysis. A combination approach is known as balanced fear. “A balanced fear of our delusions and the suffering to which they inevitably give rise is therefore healthy because it serves to motivate constructive action to avoid a real danger.”

With some poetic license, I would like to offer my “two cents” on each of the fears which Ken noted.

They may hide their tremors so they don’t appear nervous. (John – As a public speaker I was concerned that my tremor would distract my audience from hearing my message. A friend reminded me that they were there to hear what I had to say, so I should “own the room.” The same applies to one-on-one conversation – you haven’t changed and if you have something important to say, look a person directly in the eye to keep their attention focused on your ideas.)

They worry that their walk will make them look drunk. (John – I was with a good friend, Carl Ames, at the Copper Triangle Classic in 2012. Carl, who has dealt with PD for about five years, had just completed a 78 mile bike ride with an elevation gain of over 6,000 feet and climbed three mountain passes in excess of 11,000 feet each. With the exhilaration of this achievement and the fact that his meds were headed into the “off” cycle and he’d gone into a freezing condition (unable to do any more than shuffle his feet), Carl asked me to lend me his arm so we could walk 50 feet to talk with another person. Carl didn’t let it bother him, so why should it bother you? By the way, acting drunk without the hangover has it’s upside.)

They hide their PD from their employer for fear of losing their job or insurance. (John – this is a valid concern. Most people will need to work as long as possible, if for no other reason than to maintain their insurance. However, we do have rights. Speak with a employment law attorney. Here’s a recent article about Accommodation Ideas for Employees With Parkinson’s. Deciding when to inform your employer is a personal and sometimes complex issue – get solid advice on when and how to tell them – and document everything.)

They fear they won’t be able to do the things they love. (John – Who says!!!!! You might even find new things that you love doing even more. Anything to do with motion is good for you – cycling walking, swimming, dance, Tai Chi, Yoga. Sure, stages of the illness may require adjustments – if balance becomes a problem, move from a two wheeled bike to a Catrike – a stable three wheeled recumbent. Just keep moving! And sign up for a National Parkinson Foundation “Moving Day” fundraising event near you.)

They fear their friends will avoid them. (John – If that’s the case, they weren’t real friends in the first place. Seek out Parkinson Support Groups and attend their meetings. If you are younger, you might find a Young Onset Parkinson group to join. This is not only a source of new friends, but of information, resources, and a safe haven – everyone understands what you are going through. If you feel that you “aren’t like the others,” perhaps not as advanced; then offer to help someone out with a ride to a meeting or a repair around their house. After all, it’s “not all about you!” Staying socially connected is just as important as your meds.)

They stop eating for fear of choking. (John – Again, a valid concern for a percentage of people with PD. Ask your doctor for advice. Choking is a normal reflex when food goes down the wrong way – in a sense your body is protecting you. Like your Mom said, “Chew every bite 20 times” and “Don’t talk with you mouth full.”)

They stop going out in public for fear of falling. (John – Falls are not good and should be avoided at all cost. That being said, learn how to avoid falls. The National Parkinson Foundation recently hosted a great webinar about falls entitled, “Balancing Act: Fall Prevention in Parkinson’s” which you can watch to learn more. I couldn’t get the direct link to work, but I will report that to NPF to correct.)

They fear they will go broke paying for meds and surgeries. (John, the ability to pay for any health related expense is a valid concern for anyone these days. Learn about the details of your insurance plan and seek help from professionals. Most importantly, be your own advocate! If you need to go into the hospital for any reason, order the “Aware in Care” kit from the National Parkinson Foundation. It just might save your life – and prevent additional expenses due to unnecessary complications. By the way, this invaluable resource is free!)

They fear nobody can or will take care of them.  (John – At some point you are going to need help. So now might be a good time to get off your high horse and learn a little humility, bury the hatchet, or mend some fences. If you express genuine gratitude for the assistance provided to you; then you are much more likely to get all the help you need.)

They fear they will no longer be useful to society. (John – Some of your roles may shift as your condition evolves. You may no longer be an executive, an architect, or a professional musician, but you will always have value and be useful to society. Handwriting may become illegible, typing a chore, speaking may become soft, but find a way to make yourself heard, your ideas shared, and your love for your family and friends shared. As Larry Smith, featured in the award winning documentary “Ride With Larry” says, “If you love life, you’ll fight for it.”)

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I wish to thank my friend, Ken Tripp, for providing me with the opportunity to provide my perspective on the fears which he wrote about. I know that Ken, like me, errs on the side of Optimism – not unlike Michael J. Fox and so many other Parkinson heroes who I’ve met since my diagnosis in 2010.

Ken has chosen to set aside his fears and will be starting a 500 mile Charity Ride for Parkinson’s on September 1, 2014 with a bike ride from Louisville to Cleveland. He will be riding a Catrike Expedition. To follow Ken’s progress or donate to his ride, go to his website “Cycling for Parkinson’s“. This task might seem insurmountable for most people – whether living with PD or not, but Ken has been training and is dedicated to completing the ride in 12 days. Cheer on this PD Fighter. Ken has chosen to “Live Well Today” and to raise money for Parkinson’s Research and Awareness. Ken Tripp SAG Wagon

I have read about Robin Williams passion for cycling. In an interview in 2003, he said, “I’m lucky to have bikes in my life.” He even credited cycling with helping to “save his life” at one point. I wish that cycling could have done so this time. Instead, I hope that Robin Williams will be remembered as a person who lived a wonderful life, faced several difficult issues and be thought of as a champion for expanding awareness about both depression and cycling. Robin, It would have be a riot to ride with you.

I’ll close with one of my mottos, “Keep Calm, Hug Often, and Pedal On!”

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