Posts

Making Meaning of It All

well-being

Wellness map in hand, I pass through the fog of conflict that is my life and agree to enter sanctuary. I surrender myself to experiences of bliss and well-being.

Caressed by calmness, the fog has lifted. Like a crisp fall day, the colors are vibrant and the view breathtaking. In the distance is something not seen before. This is the destination toward which I must strive. It beckons to me, constantly whispering in my ear, “Come to me and discover what you need.”

It’s all making sense.

Our brains are wired to make connections. Not just neural ones, but associative ones. When we have a new experience, we associate it with memories of similar events. The further the new experience is from the known, the more difficult the association.

An experience that supports our well-being can be so different from any in our history that an association is difficult. It is so difficult that we procrastinate. “I can’t make sense of this, so I’m not going to do anything about it until I can.” It’s a cautious approach I’ve taken many times in my life. Eventually, I get splinters from sitting on the fence too long.

Greek philosopher Epicurus believed that happiness comprises friendship, freedom from everyday life and politics, and time and space to think things through. Epicurus would not advise spending money as temporary relief for a bad day. He would suggest taking time to reflect and contemplate.

Socrates had a different stance, as evidenced by his dictum: “The unexamined life is not worth living.” Socrates believed you should review and examine every aspect of your life to get the best out of it. A life bereft of meaning and purpose lacks action guided by that purpose. Meaning and purpose are part of a healthy self-concept.

Making sense of a well-being moment can be challenging. They are often scarce, and we have little experience with them. But well-being moments always come with useful information. Without that, they are just “feel-good” moments.

Taking that information and turning it into wisdom for a lifetime requires wrestling with it, using it, and integrating it into life — use it or lose it. It helps to have an experienced guide. Teachers of mystic traditions suggest mentoring in a sanctuary as one way to assist in the meaning-making process.

How we make sense of everything is vital to our movement forward, against the challenges, the setbacks, and the frailty that we encounter. Making sense of it gives us meaning and purpose throughout our journey with Parkinson’s disease, and the rest of our lives.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Making Meaning of It All appeared first on Parkinson’s News Today.

‘Get It On Time’ Petition Seeks Better Access to Parkinson’s Meds in UK

petition

A healthcare petition called “Get It On Time” is circulating in the U.K. among people with Parkinson’s disease (PD). According to the petition, hospitalized PD patients are not getting the medications they need on time, if at all.

Over 700 patients in the U.K. were surveyed from May to July. Seventy-eight percent said their health suffered setbacks as a result of missed medications, including tremors, anxiety, decreased mobility, and communication issues. The Guardian health policy editor Denis Campbell noted that some Parkinson’s patients are unable to walk or talk because they don’t get their medications on time.

On Twitter, David Sangster, a Parkinson’s advocate in the U.K., described his hospital experience as a “caring environment, clean and professional. The visiting specialists nurses were … experts in every facet of PD, they were remarkable. … But #parkinsons was not understood on the ward and that’s wrong.”

Dawn Iola Chappell, another U.K. resident, responded to a tweet regarding the petition by saying, “[M]y Dad did not get his medication on time and it was the beginning of the end.”

It’s not just an issue in the UK

Before my deep brain stimulation surgery, my doctor told me to bring my medications to the hospital and administer them myself. The staff was unaware of the importance of distributing medications accurately or on time. Hospitals can be a frightening place, so it’s important that you take an active role in your healthcare, no matter how much you trust your medical team.

When medication schedules are not adhered to, a variety of problems can occur. The patient may begin to flail about. Tremors that were under control may worsen, or the patient may appear to be experiencing seizures. In response, hospital staff might treat the patient for seizures, resulting in dangerous and even fatal outcomes, which you can read about here.

What can you do now to prevent a mishap later? If possible, people with PD should have an advocate with them who knows the medication schedule and can help with administration should the need arise. One patient suggested the use of flashcards when a patient is coherent but unable to communicate verbally. For example, one of the flashcards could include: “Need PD meds now!”

If you’re a resident of the U.K., consider signing the petition. Every name helps!

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post ‘Get It On Time’ Petition Seeks Better Access to Parkinson’s Meds in UK appeared first on Parkinson’s News Today.

We Share a Fear of Being a Burden, but We All Need Someone

burden

“You’re not a burden. You’re a human.” –Anonymous

It’s easy to feel alone when living with a chronic illness. You may think no one else truly understands, that you’re nothing more than a burden to others — with all of your “oddities,” you no longer fit in. Those feelings can push you to believe that you are destined to being alone, which leads you toward loneliness.

If you’re not involved in a community support group for people who also have your chronic illness, you are missing out. I am not the kind of person who jumps up and heads out the door to join a support group. It took me a long time to get connected because when I was diagnosed, I was working, and my hours didn’t allow me to attend a structured group. So I found support another way.

One night while surfing the internet, I came across a site, DailyStrength. This online community of people with various diseases and issues is divided into small groups — one of these is for people with Parkinson’s disease. I clicked and joined.

At first, I was an observer. I quickly recognized that this group of people cared for each other. The sense of community was phenomenal. They understood each other in a way no one else could. They were in the same boat or rowing a similar one — venting, grieving, encouraging, supporting — like a family sharing an unspoken bond. 

I wanted to be a part of that family.

“The friend who can be silent with us in a moment of despair or confusion … who can tolerate not knowing, not curing … that is a friend who cares.”  –Henri Nouwen

The real fear of being alone is familiar to anyone with a serious illness. We fear something will happen to us when no one is around to help — for instance, falling and being unable to get up. We worry about being alone at the end of our journey with no one by our side. We fear that no one will understand what we’re going through — or will go through — and that we’ll find ourselves alone, physically and emotionally.

I have always been a “giver.” And I know it’s hard for some givers to receive. It feels awkward, unfamiliar, and selfish. If you are a giver, you will know of the joy and the blessing that you receive when you give. So when we refuse to be the receiver, we are taking that giver’s blessing from others.

Do you need someone? 

Do you need someone to talk to, care, or understand? Would you like to have someone to sit and cry with you? Let them know. No one can read your mind. Trust me on this.

Many of us who have a chronic illness share a fear of being a burden to someone else. If you have Parkinson’s, you will have to accept help from someone, somewhere, somehow, at some time. 

My story of being humbled

In my earlier days of Parkinson’s, I found it increasingly difficult to tie my shoes. To have someone tie them for me when I was in my early 40s was a little humiliating to me. 

I knew that it could be worse, but I felt like a kindergartener having her mommy tie her shoes because she couldn’t figure it out for herself. 

I disliked asking my husband to tie my shoes. It felt like an inconvenience, a burden with a capital “B.”

Having my shoes tied humbled me and also prompted me to find footwear that I could slip on by myself. Is it still an issue of pride? Perhaps. Or maybe I merely want to hold on to my independence for as long as possible.

“Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.”Bernice Johnson Reagon

Don’t allow yourself to be paralyzed and without friends. Put on those shoes, even if someone else has to tie them for you. Then get up and go out. Make a new friend or call an old one. You’ll feel better for it.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post We Share a Fear of Being a Burden, but We All Need Someone appeared first on Parkinson’s News Today.

Letting Go Is Not ‘Forever Gone’

letting go

“Letting go” is a constant theme with Parkinson’s disease. What used to be easy is now challenging. Gone are my days of hiking for miles or spending hours in the gardens digging, hauling, lifting. Those times when 24 hours of project immersion got me through complex problem-solving and four college diplomas are over. I can’t do it the same way anymore. Giving up these expectations of myself has not been easy, and the process of letting go always presents itself at sanctuary’s door. It is never entirely gone.

Psychology Today columnist Judith Sills, PhD, explains that we tend to get stuck in our past, but by letting go we can move forward. “It’s an axiom of psychology that we are some recombination of all of our yesterdays. To move forward wisely, we are therefore often urged to look back. But there’s a point where appreciation and analysis of the past become gum on your psychological shoe. It sticks you in place, impedes forward motion, and, like gum, it doesn’t just disappear on its own. You need to do some scraping.”

American poet and philosopher Ralph Waldo Emerson said, “A foolish consistency is the hobgoblin of little minds.” When you can’t let go, you are haunted by the hobgoblin. If you let go and have nothing to replace it, the hobgoblin will rush to fill the void. Sanctuary holds safety and sacredness in place of the void allowing the possibility of well-being to unfold.

Letting go is learning to live with the bad things that happen — not by eradicating memory, but by shifting attention and perception. In my quest to let go and accommodate chronic Parkinson’s symptoms, I turn to sanctuary. I know when I am using sanctuary appropriately because I run smack into resistance. It is extremely hard to let go of old habits, old scars, and old voices playing on old tapes. The path of letting go is full of detours and wrong turns. I’m always learning more about how to let go. It is a process, and it’s never done.

Writing on Psych Central, John M. Grohol identifies some key steps in the “letting go” process:

  1. Decide to let it go.
  2. Express your pain — and your responsibility.
  3. Stop being the victim and blaming others.
  4. Focus on the present — the here and now — and joy.
  5. Forgive others and yourself.

Throughout our lives, much of our self-identity is defined by what we do rather than who we are. Strip away the things that we could do, and we feel naked without the career clothes we used to wear. Social conversation often turns to, “What do you do for a living?” I want to reply, “I’m just trying to survive.” People who still see me as the person I was can’t see my struggle with letting go that drains my energy and creates overwhelming fatigue.

Family, friends, and some medical providers often do not fully understand how letting go carves away the substance of identity, whittling it down to a splinter. The following quote sums it up for me: “Those who mind don’t matter and those who matter don’t mind.” It results in more loss thrown on a plate already overflowing with dead bones.

Letting go occurs for me on many levels, affecting my sensations, emotions, thoughts, and pain. Sanctuary is not merely a place to “feel good.” It gives me the strength and calmness to face my demons, mourn losses, move forward into the future, and find peace with myself and those around me. Letting go is not losing entire memories even when they’re interwoven with the hard times. Letting go is not forever gone. It remains at sanctuary’s door opening the possibility of well-being.

 

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Letting Go Is Not ‘Forever Gone’ appeared first on Parkinson’s News Today.

True Grit Is What It Takes

grit

It seems to me that the word grit is on the lips of many people today. It is old-fashioned, conjuring up memories of movies starring John Wayne.

Having grit means having the determination to stick to your goals despite setbacks and failures. You persevere. You set goals and you follow through. For those of us with Parkinson’s disease, that can mean taking our meds on time and with consistency. And not missing exercise class.

Angela Duckworth, author of “Grit: The Power of Passion and Perseverance,” explained the concept in a TED talk:

“Grit is passion and perseverance for very long-term goals. Grit is having stamina. Grit is sticking with your future, day in, day out, not just for the week, not just for the month, but for years, and working really hard to make that future a reality. Grit is living life like it’s a marathon, not a sprint.”

But you may have doubts about a future with Parkinson’s disease. You may wonder why you should work hard and try to move forward when this chronic illness is moving you backward. Why try to take another step forward when you are on a downward spiral toward (more) misery, agony, and pain? How do you move forward with that kind of future as your probable reality?

Grit. This powerful word holds hope and strength. Grit is continuing to act even in the face of severe odds. It is choosing to live with staying power even on the toughest of days. Those days when you feel you may not make it physically, emotionally, mentally, or spiritually.

Author and entrepreneur James Clear says that building grit comes with small physical wins. “Prove to yourself — in a thousand tiny ways — that you have enough guts to get in the ring and do battle with life,” Clear writes.

He adds that grit isn’t about inspiration or courage, rather, “It’s about building the daily habits that allow you to stick to a schedule and overcome challenges and distractions over and over and over again.”

Living life by building (more) grit into it is to run straight ahead into our challenges and the adversity that life throws at us. Grit enables us to bear our burdens, including those caused by Parkinson’s disease. It allows us to press on when obstacles are thrown in our path. It is the medium used to refine and reshape our lives into something more beautiful.

I’m gonna get myself some of that grit.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post True Grit Is What It Takes appeared first on Parkinson’s News Today.

With Parkinson’s, the Good Is Worth the Fight

grit

In her latest column at Parkinson’s News Today, Jean Mellano shares a frightening experience she had several years ago while cycling in Spain. “The memory of that trip plays in my mind as I fight my new battle against another formidable adversary,” she writes. “Just when I think I am making headway against this beast called Parkinson’s, it rears its ugly head with a renewed fury.”

Isn’t that just like the Parkinson’s beast? Much like what Jean describes, it can come head-on, offering no grace. For some, it gives a reprieve and hides for a time. That’s rare, but it’s been known to happen.

Be in it to win it

Jean says she is a survivor. After reading some of what she has been through, I am inclined to agree. She is someone who has continued to press on despite her circumstances.

In “The Lord of the Rings,” Sam tells Frodo (after somewhat of a lengthy speech), “Folk in those stories [of hardship] had lots of chances of turning back, only they didn’t. They kept going. Because they were holding on to something. … That there’s some good in this world, Mr. Frodo, … and it’s worth fighting for.”

How do you keep going while living with Parkinson’s disease? You believe the good is worth the fight. It is worth cinching your belt and preparing for a battle for hope. It is worth pulling up your boot straps, sharpening your sword, polishing your shield, and setting your helmet securely upon your head.

It is time to do battle with the beast. Be in it to win it.

With Parkinson’s, you must be ready for the blows it will throw at you. Be intentional. You need to be ready to strike back.

How to keep pressing on

  • Get up and exercise: Parkinson’s will try to keep you in your recliner. Pull tight on those boot straps and move! Even if it’s walking around your house two times a day, something is better than nothing.
  • Take care of yourself mentally: Don’t let Parkinson’s steal your joy. Focus on what makes you happy.
  • Spend time wisely: Parkinson’s will compete for your energy. Decide in advance how you will handle your “down” time. Don’t waste the time given to you.
  • Fill your mind with truth: Parkinson’s will mess with your head, so keep that helmet snug. Play brain games. Listen to encouraging music.

I call Parkinson’s the “little monster.” It is out to destroy us, but we can’t give up and we can’t give in. We don’t have to be alone in this battle. We are in this together.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post With Parkinson’s, the Good Is Worth the Fight appeared first on Parkinson’s News Today.

A Scientific Model of Sanctuary Helps Me to Overcome Resistance

model

Each time I seek sanctuary, I face resistance. But fortunately, I’ve found a model of sanctuary that helps me to overcome that resistance.

The other day, I watched a lecture by cognitive neuroscientist Indre Viskontas, which was part of the video series “Brain Myths Exploded.” She spoke about the brain as having a continuous level of background noise, and conscious attention is given only to those stimuli that can break through that noise. The idea resonates with my theory of how a quiet mind can affect pain management. I hadn’t painted my brain model that way before, but I like the new colors.

Since my discovery of that concept, the signal-to-noise ratio idea crawled its way through my neural web of interwoven knowledge of various types of attention and their application to chronic disease recovery. We can link the practice of using sanctuary to promote well-being to the method of redirecting attention, including shifting perspective. Parkinson’s disease affects brain areas that are responsible for moderating emotions and attention and that also deal with stress and overlearned motor sequences.

I am less troubled by these chronic disease issues when sanctuary is in my life. Following is a model of how sanctuary works:

The model’s foundation comprises a set of assumptions that we agree to be true:

  • It’s alive!: The brain generates electrical and chemical energy and is either “on” or “off.” The latter implies brain death.
  • Brain specialization: Particular areas of the brain are responsible for specific functions, such as motor memory, pain awareness, sensory input, and motor control.
  • Use it or lose it: Use or nonuse of the brain correlates with neural branching or snipping. More branches correspond with improved functioning of that brain area and better communication with other brain areas. The more you use it, the easier it is to use. If you don’t use it, then it’s hard to overcome the resistance.
  • Consciousness is attention to signals above the noise: The brain is continually processing neurochemical signals that create a level of internal background noise — much of it subconscious. We attend to the signals we deem to be the most important.

The main body of the model is built on top of the foundation and provides some understanding of how sanctuary works to promote lasting changes in well-being. This part of the model includes:

  • Conscious perception is unfixed. The level at which signals exceed noise and become conscious perception is not set. The point at which we are aware of the stimuli coming into our brain changes based on the demands of the situation and our experiences with altered mental states — including lucid dreaming and mystic practices like deep meditation. At times, we are hyper-alert and time seems to slow down.
  • Perception of “noise” is changeable. The behavior of the “noise” can be altered through meditative practices. Instead of standing in an ocean with raging waves of noise, we can be dwelling in still waters. Changing the way that we hear noise alters the way that we perceive life.
  • Threshold tolerance levels can be altered. A signal threshold tolerance exists, which when exceeded, will result in dysregulated emotions. Meditative practices can increase threshold levels, and unhealthy practices can lead to a lower threshold tolerance.

The final piece of the scientific model of sanctuary is the practice of early detection. By using sanctuary to provide an early warning, we can avoid the consequences of dysregulated emotions. The development of an early warning system has a significant impact on wellness. The sooner I can detect an abnormal increase in signal intensity — pushing me over the top and leading to the possibility of my spinning out of control — the more likely my success at controlling the threshold will be.

Sanctuary works because it supports my internal early detection system. This happens because of shifts in attention, perception, and possibility of change. Shifting into the “between” is a new way of seeing old problems or models.

The three most important steps I can take to manage my chronic disease are:

  1. Have the best medical team in place.
  2. Exercise, sleep, and eat well.
  3. Practice using sanctuary in combination with a wellness map.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post A Scientific Model of Sanctuary Helps Me to Overcome Resistance appeared first on Parkinson’s News Today.

Empower Yourself by Making Good Choices

exergaming

Medication is more than the regimen of pills we take every day. Exercise, diet, and music are lifestyle choices that are beneficial to people with Parkinson’s disease (PD). We did not choose to have Parkinson’s, but we do have a choice about how we live with and respond to PD.

Making good choices and living well with Parkinson’s is empowering. You are in charge. There can be a day when the couch and ice cream for breakfast are the specials of the day — they just can’t be specials for the entire week.

One frequently asked question is, “What is the best type of exercise?” While research regularly highlights different benefits of different types of exercise, the answer is simple: The best type of exercise for you is one that you love to do and look forward to every day. Try different things. I do a variety of exercises, from coaching Rock Steady Boxing classes to attending ballroom dance lessons with my husband.

Exercising with people who also have PD is an added bonus. Shared diagnoses facilitate camaraderie that becomes an extended family. You show up for class because your brothers and sisters are waiting for you. Everyone may be at different stages in their Parkinson’s journey, but we all share the same hope.

Exercising together provides a support group that meets two or three days a week, rather than once a month. It may be the only support for someone who otherwise may be alone. By doing things together, the unexpected and uncertain Parkinson’s detour can be a little less frightening.

So, where does music factor into the detour? Music can take you in so many different directions, like playing an instrument, singing like a rock star in your car, or dancing. There is evidence that drumming is beneficial, and you don’t even need an instrument — turn your garbage can over and you are ready to go!

Music encourages movement and is fun, especially when dancing. We all know that when we hear the song “YMCA,” all hands are in the air. Dancing is something you can do with someone who is on the Parkinson’s journey beside you or even by yourself. Dance through your house while doing the daily housework like no one is watching!

Little victories happen each day. If you can’t find one, create one by choosing a little extra medicine that has a good beat, makes you sweat, or gives you vitamins. So, go ahead and put on some good music, exercise, and finish with a smoothie made with all those superfoods (yes, even kale). At the end of the day, you can look back and say, “Today, I was in charge, and I won.”

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Empower Yourself by Making Good Choices appeared first on Parkinson’s News Today.

James Parkinson’s Work Paved the Way for Future Research

research

James Parkinson changed the course of medical history when he first described the “Shaking Palsy” in 1817, at a time when little was known about neurological and degenerative diseases.

I decided to delve into the history of the disease to see how it might relate to modern medical practices. I wondered how James Parkinson’s research made current treatments possible for my dad.

Did Parkinson’s disease look like it does today? What might we learn from the man whose work has resonated throughout modern medical history?

Medical thinking during Parkinson’s time seems bizarre by today’s standards. Mere decades before Parkinson published his seminal essay, Scottish physician John Brown brought forth his “excitability” theory, categorizing illnesses as sthenic (strong) and asthenic (weak). According to the Encyclopedia Britannica, treatments were either sedatives or stimulants.

While characteristics of Parkinson’s disease were recorded in early clinical documents, James Parkinson was the first doctor to attempt to understand the disease in its entirety. He was way ahead of his time in terms of research and diagnosis.

Who was James Parkinson?

James Parkinson was born in London in 1755, the son of an apothecary and surgeon. He followed in the footsteps of his father, studying at the London Hospital Medical College, before qualifying as a surgeon in 1784.

As a political activist, he challenged the political system of the time. He also advocated for social reform and universal suffrage, later adopting humanitarian causes.

Parkinson began to study the condition, which was later given his name, hoping to alleviate the suffering of his patients. His motivation for becoming a doctor was apparent in a pamphlet he wrote about the requirements of a medical education. In the document, he describes “a sympathetic concern, and a tender interest for the sufferings of others [that] ought to characterize all those who engage themselves in a profession, the object of which should be to mitigate, or remove, one great portion of the calamities to which humanity is subject.”

An essay on the ‘Shaking Palsy’

In 1817, Parkinson published a 66-page document describing symptoms that he believed to be fundamental to diagnosis of the disease.

He defined the “Shaking Palsy (paralysis agitans)” as follows: “Involuntary tremulous motion, with lessened muscular power, in parts not in action and even when supported; with a propensity to bend the trunk forwards, and to pass from a walking to a running pace: the sense and intellects being uninjured.”

In a recent column, I described Dad’s approach to handling muscular changes as Parkinson’s progresses. Nearly 200 years ago, James Parkinson identified “lessened muscular power” as one of the key elements of the disease.

While observing the first signs of the disease, Parkinson noted: “So slight and nearly imperceptible are the first inroads of this malady, and so extremely slow its progress, that it rarely happens, that the patient can form any recollection of the precise period of its commencement. The first symptoms perceived are, a slight sense of weakness, with a proneness to trembling in some particular part; sometimes in the head, but most commonly in one of the hands and arms. These symptoms gradually increase in the part first affected; and at an uncertain period, but seldom in less than twelvemonths or more, the morbid influence is felt in some other part.”

The text goes on to evaluate six case studies, observing the differences and similarities in Parkinson’s patients and their disease progression.

It seems strange to me to think that Parkinson could predict how my dad’s journey with the disease would unfold. Dad noticed a slight tremor in his right foot, which led to his diagnosis in 2013. Over the last six years, the tremor has spread to his other limbs.

Parkinson’s work paved the way for future medical research by linking the symptoms that are unique to the disease.

Research toward a cure

Much of Parkinson’s research is still relevant today. His observations enabled researchers and neurologists to take the next steps in fighting Parkinson’s disease. Parkinson’s Life notes that the biggest difference between Parkinson’s observations and modern understanding of the disease is the current recognition of dementia on the spectrum of Parkinsonism symptoms.

His research was aimed at a cure and finding a solution that would slow the progress of the disease. When he died in 1824, he left a legacy that changed how Parkinson’s disease was understood in the future.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post James Parkinson’s Work Paved the Way for Future Research appeared first on Parkinson’s News Today.

Are You a Victim or a Winner?

victim

When I think of a victim, I think of someone who has had something bad happen to them. A victim could be someone who has been tricked or fooled in some way. Maybe the person has been harmed, or even killed.

Or it could be someone who has been affected by an illness.

Enter Parkinson’s disease

A diagnosis of Parkinson’s disease (PD) is a life sentence. It is an incurable, chronic illness destined to be your companion for the rest of your days. And a not so pleasant companion at that.

But must we take on the role of victim? Because we have been told that we must live with this disease we often loathe, must we live defeated? Must we live as if we have lost the fight against something that begs for control over our body? Give in and give up, throwing to the wind whatever hope we had left?

Enter the winner

A winner perseveres in the game, whether it is soccer, parkour, Monopoly, boxing, or cards. Winners are the champions of their games. A winner wins. They defeat their opponent with ability, strategy, and hard work.

We are playing a game with Parkinson’s disease. It is a never-ending game, and we must work hard and play strategically, giving it our all. Our life depends on it.

How to play the game

As with any game, if you don’t play to win, you most likely will lose. If you don’t play to win at Parkinson’s, you most likely are playing without hope.

Playing without hope is nothing short of a death sentence. It is as if we are deciding that there is nothing better. As if we think we know what the future holds. 

Instead of allowing dark clouds to hover above our heads, we should be playing this game of PD with unfettered hope. A hope that says and believes that someone is out there fighting with and for us. A hope that doesn’t give up.

The Michael J. Fox Foundation mission statement says, “Here. Until Parkinson’s isn’t. We went into business to go out of business. We act with urgency, focus and determination, and won’t stop until a cure is found.”

I don’t know about you, but that gives me hope.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Are You a Victim or a Winner? appeared first on Parkinson’s News Today.