Check your meds


I took a good look at the medication I was taking and, to my surprise, I realized I’m not given the same medication each time a prescription gets filled.  I take four medications to provide relief from the symptoms of Parkinson’s, the main ingredients in three of them is carbidopa and levodopa.  The fourth prescription is for amantadine, which is supposed to help control the side effects of the carbidopa and levodopa.

My day revolves around taking my medication in a consistent and timely manner.  I can get into trouble if I have too much or too little carbidopa and levodopa in my system.  Too much and  dyskinesia kicks in and I can’t sit still, my heads bobs around, and I have dance-like movements.  Too little and I lock up – I tense up as if I were paralyzed.  The best I can do, and what I hope and strive for, is to live somewhere in between these two miserable extremes.

I’ve been prescribed four medications.  The brand name of one medication was Stalevo.  Stalevo contains entacapone, which is an agonist or helps in the absorption of, carbidopa and levodopa.  I have received three different medications for this drug.  One prescription was Stalevo 100(25/100/200MG), made by Novartis, described as oblong, rust, and engraved with LCE100.  The second drug was another brand name, made by Mylan, called Carbidopa, Levodopa, and Entacapone, described as oval, brown, and engraved with STO 100.  The third was a generic labeled as Carbi 25/Entacacpone 200/Levod 100MG, is also described as oval, brown, and engraved with STO 100.  I’m not sure which tablet works best.

The second medication was a generic extended release drug labeled as Carbidopa 50/Levodopa 200MG SA, described as oval, purple, and engraved with 521.  The next time I had the prescription filled I was given Carbidopa 50/Levodopa 200MG SA, made by Mylan, described as oval, purple, and engraved with 94.  I take this medication to help me sleep comfortably.

The third medicine was Sinemet (which literally means “no vomit”).  Sinemet is a brand name for carbidopa and levodopa.   I received four different medications for this drug.  One script was Sinemet (Carbidopa 25/Levodopa 100MG), described as round, yellow, and engraved with 650.  The second drug was made by Mylan, labeled Carbidopa 25/Levodopa 100MG SA, described as purple, oval, and engraved with 88. The third was a generic drug labeled as Carbidopa 25/Levodopa 100MG, described as round yellow, scored, and engraved with 539/R.  The fourth prescription was made by Mylan, called for Sinemet EQ (Carbidopa 25/Levodopa 100 MG) described as round, yellow, and engraved with M and CL2.  Of the four medications, the latter worked the best.  But when I asked the neurologist for that specific drug, he said he no control over which drug the pharmacy provided.

Finally, the fourth prescription was for Amantadine HCL 100MG, is described as a red capsule and stamped with GG634/GG634.  The next time I had the medication filled I was given Amantadine HCL 100MG, described as oblong, yellow, and stamped with C-122.  Between the two medications, the former worked the best.  I didn’t bother to ask for the GG634/GG634.

So, what’s the moral of this story?  I now read the labels on the medicine I’m given and look closely at the pills I’m taking.  I don’t assume they are always the same and that my body will react the same.  I keep track of the medicine the pharmacy is giving me.  Pharmaceutical manufacturers are allowed variances and tolerances when it comes to manufacturing drugs.  The government has allowances built in so producers can make their drugs cheaper, read generics here.  Drugs that treat more serious conditions, such as seizures, have smaller tolerances and are more expensive.  See which pharmaceutical manufacturer’s medicine works best for you and try to get it.  It never hurts to ask, but remember, its business first.  More on that in my next post.

Sentiments on Keep moving


Parkinson’s is a movement disorder and affects a person’s ability to move in a smooth and coordinated way.  It effects people differently; people don’t share the same symptoms to the same degree.  For example, some people become stiff and cannot move, as if they are paralyzed.  Other people experience tremors and shake uncontrollably.  Most Parkinson’s patient’s try to live in-between these two undesirable states.  They are continually using their medication to search for balance amid these two disagreeable alternatives.

I learned from my father that an unused car will deteriorate faster than a car driven every day.  As it turns out, a car left unused can suffer from maladies like: dead batteries, rodent infestation, flat tires, moisture in the fuel tank, dried out and cracked rubber hoses and belts, and worst of all, a seized engine.  A car that is used regularly will rarely succumb to any of these conditions.

The same is true for humans.  If we don’t use our muscles, they atrophy.  I remember after I had deep brain stimulation (DBS) surgery, the nurses wanted me up and walking around as soon as I could.  Moving about gets a person’s blood flowing which facilitates healing.

It’s important for me to keep moving physically.  Any exercise that is helpful to maintain health and strength is good – even if it’s just walking down to the mailbox.  I need to use my time wisely and be active as much as possible while my medication is working.  I do have my limitations, because when I’m out and about too much, I get fatigued and my meds don’t seem to work as well.  Being active requires energy and I must get rest and stay hydrated to feel my best.  I need to listen to my body.

I don’t have a coach, but I can see how having one would be beneficial.  A coach would push me physically and emotionally, past my comfort level.  A coach would tell me what I need to hear, not what I want to hear.

So, I function best when I have a plan for the day – a goal to reach.  I’m perfectly content to stay at home every day, but I must admit, it’s better for me to try to get out of the house each day.  I have found that volunteerism suits me well.  This helps me get out of the house and stay connected to people.  It gives me a purpose.  I’ve concluded it’s paramount for me to keep moving.

Sentiments on Resilience


Resilience is the power or ability to recover readily from illness, depression, or adversity.  It is the ability to bounce back after experiencing tragedy or loss.

Most of the Ten Sentiments relate to making a decision in your mind to apply one of its virtues to overcome adversity.  What sets resilience apart from the other virtues is that it includes the involvement of other people in your life, particularly a caregiver.

Resilience involves relationships and openness.  People who are resilient depend on others in a healthy way.  They communicate their inmost thoughts and feelings – good or bad – and seek help in dealing with troubling thoughts.  As is share my hardship with others, I can be encouraged to be resilient in the face of adversity.

I think the best examples of resilience are found in those men and women who serve in the military.  Soldiers in combat see the most horrible things.  Perhaps the worst thing a Soldier can see, is the death of a ‘battle buddy’.  Although Soldiers aren’t physical brothers and sisters, when they go through hard times together, they can develop bonds between them that are stronger than with their own blood relatives.  Many times we hear of Soldiers who are injured in combat and how desperately they want to get back to their units to be with their buddies.  Why?  They love one another and would literally die for each other.

I have experienced this myself during my time in the Army.  Specifically, while deployed during Desert Storm and Iraqi Freedom.  We lived in some horrible conditions in the deserts of Saudi Arabia and Iraq.  We’d joke that our living conditions were unfit for criminals imprisoned in the United States.  But that was how we dealt with those terrible conditions, we helped each other laugh and remember this suffering was only temporary.  We’d recall the good times and look forward to going home.

When a Soldier experiences the death of a buddy, it is devastating.  No training can prepare you for that.  I’ve never experienced such a loss and I never want to.  The Army has experienced high numbers of suicides in recent years.  Some were a result of losing a ‘battle buddy’ coupled with the inability to be resilient.  I am convinced that if these Soldiers had someone they felt comfortable to talk with about their feelings, they would be with us today.  Frankly, I hate to admit it, but there is a stigma in the military about seeking help for mental health issues, but the military is trying to remove that stigma.

My wife, as caregiver, helps me to be resilient.  I can be open with my feelings with her because I know she cares about me.  I know she has my back and wants the best for me.  She is compassionate, understanding, and above all, patient.  I think that is what I need most, her patience.  I have good days and bad days.  I can’t do all the activities we used to do, but she doesn’t make me feel guilty about that.  She understand me, and I think that is something we all need.

The virtue of resilience has helped me overcome being afraid of asking people for help or needing a caregiver.  Getting help is not a sign of weakness, it is acknowledging my need for other people in my life and a part of being human.  We all need a little help some time, even Soldiers.

Sentiments on Attitude


Attitude is defined as someone’s disposition, feeling, or position toward a person, thing, or situation.  Our attitude is so important, it can be determining factor whether we live or die.  Viktor Frankl, a concentration camp survivor, summed up the importance of attitude this way, “Everything can be taken from a man but one thing:  To choose one’s attitude in any given set of circumstances, to choose one’s way.”

My attitude is controlled by my heart and mind.  As the proverbs say, “As a man thinks, so is he.”  It is necessary for me to develop positive mental habits, such as meditation and prayer, to change my thinking and attitude.  By practicing these, I can tap into a higher energy that can help me grow in my ability to maintain an optimistic attitude.

My attitude is directly affected by how much control I perceive to have of my life.  When I don’t think I have control in my life, I get emotional, frustrated, and angry.  Because of my ailment, I don’t have complete control over my body.  I gain inner peace when I release control of my life’s worries.

I’ve decided to have an attitude of acceptance about situations I can’t change.  For example, I can’t always get up and go wherever and whenever I want to.  The effectiveness of my medication plays a key role in when and what activities I’m going to engage in.  I have to carefully plan my day, watching what I eat, so I can be mobile when I need to be.  In the past, when I had to get dressed for work, sometimes my medication wouldn’t be working and I would get frustrated and stressed out.  I was afraid I’d be late to work, compounded by the terrible ache of rigidity that filled my body, I was miserable.  My attitude is different now.  I realize there is not much I can do if my medicine is not working.  The only options I have are to either take more meds or wait for what I have taken to kick in.  I accepted the fact I have limitations and I need to work within them.

A spark of the divine lives in everyone.  Knowing this encourages me to elevate my thinking from a physical level, to a spiritual one.  I strive to be made new in the attitude of my mind and trusting in the power that controls the universe.  And although I have limitations, these are not without purpose.

My attitude has changed toward my hardship, because I know that difficulty has a purpose – to strengthen my character and to make me a better person.  Struggling with difficulty is a necessary part of life, it’s unavoidable.  For it is through difficulty and overcoming adversity I find knowledge, light, compassion, and purpose.  Thus, Parkinson’s is a catalyst to change my attitude and help me grow.

Since my thoughts and emotions directly affect my attitude, I need to keep my thoughts focused on what is good.  The Ten Sentiments are powerful qualities to meditate on as I divest my mind of unworthy, negative thinking.  The Bible lists virtues I should instead set my mind on: whatever is true, pure, noble, lovely, admirable, excellent, or praiseworthy.  When I fully embrace these wonderful virtues, I am able to grow in the most positive of all attitudes, an attitude of love.  Love is the most powerful force in the universe.

Sentiments on Perseverance


Perseverance is defined as a steady tenacity in purpose or a course of action – especially in spite of difficulties, obstacles, or discouragement.  It requires determination to actively seek, and hold on to, what is good.  Perseverance is, in spite of slipping and falling or getting knocked down, having the internal fortitude to get back up, again, again, and again.

Perseverance is a virtue that can be developed.  If you are faint of heart, be encouraged, you can grow in your perseverance – but, understand this, it will not be easy.  For there is only one way to develop perseverance – and that is by enduring hardship.

Irving Stone has spent a lifetime studying greatness, writing biographies of such men as Michelangelo, Vincent van Gogh, Sigmund Freud and Charles Darwin.  Stone was once asked if he had found a thread that runs through the lives of all these exceptional people.  He said, “I write about people who sometime in their life…have a vision or dream of something that should be accomplished…and they go to work.  They are beaten over the head, knocked down, vilified and for years they get nowhere.  But every time they’re knocked down they stand up.  You cannot destroy these people.  And at the end of their lives they’ve accomplished some modest part of what they set out to do.” (Crossroads, Issue No. 7, p. 18.)  These people are some of the many great examples of perseverance we can use to encourage our spirits.

President Calvin Coolidge had an interesting quote about perseverance in Bits and Pieces saying, “Nothing in this world can take the place of persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. The slogan “press on” has solved and always will solve the problems of the human race.”

According to Coolidge, the virtue of perseverance can solve the world’s problems.  Perhaps he’s right, but I can’t solve the problems of the human race.  All I can try to do is encourage people to persevere.  And if I’m determined, maybe I can have some positive influence in my part of the world.  To do so, however, I would need to have a strategy to help me persevere.

When adversity from Parkinson’s gets me down, sometimes I feel like giving up – one time I even wanted to hurt myself.  On this occasion, my medication was not working, and I was rigid and unable to move – almost paralyzed.  My muscles were tense causing severe discomfort.  I was in pain and I wanted it to stop.  I felt like there was no way I could live with this constant ache and stiffness.  I was telling myself the battle was too hard and it was too difficult to endure the pain.  I wanted to die.

But, I recalled a decision I had made earlier.  I was not going to make an emotional decision when I was physically not feeling well.  I told myself that, when I didn’t feel good, I would remember how well I felt when my medicine was working and how much I desired to live.  I needed to remind myself that life was worth living and that I had a lot to look forward to.  I know that these moments of suffering are temporary and will pass.  I must hold on to what is good.

So, this was my strategy, to not make any big decisions when I’m racked with pain.  I decided to make decisions only when I’m in the right frame of mind.  When I feel like I want to quit, to remind myself, I’ve already made the decision that I’m going to resist my negative thoughts and that I really want to live.  I decided to recall how much better I feel when my medication is working and that the pain is only temporary.  I need to go by what I know to be right, not by my emotions.  I won’t allow the physical pain of my disease or adversity to overwhelm me.

The Ten Sentiments


The Ten Sentiments:  virtues to live by

        Keep moving
        New perspective
        Stay positive
        Overcome adversity
        New beginnings
        Stay strong

Copyright © 2016, William Wilson, All rights reserved

Passion Flower

PF tea                        passion flower

I have completed an experiment with the herbal supplement Passion Flower*.   And after taking three 210 mg tablets a day, for 60 days, I’m experiencing some relief from the continual muscle aches that accompany Parkinson’s.   I usually experience an aching feeling in my body caused by muscle stiffness, which is one of the most common symptoms of Parkinson’s.  My regular medications provide some relief from this symptom, but I still feel “uncomfortable” most of the time.   Could the nutrients in Passion Flower be responsible for providing relief from muscle rigidity?

The Vitamin Shoppe’s web site states, “Passion Flower is intended to provide nutritive support for normal, healthy relaxation.  The German Commission E has approved the use of Passion Flower for nervous restlessness.”  It also shows Passion Flower used to reduce stress and anxiety, and to support and improve sleep, mood, pain management, and brain function.

Has anyone else tried Passion Flower?  What has your experience been?

In the past, I’ve written about the positive effects of coconut oil on improving absorption of the drug in one’s system, which reduces the medications ‘on’ and ‘off’ times.  I think the combination of Passion Flower and coconut oil can bring significant relief from the symptoms of Parkinson’s by reducing muscle stiffness and decreasing medicine ‘on’ and ‘off’ time.

Last, I was surprised to Passion Flower as an herbal tea.

*Be advised, I am not a medical professional and the information contained in this blog represent my personal point of view. Individuals should seek medical advice before starting an exercise routine or using any nutritional supplements.

Parkinson’s mystery


Parkinson’s mystery

Can riding a bike or dancing cure Parkinson’s?  I wish they could, but they can’t.  I have heard of occurrences when people with Parkinson’s possess the ability to perform some physical activity, such as boxing, that it leads one to believe this activity can heal them.  Their ability to perform such activity seems miraculous.

The bottom line is this – exercise benefits those with Parkinson’s.  And the lesson is to keep moving and to stay strong.  I have noticed a similar phenomenon in my life. When my medicine wears off, and my gait is reduced to a shuffle, as the man in the video presents – it is actually easier for me to run, than it is for me to walk. My ability to move has to do with maintaining momentum and making strong, bold motions. Michael J. Fox can perform a similar feat.  He can ice skate and play hockey with such skill that his Parkinson’s is almost unnoticeable.  I think his ability to do this because he has to exert himself to perform the task.

The Lee Silverman Voice Treatment program is based on a similar concept.  The idea that making a concentrated effort and pushing oneself to enunciate loudly can help Parkinson’s patients, who suffer with a weak voice, to speak clearly. It’s all about effort.  Those who suffer with the disease must understand, the best thing they can do for themselves is not to give in to the feelings of immobility and rigidity, but to stay active and to keep moving.  As Tom Petty wrote, “I don’t know, but I’ve been told…you never stop moving and you’ll never grow old.”

Misinformation clarified


It seems a lot of people think Parkinson’s disease kills you. It’s no wonder when TV news reporters announce a famous person died FROM Parkinson’s. Recently, I was heartened to hear the TV anchorman used the correct phrase when reporting the death of a certain celebrity. He said the person “died AFTER suffering from Parkinson’s disease”. Using the word AFTER, makes the phrase accurate.

There are neurological diseases can kill you. For example, Alzheimer’s will kill you, whereas Parkinson’s progressively worsens with time. One PD sufferer said that, “Parkinson’s disease doesn’t kill you, but you might get to the stage where you wish it had”.

This is a clarifying statement and what caregivers and friends need to understand. As Parkinson’s worsens, it can lead to depression. Similarly, “depression” in and of itself does not kill you, but like many chronic illnesses, the most extreme manifestations of it can be life-threatening. So, caregivers and PD sufferers should take appropriate action if they detect signs of depression and continue to help people understand the effects of Parkinson’s.



I never liked the Celebrex commercial that used the phrase, “Its simple physics, a body at rest, tends to stay at rest; and a body in motion, tends stays in motion.” I thought this was silly. I mean come on, they left out the critical phrase, “until acted on by an outside force.” The phase used in the commercial is empirically incorrect, and it’s wrong on a couple of other levels.

First, physics is not simple; I got a D in college physics. Second, they were applying a law that was meant for inert particles of matter to our human bodies. The two bodies were completely different and the physics comparison didn’t make any sense. In physics, the bodies that are in motion are inanimate objects that don’t get tired, stressed, or suffer illness like our living bodies.

Then, they left out an important phrase that makes all the difference. A phase that humans can relate to, the “outside force” that acts upon many of us…the juggernaut of sickness and disease. The “outside force” that acted on me was Parkinson’s disease.

Despite having these issues with the commercial, as someone with Parkinson’s, “A body in motion, tends to stay in motion”, is a positive thought. For me, maintaining my momentum is essential to any kind of movement. I’ve realized that when I make large, strong movements, I move better than if I try to make small, gentle movements. For example, if I try to move deliberately and quickly, such as going outside for a walk, I move better than when I have to make movements in a confined area, such as in a bathroom or bedroom.

Another example, which is kind of embarrassing, but Parkinson’s patients will understand, is rolling over in bed. I really don’t roll over in bed, I have to throw myself over in bed. When I try to turn over in bed, I must get some momentum going before I can get the speed up to exert enough force to get my body moving so I can throw myself to another side.

Similarly, I learned during my Lee Silverman Voice Treatment sessions, (LSVT helps people overcome the weakening voice problems that accompany advanced Parkinson’s) I must force myself to speak loudly, just to be audible. In other words, I had to generate momentum by forcing air out of my lungs to increase the volume of my voice to speak at a normal level.

For those with Parkinson’s, maintaining their momentum when their medication is “off” can be difficult, if not impossible. But stay positive and patient with yourself during these times. Eventually, your meds will “kick in” and you will be able to move again. And when that time comes, and you get your momentum going, make the most of the opportunity and try to do something positive.

Although the physics example didn’t work for me, the idea of keeping your momentum, makes sense. I think a sports analogy is more appropriate. As in team and individual sports, momentum is a powerful force. Teams and athletes try to get and maintain the momentum. Momentum is a game changer; it can be the difference between winning and losing. You too, must strive to get and keep your momentum.