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The outlook for people with Parkinson’s disease is improving


Brought into the limelight by actor Michael J. Fox, Parkinson’s disease affects the body’s ability to control movement.

The most prominent signs of Parkinson’s disease result from damage to brain cells that produce a neurochemical called dopamine. Dopamine helps people have smooth, coordinated muscle movements by relaying messages to the parts of the brain that control these movements.

Damage to dopamine-producing cells can induce symptoms, such as tremors, stiffness and slowness.

“The early signs tend to be subtle and intermittent, and then they become more progressive until it is clear that something is wrong,” says Jennifer Goldman, MD, a neurologist who specializes in movement disorders at Rush University Medical Center.

The damage to brain cells is not limited to those producing dopamine. Other symptoms such as depressionanxiety, cognitive impairment, constipation and fatigue result from damage to other brain regions and are the focus of more recent research.

At present, Parkinson’s disease is a chronic disease with no known cure. While symptoms can be managed with medication, they continue to worsen.

The good news? Goldman predicts that in the next decade there will be significant breakthroughs in treating Parkinson’s disease and slowing the progression of the disease.

In fact, according to the National Institute of Neurological Disorders and Stroke, current advances in Parkinson’s research have already raised realistic hopes of being able to halt the progression of the disease, restore lost function and even prevent it entirely.

While the timeframe for this is hard to predict — it could be within five to 10 years — one thing is certain: hope is on the horizon. Here, Goldman shares five things to know about Parkinson’s disease.

  1. Early detection may improve future treatments.

One of the big pushes in Parkinson’s research today is detecting the disease before such characteristic movement symptoms, like tremors, surface.

Research suggests that dopamine begins to decline six to 10 years before any neurological symptoms appear and that damage to other nervous system regions may occur even earlier. Very early signs of Parkinson’s disease that may appear before evident motor deterioration include the following:

  • Loss of sense of smell (or, anosmia) which begins about four to six years before movement dysfunction.
  • Chronic constipation, which can begin up to 12 years before motor symptoms.
  • Physically acting out dreams at night, a sleep disorder that is known as REM behavior disorder, can begin up to decades before any motor symptoms.

While these symptoms do not always signify Parkinson’s disease, people should discuss these issues with a physician. By studying groups of people with early signs, researchers are developing treatments that target different parts of the brain that could slow, or even halt, the progression of the disease.

“Our goal is to find ways to prevent people from developing movement problems, and we’re getting to a point where that is an achievable goal,” Goldman says.

  1. Standard treatments are being tweaked.

Since the late 1960s, levodopa (a medication that the brain converts to dopamine) has been the most effective treatment for addressing motor symptoms of Parkinson’s disease. The problem for some patients, however, is levodopa does not provide the constant flow of dopamine necessary for smooth function throughout the day.

“People sometimes get into a pattern of good function when the medication is working well, alternating with bad function when the medication is not working well,” Goldman says. “That unpredictability makes it hard to live a normal lifestyle.”

New research is focused on developing treatments that will give people a more steady flow of dopamine and decrease fluctuations.

“There is a lot of work going on to fine-tune brain cells to receive dopamine so the response is better,” says Goldman. “The Michael J. Fox Foundation and some of the drug companies are very interested in this area of research.”

One common side effect of not having steady levels of dopamine is dyskinesia (involuntary movements). To address this issue, Christopher Goetz, MD, director of the Parkinson’s Disease and Movement Disorders Program at Rush, is working on a multicenter clinical trial of topiramate (a seizure medication) as an add-on to amantadine (a medication used for treating dyskinesia) to improve control of dyskinesia. This study is funded by the Michael J. Fox Foundation, and Rush is both a participating site and the coordinating site for the study.

Additionally, Leo Verhagen, MD, PhD, a neurologist at Rush, is participating in a study involving an investigational agent for dyskinesia. The study will include people who are taking amantadine as well as those who are not taking amantadine for dyskinesia.

  1. Surgical intervention decreases fluctuations.

People who respond well to medications, but struggle with fluctuations throughout the day may be eligible for deep brain stimulation (DBS), a surgical treatment in which a neurostimulator delivers tiny electrical signals to areas of the brain that control movement.

“DBS is not dopamine, and it does not cause the release of dopamine. But the stimulation is constant, so it reproduces the effect of having constant dopamine,” says Goldman. “For people who do well with DBS, it is a miraculous improvement.”

While DBS is rarely a substitute for medication, it is a good option for otherwise healthy people who have periods where their medications aren’t working.

  1. Exercise can improve function.

In addition to its well-known effects of slowing down cognitive decline and boosting heart and lung function, exercise can help improve gait, balance, tremor, flexibility, grip strength and motor coordination in people with Parkinson’s disease. Ongoing studies are also looking at how exercise may, in fact, influence the progression of the disease.

Beneficial exercises include treadmill training, biking, dance, tai chi, yoga, and strength and flexibility training.

Several years ago, Rush partnered with Hubbard Street Dance Center to create a dance class for Parkinson’s patients. Today, Hubbard Street Dance’s Parkinson’s Project is a popular weekly class for people with Parkinson’s disease, their loved ones and their caregivers.

The program uses contemporary dance techniques, along with live music, to help patients improve their balance, dexterity or an overall mobility. Equally as important, the class is a warm, welcoming community that provides emotional support to its participants.

  1. Managing your mood is crucial.

Living with a chronic, progressive disease can take a serious emotional toll on patients and their loved ones. Depression and anxiety are common symptoms of Parkinson’s disease, with up to 60 percent of people who have the disease experiencing mild or moderate depressive symptoms.

Depression becomes the real driver of quality of life for people with Parkinson’s disease,” says Goldman. “You can adjust people’s motor function all day long with medication or surgery, but if you can’t improve their mood, then they have a poor quality of life.”

Some patients benefit from psychological counseling and/or taking medications to help improve their mood. Support groups — such as the group hosted by Rush Oak Park Hospital the second Saturday of each month — can also help people with Parkinson’s disease learn how to live changed, yet still full lives.

“We work with our patients to find medications and other strategies that will improve their quality of life at every stage of the disease, targeting the symptoms that matter most to them and their families,” says Goldman.


Reprinted from Rush University Medical Center


Fava bean powder

fava beans.jpg

I think fava bean powder helps to make my carbidopa/levodopa medication work better.

I first heard about what fava beans can do for Parkinson’s suffers in November 2016 from a Facebook post about “AtreMorine”.  The page was called “Live better Parkinson’s”.  The story was about a Spanish research team that found two major keys of the neuroprotection and natural increase of dopamine.  My interest was immediately piqued.   The research team found that a supplement called “AtreMorine” protects selectively dopaminergic neurons and significantly increases naturally the dopamine level in the organism and without any adverse effects.

I immediately began to research AtreMorine and found that is quite expensive.  One 75 gram bottle cost 97 €, plus 17 € shipping, from Netherlands.   AtreMorine is made from fava beans which are a natural form of L-dopa.

Knowing the fava bean was the central element, I tried to find fava beans or fava bean powder.   Luckily, my daughter found exactly what I was looking for from a company known as Nutricargo in New Jersey.   I was able to get a 1 pound bag for only $20.

I began taking the AtreMorine in December 2016 as an experiment.  The article said a dose was 5 to 10 grams which is one or two scoops of the spoon they provided.  The directions were to not take the fava bean powder with water or hot food.  I began mixing 10 grams, or two scoops, of fava bean power with a banana and pudding.  Within a couple weeks I began to feel better.  The persistent Parkinson’s ache was gone.  I felt better than I had in years.   I felt like the dyskinesia from too much carbidopa/levodopa was lessened and the medicine off times were shorter.  Fava bean powder, by the way, tastes awful.

On January 3, I visited with a neurologist at Hines VA Hospital in Chicago.  I told him I felt better than I had in years.  He could not explain it.

I wanted to find out exactly how much the fava bean powder was helping me, so, I decided to conduct an experiment.  I didn’t think I could go completely without medicine, so decide to reduce my intake.  I usually take a dose of carbidopa/levodopa every two hours.  I decided to take two scoops of fava bean powder, twice a day.  I would continue to take the extended release carbidopa/levodopa every six hours.

Well, the first day was great.   I felt like a new man.   But the second day was not good at all.  So, after about 48 hours of trying, I went back to my original dosing schedule.  After almost a week of taking my regular doses of medicine and the fava bean powder, I began to feel well again.  The result of my experiment was the fava bean powder help reduce dyskinesia, reduce “off” periods, and relieve the muscle ache caused by Parkinson’s.

Lessons learned:  I have never felt better when I was using the fava bean powder.  Continue regular medication regimen.   Some Parkinson’s medication cause constipation – fava bean powder makes it worse.

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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.

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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.  Others experience tremors and shake uncontrollably.  Parkinson’s patients get caught 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.

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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.

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 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.

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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.

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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.